In Sickness and in Health

[supergran]

I need to let of steam or someone may be in danger of being smothered with a pillow. We now have Agency Carers coming into our home morning and evening . It was decided that we wouldn't have them on Sundays to allow me to have one lie-in a week and to be able us to have a more relaxed morning and evening. There is one rule that SG does not get out of bed on his own. This morning at 6.30 he selfishly breaks that rule, gets out of bed, makes his way across the landing to the bathroom and falls. The noise woke me up. Was very tempted to leave him on the floor. I got him in a position to get on his knees, grab hold of the toilet frame he has and heaved him back onto the toilet. I then got him a clean pad and underpants, put a bath towel over the wet patch in the bed and helped him back into bed where I told him to stay. He hadn't used the bottle, had peed in the pad he'd had on last night and the sheet is wet. This is what I have to deal with very often even before a carer arrives to wash and dress him. I have to put him on the commode or go with him to the toilet every day, sometimes 5 or six times. I have to feed him certain meals, help him to lie on the sofa for his naps as he can't get into a comfortable position without help and when he wakes then get him upright again. Every evening I escort him into the lounge, put on the tv so he can watch MASH. I have to change channels for him throughout the day as he seems to have forgotten how to use the remote control. So cricket, rugby etc is put on for him when he wants to watch. The washing machine is on almost every day as well as he has accidents during the day. I have to wipe and clean his bottom every day and make sure it doesn't get sore. I have been doing this willingly but resent him when he doesn't keep to the one rule of not getting out of bed. This isn't the first time he's fallen. He begs me not to call Care line as he will end up in hospital and in the past when I've asked them to send someone to help him up have been told as it's a fall they have to call an ambulance.So I don't call them now. I am now up and wide awake so may as well start my day by getting the washing on. I have been able to watch only one of Andy's matches uninterrupted when he slept. I cancelled the Carer yesterday as he's been coming at 8 in the evening which is really too early. I just wanted an evening when we could eat later and have a relaxing evening which we did. I'm really not sure about the care. Alan says they don't wash him as thoroughly as I do, one of them walks through my house and puts his clothes into the washing machine even though I've put the laundry hamper on the landing and he doesn't look so clean himself. SG is now fast asleep and I'm not.


.....I had been invited to a strawberry and champagne afternoon yesterday but obviously couldn't go. It started at 1 30 so would have been lovely and it was just round the corner from us so could have been back for Andy! The only break I have at present is when I go to the hairdresser on Saturday morning. I have a carer coming in for an hour then and before I go get his clothes out, towels etc, put a bowl, fruit and cereal plus medication ready and have an hour to myself. Am still waiting for his day at a centre to be arranged. Seems someone has to come and assess him for that! I have asked the agency for a later evening call and was told that could take a few weeks to organise!! On a positive note had a visit from an OT lady and nurse who seemed very caring. They told me they would organise physio in the home and would refer me to a group called Friends who, free of charge, could have someone sit with Alan while I went out or even take him out. I've had so many promises and suggestions that I won't hold my breath.

[Teresa]

Sounds awful. It might be worth investigating a movement alarm that would be triggered by SG trying to get out of bed, so you could stop things getting to the falling stage? A friend had one for her husband.

My thoughts are with you,

[supergran]

Thanks, have actually thought of that as they have them in hospitals. Must look into it.

[pabbers]

It's really hard I know, SG. My gran lived with us and had Alzheimer's - I know it's not the same with Alan but the upshot was similar. There was no help in those days and my mother was close to committing suicide which I only found out when I'd grown up.

A friend in the village is in a similar situation to you. She can't leave her husband, has to do the toilet bits etc. She does sewing for other people to keep herself sane and when I had her shorten a dress for me recently, she was just so glad to have some company from someone able to conduct a sensible (yes, I know, even me :lol:) conversation. She got quite weepy.

This is why it's so important for you to stick with the help you get.......never as good as you'd do yourself BUT you CAN'T do it all and mustn't expect it of yourself. You also need a break now and again, so do press for that day centre arrangement if you've got the energy.

Thinking of you both.

[Teresa]

Thanks, have actually thought of that as they have them in hospitals. Must look into it.


http://www.healthandcare.co.uk/bed-chair-occupancy-alarms.html

Not sure if the OT supplies them. I would imagine they are VAT free.

[traveller7]

Oh SG sounds so heart breaking. You must accept help when you can though however hard and even if they arent as good as you. Having a break is vitally important for your health too. X

[Alis]

So hard for you SG, especially as the degeneration has been so sudden. Could family help more?

[WimbledonWestie]

Movement alarm sounds a great idea. And deffo push for the day care arrangement. Thinking of you :grouphug::flowers:

[Linda]

:grouphug: SG.

Keep on about the daycare. Also, you need to see about funding to directly employ carers yourself, so that you can dictate their hours. My daughter works as a carer and she is directly employed by the patient's family. She accompanies him to daycare several days a week and looks after him in his home at other times. He is a severely disabled young man but the principle is the same.

[supergran]

Thanks for all your encouraging and caring comments. I will keep the care pabbers as realise I do need it. Am interested in your suggestion for private care Linda, not sure though I'll get funding but will phone tomorrow. As for family Alis our daughter livemkms in Philadelphia and our son lives in Bury and he and d-I-l come over often. They were here last Sunday to take us out for the afternoon and for lunch. They also stayed over on Friday evening and Sarah did an excellent grooming job on Alan which he enjoyed. They are away wild camping next weekend and I realise they need their time as they both work during the week. I will definitely look into the Friends service also. I realise now that I need all the help I can get.Friends, even close ones rarely phone or call and I totally get that they have their own lives and interests. If it wasn't for MurrayAOne and Juicy who come round regularly I think I'd get depressed. Strangely I'm not. I just get on with it as cheerfully as I can. If Andy knew how important he is at this time in my life........ Thanks again you lovely people. You are such dear friends and I appreciate you all.

[WimbledonWestie]

Hope Andy brings you much cheer today!

[patlowe]

Just adding my thoughts for you Maureen. I think you are wonderful...both in your philosophical attitude and your hands-on care. It's a very lonely place you are in...been there with my mum....and you are very brave. I hope you have success following up the excellent suggestions which have been made here. :hug:

[clancy]

You must push for all the help you can, SG - easier said than done, I know. It's important to look after yourself too as well as your husband. A few days a week at daycare for him will give you some much needed me time, get out of the house, see family, friends (I'm only in Warrington if you want a trip over!) Thinking of you and wishing you both better days ahead. x

[supergran]

Thanks for your kind post Clancy. Today carer due at 9.15. A phone call at 8.15 informed me there had been an incident at previous call and he would be late. That was fine as sg was asleep and I got on with sorting laundry and putting washing machine on. Had coffee, glanced through the paper and put on Olympics. Carer arrived at 10.15, asked me if they'd phoned and apologised. He wasn't too happy as they'd sent him on another call. When he'd protested saying he was due here at 9.15 was told they would ring me. Not his fault but a little frustrating and annoying. Why did they have to lie to me. He told me they lie to carers also.:angry::grrr:

[anor]

Maureen, I seem to have been a bit distracted over the weekend and have only now seen your latest posts. How you are coping I don't know but, as everyone else has stressed you need to persevere with the carers no matter how frustrating their presence or absence is or how much Alan moans about them. Your friends on here are coming up with lots of helpful ideas so I hope that some of them work for you. Always remember that we are here for you to sound off at anytime. :grouphug:

[Josephine]

Very hard for you SG. Hope things improve. Yes could look into direct payments to employ own carers, but then you are in charge of finding backup if someone is ill or when they are on holiday.

That morning episode is very typical for any care agency. Someone phones in sick so they have to have another carer to cover that. Or emergencies do arise with clients and the carers have to stay longer with them. Not enough staff who are of course paid very poorly for what they do. May become worse depending on realities of Brexit.

Very hard to be a carer for a loved one and respite is so vital. Don't know if there is a Carers' Centre near you where you could get some support and advice - meet up with others in the same situation, get a free massage etc. You probably don't have time to think about that now, but down the line could prove valuable.

[jeannie13]

I'm so sorry that things are so difficult for you just now. I hope that some daycare can be sorted out for Alan as soon as possible.You really need some free time. I hope that the helpful ideas from other forum members can help.
we are all here to listen so keep posting as we all care very much for you & Alan. I'm sure Andy's Gold medal gave you a lift. Much love:grouphug:

[supergran]

Thanks so much Rona, Josephine and Jean.....appreciate your kind posts. Alan does get on with the carers and I'm grateful for the respite from morning and evening jobs. I have looked into private care and it is very expensive, much more than I'd thought so will stick with this agency and reach out for all the extra help available. I don't want to bore you all but will post from time to time with updates or when I feel like screaming. Andy went a long way helpng me to feel normal and hopefully will be able to watch his U.S. matches Thanks again everybody. Lots of love to you all. X

[angiebabez]

Hope Andys golden triumph has cheered you up somewhat Mo. Love to Alan xx

[supergran]

It did Angie. Thanks. X

[Genbrit]

Sorry SG, just catching up with posts as have limited internet where we are!!!

So glad that you post on here and have a place to vent. This is such a great group and I see they have come through again with many suggestions.

I sympathize with your situation and know it's not easy but hope and pray that you can get some relief and have some "me" time.

Hang in there, thinking of you both. xx

[supergran]

Thanks Susan for your kind message....still following your travels when I have time. XX

[Teresa]

Apologies if I have missed it, but what is SG's diagnosis? I have assumed it's some form of dementia. Don't answer if you would prefer not to.

[supergran]

No diagnosis ever given. He doesn't have dementia or Alzheimer's but has been epileptic for about 9 years but hasn't had full-blown seizure for over three years. Small episodes, which are few and far between now, bad falls have led to increased lack of mobility and some cognitive damage which doesn't help confidence in walking. He reads, watches sport and other tv programmes, can talk albeit more slowly than usual and loves going out when we can get out.

[Jan62]

Just to add something else in to the other helpful suggestions. Most areas have some kind of "dial a ride" scheme, which is usually an accessible minibus with wheelchair ramps. Our local one is run by the council I think.

It might be worth looking in to how it works in your area - I don't know if they just take the person or if their accompanying carer can also be accommodated, and in some areas it may depend on being in receipt of some kind of disability benefit (I've lost track of what they are all called these days). I know in our area it can't be used for hospital appointments etc, but I see the minibus at our shopping centre and supermarket frequently. Think it works by you phoning up to book a to/from journey, I'm not sure how flexible they are on timings and pretty sure you need to register with the service - and again, it possibly varies from area to area who is eligible to register and make use of it. But just a suggestion for you if you don't already know about it.

[Teresa]

Do you use talking books? They are brilliant for relaxing people (they send me to sleep), useful if SG is too tired to do much. The local library has lots. It might give you a bit of peace.

This organisation has loads of fact sheets about all sorts of useful stuff, which might give you some ideas.

http://www.dlf.org.uk/node

[Genbrit]

Thanks Susan for your kind message....still following your travels when I have time. XX


Glad you are managing to follow along when you can. Don't worry about keeping up even I can't do that, a month behind and I have no excuses, apart from internet connection!!!!

[supergran]

I am feeling much stronger emotionally and mentally. Having waited and still waiting since February for a ramp to be delivered phoned the Fire Service yesterday explaining that in an emergency I would be unable to get sg out of the house. Received a call an hour later and visit arranged for this morning. They have just left after installing new smoke alarms and a promise to get in touch with SS about our predicament. I have also received a call from the Red Cross regarding someone to come and stay with Alan so I can go out and occasionally take him out. Last Sunday week Tim, Sarah, SG and I went out for Sunday lunch. The Abbey's kitchen was closed for refurb so we went across the road to the Gerard Arms. We had a lovely lunch and watched the cricket. When Alan wanted the toilet found out they didn't have an accessible one despite having a complete refurbishment earlier this year. T and S took him back to The Abbey to use theirs. Yesterday I phoned Greene King Brewery and complained. Have been promised a call back. I feel like a woman with a mission now and am going to complain, make a fuss, keep phoning any agency, social services, buildings without accessibility to make my point that people in wheelchairs need to be treated just as fairly as able-bodied ones. Watch this space.

[anor]

That's the spirit, Maureen! It's a truism that unless we Brits complain, nothing seems to get sorted.

[Alis]

No diagnosis ever given. He doesn't have dementia or Alzheimer's but has been epileptic for about 9 years but hasn't had full-blown seizure for over three years. Small episodes, which are few and far between now, bad falls have led to increased lack of mobility and some cognitive damage which doesn't help confidence in walking. He reads, watches sport and other tv programmes, can talk albeit more slowly than usual and loves going out when we can get out.

I really do empathise, SG, as Mr A has fairly similar symptoms. Three years ago he was having regular minor seizures - sometimes up to 20 a day - and was diagnosed with late on set epilepsy. He was prescribed anti-convulsants and we thought that was that until one morning he woke up with severe memory loss. He knew me but his brain had jumped back 25 years. He thought we were still living in the house we lived in then, that we were still working at our then jobs and that our kids were still at school and living at home - scary stuff. Our lovely GP immediately referred him back to the neurologist who admitted him to hospital straight away. After six weeks in hospital and every test know to man, he was finally diagnosed with VGKC - a fairly rare form of auto-immune encephalitis. Basically, his immune system was attacking his brain and causing significant damage. The anti-body count in the blood of a normal healthy person is less than 100, at that time Mr A's was 4,000! Now, after three years of intensive immune-suppresant treatment we have reached a plateau stage. The brain damage is irreversible but it isn't getting any worse. Thankfully, we don't have the personal hygiene problems that you have, SG, although I do have to remind him to shave and shower every morning. His mobility is impaired and we can no longer share the dog walks that we loved. Our relationship, where we shared everything, is no more. I have to make all the decisions about the running of the house, where we go, what we do and who we see but, in so doing, make him think that they are as much his decisions as mine. He has lost all his confidence and gets very anxious if I'm not around. Sport and comedy are great on TV but serials or complicated dramas are a challenge. If I don't throw them out every day, he will read the same newspapers over and over again because he forgets that he has already read them, which is fine, but he reads the same snippets out of them to me over and over again which can be frustrating! Bizarrely, he has no problem doing the cryptic crossword or our tax returns! What is disconcerting is that he has gone from being the consummate diplomat to saying whatever is in his head - no matter what company we are in. It can be hilarious and highly embarrassing at the same time - thankfully, our good friends understand and laugh with us. Yesterday was our wedding anniversary. It was a beautiful day so I decided that we would take a trip round the island. We had a safari lunch, visiting three of our favourite restaurants and had a course in each. We took a young friend with us who helped me take the dogs for a long walk while Mr A had a snooze in the car. It was a perfect day. In the evening I asked him if he had enjoyed the day and he said, 'Why, did we go out?' - such a shame. I mourn the loss of the relationship we had but, it is what it is, and our relationship is still a good one. I tease him unmercifully and we laugh a lot. Anyway, the upshot or all this, SG, is just to say I really do understand how difficult it can be going from partner to partner/carer with little or no warning and how much being on a caring forum such as this helps you keep your sanity. Tennis, Andy and all of you will never know how important you are to me and how much you help to keep me going!

[supergran]

Just phoned a local newspaper to ask if interested in an article on accessibility for wheelchair users. The reporter I spoke to sounded interested and will be contacting the Gerard for comments. She will phone me back either this afternoon or Monday.

[Alis]

Good one, SG.

[supergran]

Alis so sorry to hear about your husband's health problems which are much worse than supergramps'. You must have been through torment but glad to hear your husband has reached a plateau. I truly empathise with you and how you have lost, in a way, your beloved husband as I have. It's both difficult and sad having to do everything on your own and your account of your lovely day out had me in tears. Unexpected ill health and the incapacity it brings is so hard. You sound very brave and I send my love to you both. At least we still have our loved ones even though they're not as they were. God bless you both.

[Alis]

Thank you, SG. I really hope I didn't come across as a moaning minnie because that wasn't my intention, I was really just aiming to be supportive. It's amazing what you get used to and life adopts a different, if somewhat unexpected, pattern. I actually feel very privileged to have reached this stage in life before being beset with any major health problems - I have family and friends who have not fared nearly as well as Robin and I have. Like you, I am lucky to have a very supportive network - including, of course, all my friends here on AMFF!

[patlowe]

I am feeling much stronger emotionally and mentally. Having waited and still waiting since February for a ramp to be delivered phoned the Fire Service yesterday explaining that in an emergency I would be unable to get sg out of the house. Received a call an hour later and visit arranged for this morning. They have just left after installing new smoke alarms and a promise to get in touch with SS about our predicament. I have also received a call from the Red Cross regarding someone to come and stay with Alan so I can go out and occasionally take him out. Last Sunday week Tim, Sarah, SG and I went out for Sunday lunch. The Abbey's kitchen was closed for refurb so we went across the road to the Gerard Arms. We had a lovely lunch and watched the cricket. When Alan wanted the toilet found out they didn't have an accessible one despite having a complete refurbishment earlier this year. T and S took him back to The Abbey to use theirs. Yesterday I phoned Greene King Brewery and complained. Have been promised a call back. I feel like a woman with a mission now and am going to complain, make a fuss, keep phoning any agency, social services, buildings without accessibility to make my point that people in wheelchairs need to be treated just as fairly as able-bodied ones. Watch this space.
Love your positivity! Well done!

[pabbers]

Glad you're feeling more positive Maureen and they'd better distribute some hard hats for those you're (rightly) gunning for :lol:.

Alis - had no idea of your predicament. Am counting my blessings having felt down in the dumps merely over arguments about our son's wedding guest list :shamed:

[Alis]

Wedding planning can be extremely stressful though, Pabbers!

[supergran]

Wedding planning can be extremely stressful though, Pabbers!

Especially guest lists.:)

[Teresa]

Alis - sorry to hear about your trials, and glad SG is feeling more positive about things. Thinking of you both.

[-J-]

Until last year that meant that the NHS would fund a flight there and back in one day for the patient and escort but, with recent cutbacks, the NHS will now only fund a three day trip by ferry and car and two overnights in hotels - seemingly this is cheaper!

... can you stand any more?????
As far as I am aware still get flight option here

[Alis]

Lucky you!

[Genbrit]

SG - Glad to see the real SG has reappeared. Well Done to you. Will be interested to see what responses you get.

Alis - Sorry to hear about your hubby as well. Don't know about you but I enjoy writing my blog but I never seem to have enough time even though retired!!!

You are both an inspiration to us all and thank goodness for Andy Murray and this forum for helping us all through bad times.

[supergran]

Hello everyone, I thought with the tennis hiatus and before you all get involved in manic preparations for Christmas I'd give you an update. It's not good news I'm afraid. Some of you already know that at long last we have a positive diagnosis for supergramps' condition. He is suffering from Progressive Supranuclear Palsy or PSP. The neurologist told us be is a textbook case displaying all the symptoms with the exception of swallowing difficulties which we can expect in the future. The prognosis is 6-7 years after the onset. He has carers coming in morning and evening and they are wonderful. No longer do I discover a wet bed after someone has left. The bed is stripped, remade and bedding put in washing machine. If there is some time after putting him to bed ironing will be done for me. But it's when I'm on my own that I'm struggling. His mobility has worsened and often has to be transferred to commode by wheelchair. I don't even try to take him upstairs now. He has to be fed now so I have my meal after him. I sometimes think he will have to go in a Care Home but when I sit next to his chair and he clutches my hand tightly I know that won't happen. Another problem facing us is the cost. At the moment with one carer coping it is £14 per hour. We have had a few days when he needed two morning and evening. Because I employ this agency Direct Payments come into the mix. A financial assessment resulted in the Council agreeing to pay £1.43 per hour for every £14 I pay. It is very worrying how our quite comfortable circumstances will be affected long term. I have been very stressed since given this news last Thursday. Looking back from the D.C. Final followed by our Christmas and New Year cruise it seems so unreal. The fall down the stairs last January, the hospital stays in the Spring and summer and the gradual deterioration have certainly made this our annus horibilis. I can't even say that 2017 will be better as with this condition it won't. I don't want to depress anyone but you have always been so kind and caring both on here and when we've met you that I just wanted you to know what's been happening and if I'm not on here as much you will understand why. Being selfish I'm dreading the possibility of no more D.C. weekends especially away ones. Hoping it won't come to that and I can still attend home ties. I'm quite good at economising. Have had to do it in the past so will face what's to come hopefully. The crying is done in private.

[AllyB]

I have often wondered how SG was doing, but didn't like to ask. My thoughts go out to you both.

[RosieBear]

Hugs Mo :grouphug::grouphug::grouphug:

[WimbledonWestie]

Remeber we are all here for you and thinking of you! :hug::hug::hug:


Indeed I was thinking about you so much while typing I managed to tip half a mug of tea all over me, the settee and floor. Hope this image gives you a little chuckle! I'm off to get out of my sodden trousers!

[lynne]

Big Hugs Maureen! :grouphug::grouphug: Big Hugs to you also Alis!!!:grouphug::grouphug:

[cazza99]

:grouphug: Supergran.

[Teresa]

Sorry to hear things have got so bad. I noticed you haven't been about as much. Is SG getting attendance allowance to help fund the carers? Are there any other sources of help you can access?

Will be thinking of you both.

[Alis]

So sorry to hear your news SG. How quickly things can change - it really has been an annus horibilis for you. I'm so glad that you have reliable help now though - that must be a godsend. Attendance allowance to help offset costs is certainly a possibility or do they call it disability living allowance these days? It would certainly be worth looking into. Take care of yourself and remember to keep your sense of humour. Sending positive vibes your way!

[lovetennis]

Thinking of you SG :hug:

[goldfish]

Sorry to hear this news SG but it's good to hear that you are getting positive help at last. Take care ��

[jeannie13]

Oh Maureen. My heart goes out to you both :grouphug: :grouphug: You know that your friends on the forum love & care for you both TAke care of your own health as well. Lots of love to you both.xxxx

[pabbers]

Thinking of you both as you know.
Yes Attendance Allowance is a must. Apply for the higher rate which covers night as well as day. I'm sure he needs help to go to the loo in the night. And amazingly AA is not means tested.....just based on health needs so even a millionaire can claim!

[Genbrit]

My thoughts are with you both, Maureen. I hope that you can continue your breaks away, as you will need to have some time for yourself. As you know I am often awake on the other side of the pond, should you need to "talk" if you can't sleep. Look into the attendance allowance, it certainly seems that you should qualify for it. :flowers::hug:

[Jennan]

Thinking of you, have been wondering how you were coping. Please apply for attendance allowance, it takes some of the pressure off. Take care of yourself as well, I found having a good cry really helped when I had the same experience with my mother.:hug::hug:

[anor]

I too have been thinking of you and Alan, so thanks for bringing us up to date, although sad to hear of Alan's prognosis. I hadn't heard of that condition. I am so pleased that you are going to DC in Canada as that will do you a power of good and always remember that we are here for you.:grouphug:

[patmoren]

I'm surprised you haven't been told about Attendance Allowance before, it was mentioned to me right at the beginning when Dave said he wanted to stay at home whatever happened.

[supergran]

Thanks to all of you expressing care and concern and thinking of us. We do get the higher rate of attendance allowance which we're thankful for but recently sg had a urinary infection and two carers were needed. At £56 per day for five days it was pretty expensive. We're now back to one thankfully. I don't want to dwell on the financial aspect, I mentioned it because of the low payment by Direct Payments which was a shock but as the Social Worker told me if you've worked hard and saved all your life then that's the result. Alan also goes to a day centre which is £24 per week and his respite when I was in Glasgow was over £400 which did involve a contribution from the Council. The point is that even with help the cost of care now and future care will be a drain. Yesterday was pretty horrific as he wanted to go to the toilet. I had difficulty getting him into the wheel chair and then couldn't manage to get him off so was too late. He was mortified and I was upset. Rang our carer and she came round. She was marvellous, cleaned him up, washed him and got him into his pyjamas eariy and did all necessary cleaning afterwards. Day to day life between care is difficult and often stressful but Alan seems to accept his condition and is always grateful. The sad thing is that he no longer reads, barely glances at the paper and even fell asleep during the England match. So very different from the man he used to be and it's only going to get worse which is heartbreaking.

[Guerkins2]

Thinking of you, SG. Your last sentence is possibly the hardest part.......it's something we can never foresee.
:grouphug:

[patlowe]

Oh Maureen, I have just read your posts. As I was reading my heart went out to you and I so wish I could say or do something to help. The best I can do at the moment is to send you my love and hugs and to reinforce what everyone has said...we will always be here for you. I do think of you often and I do notice when you are obviously not able to post on here as often. I think you are wonderful how you are coping. :hug:

[Alis]

You're doing a wonderful job SG - hold onto the good moments.

[Linda]

Oh Maureen, I do feel for you :grouphug:

[JAMES4578]

Sorry to hear the news Maureen, though sometimes having a diagnosis can help in some ways. Must be difficult to deal with though, hopefully the support here and elsewhere makes a difference.

[Josephine]

Very sorry to hear the news of Supergramps diagnosis. Very hard to know he will not improve. Wishing you every strength but I know you have that and great love between you.

[clancy]

Remeber we are all here for you and thinking of you! :hug::hug::hug:


Indeed I was thinking about you so much while typing I managed to tip half a mug of tea all over me, the settee and floor. Hope this image gives you a little chuckle! I'm off to get out of my sodden trousers!

I tipped a mug of tea all over the table, mopped it up briefly and promptly forgot about it; now have a large white water stain there!

[WimbledonWestie]

Fortunately my furniture, carpet and clothing have survived unscathed.

[banskogirl]

Thinking of you both Maureen :grouphug: so, so hard. You are doing an amazing job, which doesn't lessen the hard work, just because it is someone you love. I'm glad you have so many people to share with and to understand as much as we can. Love to you both x

[hfwardhouse]

So difficult Maureen, we're beginning to have more serious problems with my mum in law - she's going to be 92 in February and has been so fit and well for so long and is just beginning to show signs of being her age - she'd pass for 10-15 years younger most of the time. She still drives, and thinks she can drive anywhere, but with a few "incidents" over the past few months, we've had to restrict where she drives to when actually she should be stopped already. I really wish the government would have a policy of more stringent health/alertness/ability checks for older drivers as she just had to complete a form in February that allows her to continue driving for 3 years - it's ridiculous at this age .... and then her memory is starting to fail a bit - she's forgetting things she's done recently, and then there's the food .... she's a nightmare for keeping things way past their dates, stuff comes home from the supermarket and doesn't make it to the fridge/freezer for ages as she's so knackered when she gets home she just hasn't the energy to do it - if we were taking her at least we'd know when she'd been so we could be around to help, but she's a determined old bird and doesn't ask for help unless she's really stuck. She's fallen a few times recently too but when I suggested an alarm she said all the right things to me but when our farm worker came in, she said I'd suggested it and she supposed she'd have to get one .... :rolling: .... I'm the evil daughter in law apparently! It's always down to me to speak to her anyway cos my hubby tends to avoid conflict .... he's going to have to get better at it though cos she desperately needs more help .... it's so sad, she's no longer interested in the tv programmes she used to watch and is just keeping it on for company. We're not sure if we'll be able to go away this Christmas - she was meant to be coming with us, but there are stairs at my brother's and she's not good with stairs unless they're her own ....

[supergran]

So difficult Maureen, we're beginning to have more serious problems with my mum in law - she's going to be 92 in February and has been so fit and well for so long and is just beginning to show signs of being her age - she'd pass for 10-15 years younger most of the time. She still drives, and thinks she can drive anywhere, but with a few "incidents" over the past few months, we've had to restrict where she drives to when actually she should be stopped already. I really wish the government would have a policy of more stringent health/alertness/ability checks for older drivers as she just had to complete a form in February that allows her to continue driving for 3 years - it's ridiculous at this age .... and then her memory is starting to fail a bit - she's forgetting things she's done recently, and then there's the food .... she's a nightmare for keeping things way past their dates, stuff comes home from the supermarket and doesn't make it to the fridge/freezer for ages as she's so knackered when she gets home she just hasn't the energy to do it - if we were taking her at least we'd know when she'd been so we could be around to help, but she's a determined old bird and doesn't ask for help unless she's really stuck. She's fallen a few times recently too but when I suggested an alarm she said all the right things to me but when our farm worker came in, she said I'd suggested it and she supposed she'd have to get one .... :rolling: .... I'm the evil daughter in law apparently! It's always down to me to speak to her anyway cos my hubby tends to avoid conflict .... he's going to have to get better at it though cos she desperately needs more help .... it's so sad, she's no longer interested in the tv programmes she used to watch and is just keeping it on for company. We're not sure if we'll be able to go away this Christmas - she was meant to be coming with us, but there are stairs at my brother's and she's not good with stairs unless they're her own ....

How sad Jane. She really is independent isn't she? This of course can cause problems as you are aware of. I'm sure she appreciates you and everything you do but agree that she needs help. Can't believe she's still driving and doing her own shopping. What a pity about Christmas and thinking you won't get away. Dare you suggest a commode you wicked daughter-in-law?

[roytennisfan]

So sorry to hear just how tough life is for Supergran and Alis, apologies for not reading/responding before, i'm not very good on following the non-tennis threads.

[supergran]

Bringing you up to date. Alan collapsed yesterday and was taken to hospital and admitted. Seems an irregular heart beat was causing concern and more tests needed. On top of that I have made an error setting up Direct Payments. Haven't put enough in separate bank account and Standing Order I set up is not enough. Financial Dept at St Helens was very helpful and I will be able to sort it. In the meantime now looking for another agency as this one is far too expensive. Feeling very low, stressed and rather stupid.

[Jennan]

Oh dear SG, feel for you. I am sure the mistake was made because you are so stressed. At least it's easily corrected. Hope you find another agency soon.

[hfwardhouse]

How sad Jane. She really is independent isn't she? This of course can cause problems as you are aware of. I'm sure she appreciates you and everything you do but agree that she needs help. Can't believe she's still driving and doing her own shopping. What a pity about Christmas and thinking you won't get away. Dare you suggest a commode you wicked daughter-in-law?

Eh no :rolling: that would go down like a lead balloon ... a friend of her's suggested she go into respite when we're away on holiday - I'm amazed they're still speaking :rolling:

[hfwardhouse]

Bringing you up to date. Alan collapsed yesterday and was taken to hospital and admitted. Seems an irregular heart beat was causing concern and more tests needed. On top of that I have made an error setting up Direct Payments. Haven't put enough in separate bank account and Standing Order I set up is not enough. Financial Dept at St Helens was very helpful and I will be able to sort it. In the meantime now looking for another agency as this one is far too expensive. Feeling very low, stressed and rather stupid.

Don't feel stupid - you're certainly not that - these things are always a minefield and you'll get there :grouphug:

[Caro]

Thinking of you as I hope you know Mo. The deterioration is so hard to cope with and you must be stressed, of course you are, who wouldn't be?! Sending lots of :hug::hug::hug: However bad you feel, you are doing an amazing job. The hardest job in the world when it's someone you love and it's 24 hours. I hope family will be with you for Christmas.

[supergran]

Thinking of you as I hope you know Mo. The deterioration is so hard to cope with and you must be stressed, of course you are, who wouldn't be?! Sending lots of :hug::hug::hug: However bad you feel, you are doing an amazing job. The hardest job in the world when it's someone you love and it's 24 hours. I hope family will be with you for Christmas.

Thanks Carolyn. Really need some hugs right now. MurrayAOne and Juicy are such kind and thoughtful friends with lifts to hospital and back and others have volunteered also. We will have company at Christmas as Tim and family plus Ethel, Sarah's mum will be here Christmas Eve until Boxing Day. So no cooking for me which will be lovely as well as a family Christmas. Peter is picking me up at 2.45 so hopefully will find out all I need to know this afternoon.

[patlowe]

Maureen....:hug: :hug::santa:

[jagmad]

Thanks Carolyn. Really need some hugs right now.

Here's a couple from Me 'N' Lynne.
:hug: :hug:

[Alis]

So sorry you're going through such a bad spell at the moment SG. I really hope Supergramps is making good progress and is home in time for Christmas.

[WimbledonWestie]

Aw Maureen you are well overdue a lucky break. Thinking of you! Xx

[supergran]

You are such lovely people. I'm so glad I joined this forum and got the chance to have friends like you. Thanks for caring, it means lot. Alan now on Cardiac ward so hopefully I'll have news tomorrow.

[supergran]

Aw Maureen you are well overdue a lucky break. Thinking of you! Xx

Thanks.........Well I did get to see Andy win Wimbledon.:big grin:

[anor]

Oh Maureen, I hope you get some reassuring news about Alan sometime soon. :hug: :hug:

[Genbrit]

:hug::hug::hug: for you Maureen. Wish they could be in person. Thinking of you. :flowers:

[clancy]

Hope your husband is improving and will be home for Christmas. x

[supergran]

The latest on supergramps: He is still in hospital, has been seen by the cardiologist, had chest x-ray, brain scan and Echo heart scan. On Tuesday when I got there at 4pm he looked dreadful. He was drowsy and his hands were shaking uncontrollably. I had never seen this before. Sometimes his hand shakes when he holds his breaker but this was a new thing. I grabbed his hands and gradually the shaking stopped. He seemed very vague and couldn't focus. I actually thought to myself that he looked like he was dying. I called the doctor who was at the station and he came over. He introduced himself as the cardiologist and explained that Alan was being monitored for the heart irregularity. We discussed a change in medication but he couldn't explain the violent shaking which had stopped. He told me he would be in for a few more days. On Wednesday when I got there Alan seemed more like his own self and I shaved him and did his nails. Visiting is from 1-8 and I always go at around 4 to 4.15 as I like to be there for mealtime as I feed him and therefore am sure be has eaten a full meal................................Tim and family arrived about 6-45 which cheered him up, (Tim's 50th birthday) and then he said he wanted to get out of bed to go to the toilet. I spoke to a male nurse, asked for a commode and was told he would be all right with his pad! He was then called to another bay. I was furious and spied the student nurse I had chatted with earlier, explained that Alan uses a commode and the toilet at home and that I wanted him out of bed and on a commode.She then went to find someone to help her. A nursing assistant arrived and the three of got him out of bed and on to the commode. We all stayed with him while Tim and family were outside. He stood with difficulty while he was cleaned but did stand. He was then helped back into bed. We left him bust after 8 looking comfortable and ready for a nap.....................................On Wednesday morning I had received a call from a physio who wanted me to answer questions regarding Alan's condition, mobility and how we managed at home. I answered as patiently as I could while thinking all this has been said countless times before to the physiotherapists in Whiston. Yesterday received another early morning call from another physio asking me about his condition, mobility etc. I quickly told her I had been through this the day before. She said that call was from a student and she needed to know. When I asked why, and didn't the student pass on the information she didn't know what to say.So I gave all the information again. I then told her I wanted him out of bed during the day and using a commode. She said they'd sat him up with his feet out of the bed but he wasn't steady. I retorted that he wouldn't be steady sitting unaided and not having been out of bed for a while. She responded by asking me if he stayed in bed all day at home. I was becoming very angry and told her he comes down every day and stays down until he goes to bed, that he walks with zimmer to his commode and perhaps she should have talked to her student. I ended the call when she said that they would decide when he would be discharged and told her if they didn't realise what PSP meant and hadn't concluded he wouldn't improve I didn't want anything to do with them.............................I then phoned the ward and it just rang out until it stopped. Rang again, sane thing so phoned PALS. No one there to take my call so left a message complaining about the physiotherapists and saying that they seemed to rule the roost in the ward. Feeling angry and frustrated I rant the hospital again explaining my difficulty getting through to ward and PALS and asked to speak to someone in charge of the hospital. Was told she would buzz the Matron. I was answered by the Staff Nurse on 1D. We had a long chat and I gave her the further information from the physio i.e. that the two staff had had great difficulty getting Alan on and off the commode and that they are too short-staffed to do that when needed. She asked about the staff and I told her they were lovely, very caring, cheerful and efficient and had not complained to me. Staff was very annoyed and said she had no right to say those things, even more annoyed about the shortage of staff comment........................................Got there yesterday and supergramps looked like his old self. He told me I should have been there earlier as 1. a new recliner chair was now next to his bed and 2. a man had been to see him telling him he wanted to speak to me about his mobility. Don't know who he is because I didn't see him but when he asked Alan if I came in every day the old beggar said I visited 'most days''! When I said I'd been every day he replied "You have not!" Later another cardiologist came to see us and explained he was still in as still monitoring heart and discussed him wearing a monitor at home. But we'd have to wait as queue for said equipment and other heart patients had greater need which I fully understand. But he did say it could be worn at home. He also told me he wouldn't be discharged before Sunday and wasn't really sure when. I told him briefly about the physiotherapists and said that when he and his boss deemed Alan medically fit I would be taking him home despite the physios. He said I was entitled to do that. Tim came straight from work and assured him that I'd been every day adding 'You know I wouldn't stick up for her if she was neglecting you". We left about 7 and Tim and I had a nice couple of hours together before he went home. ..................Sorry this is lengthy but thought I'd keep you up to date and it helps writing it down. Just read this so apologise for typo errors but am not going through correcting them as it still makes sense.

[goldfish]

What a struggle SG. So sorry that every situation involves so much stress and lack of appreciation for what Alan can still manage with help. It's great that you have so much support from your family and friends and comfort from those on here, although so far away. Well done for fighting your corner and good luck with getting Alan home soon. :grouphug:

[anor]

What a trial, Maureen and goldfish has expressed my feelings too.:hug::hug:

[Alis]

So, so frustrating for you, SG - it is so wearing to have to keep repeating yourself all the time when it's all so unnecessary. It would help so much if all the staff concerned with SG's care would just take the time to talk to one another! Thank goodness that he does have you fighting his corner. I do hope he's home soon and things settle into a more manageable pattern for you both.

[pabbers]

:shocked:

[Linda]

It all sounds incredibly stressful :grouphug:

[lovetennis]

I really feel for you SG. It must be so frustrating and tiring, but there's no doubt you are doing absolutely everything possible to help Alan. The system can be so draining can't it. I do hope Alan is more comfortable and that he will be home soon. Sending hugs :grouphug:

[Teresa]

Really sorry to hear this. My experience of physios is that whilst they take no prisoners, they are usually the more together of the medical staff. I hope SG is home for Christmas, and things get easier for you.

[patlowe]

Thanks for detailed update Maureen. You are absolutely spot on to fight your corner, but what makes me mad is that you shouldn't have to. You have enough stress to contend with without the extra stress of fighting your corner. I'm glad Alan seems to be improving and I hope it continues. I hope you can keep thinking ahead to DC in February which will be a well earned break for you and something to look forward to. In the meantime you take care. :hug:

[WimbledonWestie]

Alan is one lucky man having you fight for him at every turn. Hope things get less frustrating very soon!

[banskogirl]

Oh Maureen, so sorry this is being made so hard for you. As if it isn't bad enough to start with! Thinking of you both and hoping Alan continues to improve and able to be home with you at Christmas, if that is what you think is best. x

[supergran]

Thanks for all messages. I do want him home for Christmas and physiotherapists is a banned word in this house. Told today they had been to see him but as he was asleep they left and will see him tomorrow. Sleeping is a symptom of PSP so if he's asleep tomorrow what will they do? Have left instructions they are to stay away from him!

[Teresa]

Once, and only once I got the better of physios. It still gives me great satisfaction. I was working in a special school, and the kids refused to go for their physio because I was about to do a fish dissection with them, and I had promised they could all have a go with the scalpel. Given all of them were physically impaired and been under the knife themselves it was very Theraputic for them. It was a great joy that I could really annoy a physio without them being able to get me. Usually I have a rule of never arguing with physios as they have unpleasant and painful means of retribution.

[supergran]

Once, and only once I got the better of physios. It still gives me great satisfaction. I was working in a special school, and the kids refused to go for their physio because I was about to do a fish dissection with them, and I had promised they could all have a go with the scalpel. Given all of them were physically impaired and been under the knife themselves it was very Theraputic for them. It was a great joy that I could really annoy a physio without them being able to get me. Usually I have a rule of never arguing with physios as they have unpleasant and painful means of retribution.

Thanks but I really have had my fill of physiotherapists. As I was told last July he had reached his baseline and they couldn't do anything else for him I wanted nothing more to do with them. Now we have the diagnosis of PSP we have a clearer picture of what lies ahead for Alan. He's been in 1D since Tuesday evening, they didn't see him in the Assessment ward where he was from Monday. Two phone calls and one visit when he was asleep is all they've done. They don't frighten me and I know my rights. They can make life difficult regarding discharge as they have done in the past but no more!

[Alis]

How are things SG?

[supergran]

People once again getting threads mixed up. There are two namely Health and Ailments for info and chat about how we are and In Sickness and in Health to discuss, if you feel the need, any health problems or good news regarding health of husbands, wives, partners. Thank you. I will be bringing you up to date about supergramps when the AO is finished and before I leave for Canada.

[Linda]

I'd never noticed there were two threads!

[Sallydaisy]

I'd never noticed there were two threads!
:doh:

:help:

[supergran]

I'd never noticed there were two threads!

The Health and Sickness thread is one of the original ones on this and previous forum. I started t'other one as had lots to tell you about supergramps and thought others might have info about loved ones also. Linda, you've made me smile.:lol:

[supergran]

How are things SG?

Much better for me, more or less the same for the lovely supergramps.

[Alis]

So glad that you are getting the help you need SG. Enjoy your trip to Canada - you certainly deserve it!

[supergran]

Thought I'd bring you all up to date with supergramp's condition. As some of you know from Facebook and Twitter Alan went back into hospital on the 22nd December after being discharged on the 20th. The carers couldn't wake him up to get him out of bed. They called me and as they are gentle and won't shout they needed me. I couldn't wake him after shaking and shouting in his ear. Ambulance called, paramedics tried, did all tests on him but he didn't wake up. Transferred to ambulance , still no response. They told me to stay at home and follow later. Phoned Tim and Sarah. Tim said he'd leave work but told him not to. Sarah, who had finished for CHristmas and who was going to shop and bring everything here immediately left for the hospital. She rant to say he was still unresponsive when she got there. He woke up in the middle of the afternoon! She'd already told me to have the day off as she would stay. She left the hospital around five, did all the shopping then dropped it off here and went home. He was moved to an Obs ward that night and I went the next day as he was being moved to 1D.........................So he was in over Christmas. On Christmas Day we all went in about 12, opening presents, pulling crackers, taking photos and keeping him smiling. He enjoyed a full Christmas lunch and was ready for a sleep when we left. We ate later and at about 5.30 having had champagne, prosecco and other beverages accompanying our Christmas dinner and before pudding etc I decided I wanted to go back. Everyone agreed to come with me. We managed to get a minibus and a lovely driver who was on his last call and agreed to wait for us and bring us back. Really lovely of him. When we walked in Alan's first words were "I knew you'd be back" We were so glad we did!.............................After Christmas was when things weren't so pleasant, indeed later on they became quite stressful and upsetting.

[supergran]

The festive season over and the hospital was back to normal with doctors' rounds etc. Speaking to one doctor one afternoon he told me that in the light of Alan's condition I had two alternatives, namely increased care at home with him downstairs in a hospital bed or a Nursing Home. I agreed and said obviously we both wanted the first. I did tell him that a senior OT assessor had visited our home unannounced to assess him going upstairs on lift with carers. This was on the 8th December. She watched Alan getting from chair, walking with zimmer with his two carers, getting on the stair lift, getting off, into bathroom and then bedroom and bed. Her immediate reaction was that this was too much for him and he really needed to be downstairs in a hospital bed. I told her I had been looking online for one but she said it would be provided. I asked if it could be done after Christmas as I was having five visitors to stay and she agreed. The doctor said the arrangement sounded fine................Alan was looking well but did sleep a lot and his appetite seemed to have increased. Found out later this is a symptom of PSP. Strange but true.I visited every day between four and seven, Fed him his evening meal, read articles about cricket and rugby and held his hand when he drifted off as he did often. Just before New Year I was told he was medically fit for discharge......................................... .
.....One morning at the beginning of January had a phone call from a nurse on the ward who told me she had been on nights, had just met Alan and would like to ask a few questions. Same old questions about him though she wasn't aware of PSP when I asked her. Her answer she had been on nights and was ringing as a kindness to me! She then asked about care and when I told her I was in the process of moving from private back to social services she said SS wouldn't help me to get care package as I was doing it privately. Patiently I told her she was wrong as a Social worker was in touch with me and helping. She replied that he was no longer under St Helens but Whiston. Of course I knew this.....I'd had enough experience in the last few years....... I told her she was wrong and by this time I was getting very annoyed. She said she didn't like my tone and I told her I didn't like what she was staying. She then said she phoned me out of the goodness of her heart after coming off nights and had never been spoken to like that. I retorted that she was very lucky given that she was completely wrong in what she was saying and I put the phone down..................

[supergran]

Next came what I will call THE BATTLE FOR THE BED or how to fight the system when you're at the end of your tether!!

[Alis]

Oh, SG - I can understand your frustration. I do hope your story has a satisfying ending.

[patlowe]

Maureen...:hug:

[goldfish]

So stressful caring for loved ones and trying to get the best possible care for them. You have really been tested. Thank goodness you have a supportive family and the tennis interest to give you the occasional joyful moments. :banghead:

[supergran]

I have been under a lot of stress, been heartbroken at times and have been driven to rage over the past few years but what happened in January before Alan was discharged on the 13th tested me to the hilt, reduced me to tears (in private) many times and turned me into a woman of steel fighting intransigence and professional condescension..................................... ..One morning I received a phone call from a physiotherapist. She was bright and cheerful and told me that Alan was ready for discharge. She explained that she had seen him that morning, that he had got out of bed on his own using a Zimmer and had walked to the toilet unaided. I questioned this and she assured me that someone was with him. I replied that he was having a good day but that it could change later. I asked her about the bed and she said that in her professional opinion there was no need for a bed and she would not be authorising one. My heart sank and I immediately felt so angry. I asked fairly politely why it was up to her and how many times she had seen him and for how long. She told me that she'd only just met him, it didn't really matter how long she was with him as this was her professional diagnosis. I became very agitated and asked who put her in charge of decisions denying something that others had agreed he needed. She said that the District Nurses would not authorise a bed either as they only provided them for palliative care. I questioned her use of vocabulary saying that my husband had been diagnosed in November with a condition he'd probably had for over three years and prognosis was five to six. She wouldn't be moved and said I could buy one but one would not be provided as in her professional opinion he didn't need one. I told her the conversation was ending and cut her off. I immediately burst into tears, sobbing and felt in total despair.

[supergran]

I immediately rang my son at work. I only ever ring him if Alan has gone to hospital. He answered and I gasped out my news sobbing throughout. He told me to stop crying and asked if I was angry telling me to channel the anger and ring the hospital straightaway. After calming down and collecting my thoughts I did. I was put through to PALS and a very sympathetic lady said she would go to the ward and ring me back. She phoned later and said he would be getting a bed. I was so relieved and happy going in that afternoon but my relief and happiness were short-lived when I arrived on the ward.

[greatunclebulgaria]

aww Maureen, I have followed your journey quietly, privately and whilst I can't know the depth of your suffering or feel your pain, I have thought of you often and hoped that whilst there may be no miracle cure, that hopefully Alan was comfortable and at peace in his world and still able to enjoy your company, and that you would be able to take comfort and support in the fact that the support network that has been built around you both over the course of this wretched journey you are on, would be working in your favour and be the best this country could provide :doh::crying::crying::crying::crying:

[supergran]

One of the nurses told me there was still doubt about the bed. Physiotherapists still saying he didn't need one. I asked her what she thought and she said all the nurses were on our side and he did need one. I spoke to Sister and she said she was going to discuss it with Matron. In front of both the nurse and Sister I told them Alan would not be leaving the hospital unless we had the bed, that if they brought him home in an ambulance I wouldn't be in. I said you need to pass this on to people in charge of the hospital and they agreed. Once again arrived home feeling depressed.

[supergran]

Break now for Unforgotten. Supergramps watching Super League.

[greatunclebulgaria]

pleased he is enjoying his rugby tonight:thumbup:

[Linda]

Oh dear Maureen, what a lot you have had to put up with. It strikes me that it might be best if he were in a care home and you could visit him every day and not have these stressful battles.

[supergran]

Over the next few days it was the same.....going in every day and told no bed. I told the staff nurse I would contact the press, local and national and her response was that I should. I asked as I had asked before why nobody had been in touch with the OT assessor who had authorised the bed. Social Services then became involved as they have to put in place a package of care before discharge. More waiting while an agency was found as I didn't want the original one, the one that had been inefficient and influenced my decision to do it privately with Direct payment. All that had to be cancelled before new package put in place. More visits and more paperwork and still no bed. Then one afternoon was told there was going to be a meeting with Ward sister, physiotherapist and Matron and would I like to be present. Obviously my answer was yes and I couldn't wait to meet the physiotherapist. Well, there was no meeting as the next day I was told bed plus accessories would be delivered on the 12th January. I was so relieved but felt quite drained after all the time fighting for it. And so there is a happy ending well, wasn't too happy about having to get rid of my dining suite to change room around to accommodate the bed. Alan was brought home on Friday 13th of January with increased care in place. He now has carers morning, lunchtime, teatime and bedtime. I do not move him at all. I don't toilet him any more and if I'm feeding him when they arrive they take over..................They are all lovely young people and seem to genuinely like Alan and he likes them. The only battle I have now is preventing him trying to get out of bed which can be worrying. I've told him repeatedly if he falls and ends up in hospital he may not be allowed home again. His condition has deteriorated since autumn and he has good days and bad days. Speech is deteriorating as is focussing his eyes. He sleeps a lot also. But we are coping now and being positive,looking forward to spring and summr when we can get out together. He's at the Kershaw Centre tomorrow so I'm having my hair done and changing Canadian dollars. One last thing.......I rang and asked to speak to boss physiotherapist and complained very strongly about that one. I suggested more trainings in speaking to relatives and expressed concern about quick diagnosis when not fully aware of patient's condition. I also said an apology would be nice from said physiotherapist......I'm still waiting.

[supergran]

Oh dear Maureen, what a lot you have had to put up with. It strikes me that it might be best if he were in a care home and you could visit him every day and not have these stressful battles.

It would not be best as you put it. The battle was for the bed which we now have. I do not know what will happen in the future but he is staying at home with me where he's happy.

[jagmad]

I rang and asked to speak to boss physiotherapist and complained very strongly about that one. I suggested more trainings in speaking to relatives and expressed concern about quick diagnosis when not fully aware of patient's condition. I also said an apology would be nice from said physiotherapist......I'm still waiting.

Hope you're not holding your breath on that one SG?
Also what about the lovely nurse who rang you up out of the goodness
of her heart, to tell you incorrectly, you was wrong. Just to add to your woe's.
Does she know she owe's you one too, and needs more training?

[supergran]

Hope you're not holding your breath on that one SG?
Also what about the lovely nurse who rang you up out of the goodness
of her heart, to tell you incorrectly, you was wrong. Just to add to your woe's.
Does she know she owe's you one too, and needs more training?

I did speak to the Ward Manager about her. She was very sympathetic and annoyed with the nurse and assured me she would speak to her.

[supergran]

aww Maureen, I have followed your journey quietly, privately and whilst I can't know the depth of your suffering or feel your pain, I have thought of you often and hoped that whilst there may be no miracle cure, that hopefully Alan was comfortable and at peace in his world and still able to enjoy your company, and that you would be able to take comfort and support in the fact that the support network that has been built around you both over the course of this wretched journey you are on, would be working in your favour and be the best this country could provide :doh::crying::crying::crying::crying:

Thanks Dawn for your lovely post. I do appreciate your kind concern.. We are both happy he is at home and care etc is running smoothly. I can't leave the house because he can't be on his own but the two days he attends the centre gives me the opportunity to get out. Everyone at the Nursing Home was very kind and I spoke to a few people before I brought him home on Wednesday. He told me they all wanted to meet me as he'd told them how fantastic I was. We don't know what the future holds for us but we'll face it optimistically and in May we'll celebrate our 53rd wedding anniversary together in our home. Thanks again. X

[supergran]

There will be no more updates unless something happens. Thanks so much for your kindness and being with me during the last few years providing support and loving concern. I know that you will be thinking of us as we face what is ahead. My heartfelt thanks to you all.:thanks::thanks::thanks::thanks:

[Keeptheheid]

Oh my goodness, that sounds like my poor Mother, she saved the NHS a fortune as the help she received from carers was limited and she had to provide the lions share of it. I could weep for you as you seem to be trying to handle this all on your own, at least my mum had me and my sis to help give her some rest-bite. I don't know if the service is available where you live, where SG could go in for rest-bite to give you a break. I really hope you get a solution soon.
On the subject of Andy he really is a wee source of inspiration as his battles on court certainly helped me through a difficult time, God that sounds over dramatic but it is the way he never gives up, his attitude and coming back from some epic losses, just encourages you to carry on. These days I just enjoy watching him reep the benefit of all his hard work and determination and being where he belongs at No1.

[Alis]

Full marks for tenacity and sheer b*****mindedness, SG - fighting the system is never easy and I take my hat off to you. I hope you can now enjoy some quality time in the privacy of your own home. Savour every minute you have together and keep smiling. England are still on track for the Grand Slam. .............. as are Scotland, of course! ;) :thumbup:

[jagmad]

There will be no more updates unless something happens. Thanks so much for your kindness and being with me during the last few years providing support and loving concern. I know that you will be thinking of us as we face what is ahead. My heartfelt thanks to you all.:thanks::thanks::thanks::thanks:

No. Thank you for everything regarding your ordeal SG.
Sometime we get carried away with our own lives and it takes stuff like this to ground us all.
:thumbup::worship::flowers::flowers:
Hope to meet you (in the flesh) soon.
All the best: Pete N Lynne
IMHO.

[supergran]

No. Thank you for everything regarding your ordeal SG.
Sometime we get carried away with our own lives and it takes stuff like this to ground us all.
:thumbup::worship::flowers::flowers:
Hope to meet you (in the flesh) soon.
All the best: Pete N Lynne
IMHO.

Thank you so much. Your kind words are really appreciated.

[traveller7]

Thoughts as always with you and Alan. I dont get on here now much but follow your twitter for updates. Glad he is at home its so important to be in home surroundings. X

[supergran]

Alan taken into Whiston Hospital on Wednesday morning. Unresponsive, slumped, no verbal communication, very pale. In A&E hub told not a stroke or heart attack. Went for brain scan and x-rays on chest and pelvis. No change in brain but evidence of chest infection. While I was with him and doc left us fir a while he looked terrible. Eyes open but no focus and breathing shallow. I was holding his hand really thinking he was leaving me. Later he slept and when moved to Obs ward about 7 seemed much better. Yesterday almost back to normal. Nil by mouth after breakfast as waiting for sodium levels testing. Hadn't been seen when I left at 7. Could be moved to another ward sometime today. On the bright side I get to sleep without alarm, eat when I want and no laundry or payments for Care and Centre. Every dark cloud.........

[roytennisfan]

Thinking of you, must have been some terrible hours, as always you try to see the bright side, take care

[patlowe]

Thinking about you Maureen. Not easy for you. :hug:

[anor]

Hope you get some encouraging news today, Maureen. Take care. :hug: to you and Alan.

[goldfish]

Good to hear there is improvement. Rest whilst you can.

[JAMES4578]

Sorry to hear, hopefully Allan continues to improve-must've been a horrendous experience though. Glad you try and stay positive though Maureen.

[Alis]

So sorry to read this SG - I really hope you have more encouraging news today.

[Elizabeth]

So sorry Maureen, thinking about you both.

[Linda]

:grouphug:

[Teresa]

I hope things settle down for you both soon. Thinking of you.

[supergran]

Told via phone call he would be home today. Sometime this afternoon but couldn't give me exact time. So cancelled my hair appointment which was at 3pm and waited. At 4 was told still waiting for antibiotics from pharmacy. At 5 pm told he was being kept in as platelets were low. Got ready and went to hospital. What ensued was rather farcical. When I arrived yesterday afternoon he was nil by mouth waiting for salt test. Querying and asking for explanation of salt test was told sodium levels and nothing to worry about. Today asked Staff Nurse why he had to be nil by mouth until this morning for salt/sodium test. She looked at me in amazement and then apologised. It was SALT test i.e. Speaking and Language Test to ascertain swallowing and aspiration as well as speaking. The verdict is that he has the onset of disphagia and his diet has to be modified Also aphasia which means slowness of speech and difficulty with communication. Both serious symptoms of PSP So his condition seems to be progressing quite quickly now. Just keep us in your thoughts and prayers. XX

[WimbledonWestie]

Absolutely. School now shut for hols but when we are back will get my wee lovelies (actually they are now rather tall too cool for school P7s - though I love them to bits ) to pray for special intention. Much church going over the Easter period so you are getting extra prayers.

[patlowe]

Will certainly do that Maureen. xx

[Alis]

My thoughts are with you too, SG.:flowers:

[Genbrit]

Thought and prayers for you both Maureen xx

[clancy]

Loads of thoughts and prayers are winging their way to you and Alan. God bless. x

[Linda]

My thoughts and prayers are with you both. xx

[anor]

My thoughts too are with you both.

[Jan]

Likewise, SG :flowers:

[jeannie13]

You are always in my thoughts & prayers, Mo. You have lots of folks on here who care about Alan & yourself Hope this helps Take care of yourself:flowers:.

[lovetennis]

Thinking of you SG :flowers:

[Jan62]

Sorry to hear this latest news SG. Hope Alan can come home soon. Thinking of you both xx

[supergran]

Alan still in hospital. He has Community Acquired Pneumonia or CAP to use medical jargon. Now on antibiotics given in liquid form and a "soft diet". Asked if I had a blender. Well, yes I have but supergramps is the only one who's used it! Some meds now changed to liquid form. I've enjoyed some white, dry liquid tonight with MurrayAOne, JerryD and KevD who drank orange juice....eventually! Thanks for all your lovely posts. They mean a lot. The Flag will be in Rouen folks. Have a wonderful time. XXXXXXXXXXXXXXXXXXXXX

[anor]

Thanks for the update, Maureen. I hope Alan gets home soon. Glad you had good company last night and we'll all make sure that your flag is to the fore in Rouen.

[Caro]

Thinking of you both as always Mo. Take care xxxx

[JerryD]

It was lovely to see you Maureen, and Pam. I hope Alan is home soon. I will take care of the flag and bring it and your tshirt back to you. Hopefully along with the win. Take care of yourself, and know that we are thinking of you both. See you soon xx

[Mickey]

My thoughts and prayers are with you Maureen at this time. Hopefully the antibiotics will kick in and that you will have all the support you need when Alan gets home.:flowers:

[supergran]

Do you know what.....I love you. This Forum is so important to me and d my friends on here mean so much.

[supergran]

What ever some people thought in the past.....and they know who they are....... You are important to me, especially now. Thank you all. XX

[Alis]

Do you know what.....I love you. This Forum is so important to me and d my friends on here mean so much.

I have never met you SG but I know exactly how you feel. I really hope Alan is well enough to come home soon.:flowers:

[Genbrit]

Hope the antibiotics work soon and Alan can come home, SG. You'd better start practicing with the blender, maybe cocktails to start. :thumbup:

[Teresa]

Hope things start to get better. Have you got one of those stick blenders? Good for channeling your inner frustration, infinitely easier to clean than the other type, plus a lot less pratting about. Thinking of you both.

[clancy]

I remember how kind you were to me when I first joined the forum - advising me what to say/do and what not to! Take care of yourself. x

[supergran]

Supergramps taken into hospital last night. After enjoying a really lovely day he developed a very high temperature and was very lethargic and out of it really. Called the ambulance and before it arrived he projectile vomited. This is the second time only that Alan has vomited. The first time was not long after we were married and after a day and evening playing and celebrating rugby he came home and was sick on a sheepskin rug, a wedding present!:furious: Never known him to be sick since. The carers were with us and they were fantastic. He had a chest x-ray and the usual checks in the resuscitation area and was hooked up to the machine monitoring vital signs and on a drip. He hardly woke up even when the doctor shouted in his ear! I was told that they would have to do cultures as he didn't really know what was wrong. Eventually he was admitted to 1C where he has been before for observation. I left him after 3 am and he hadn't spoken to me. He was fast asleep snoring his head off.:) I've hope you've all noticed that once again he's in hospital when Andy is playing!:grrr:

[clancy]

Another worrying episode for you Maureen; hopefully things will get back on an even footing quickly so that you can enjoy the Madrid tournament. xx

[Teresa]

Sorry to hear that. Hope they sort him out and he is back home soon. Millie the mongrel sends a woof.

[Elizabeth]

So sorry to hear that Maureen, hope Supergramps is home soon.

[patlowe]

Once again, my thoughts are with you Maureen. I can't tell you how much I admire how you are coping and how you deal with this very difficult situation. You take care.:angel:

[Alis]

Oh dear - so sorry to hear your latest news, SG.:flowers:

[anor]

Sorry to hear that Alan has had to go back to hospital, Maureen, hopefully not for long. :hug: :hug:

[WimbledonWestie]

Big hugs Mo!

[JerryD]

Sorry to hear that, I hope he is back home with you soon and that you get as much rest as possible before then. Take care of yourself xxx

[greatunclebulgaria]

aww Mo sending all my love and best wishes to you both :hug::hug::hug::love::love::love:

[goldfish]

Hope there is an improvement soon SG. Thinking of you both.