I cannot believe it is 3 weeks since I moved M into a nursing home. It has been a steep learning curve for both the home and for M and me. Not as easy as I thought to settle into the new routine, still not sleeping full night but getting there though waves of tiredness still hit on a daily basis but no longer debilitating. M has not settled fully but as she now knows I come daily, for as long as she needs, she no longer gets agitated when I go. She gets no where near the attention I hoped but the staff are caring and do check her fairly regularly.
M's present passive state means the staff have been lulled into a false sense of security so when she started choking (luckily I was there) the alarm cord was initially ignored until I joined in with M's noise (ex parade ground commander I got attention). They had the correct approach and quickly sorted her but I note they have become a lot more attentive. I was asked again about PSP symptoms will she choke again, yes, will she fall out of a chair if left unattended yes, can she tell them what she needs no, can we leave her in bed all day no, can she help herself no, does she have dementia NO, can she understand us Yes. They are trying to come up with a monitoring regime that fit into their staffing.
M is bored very little stimulation as M is unable to relate to old ladies in their 80/90's and they to her. I know I cannot take her home and that this is the best of the homes near us but I think there must be a better solution, but what. The nursing home is a place of safety and allows me quality time with her without the constant disturbed nights wearing me out.
I know I could take her home but could I care for her 24/7 without breakdown? I know the answer is unhappily no. We have to make this work.
There are a number of good points to balance the cons, if I tell the staff I want to take M out they get her ready much easier than me doing single handed, the access to the sea shore is easy and M seems to enjoy the sunshine and sea sounds. Her mum comes round to see M from her care home round the corner at least twice a week, both enjoy this as not possible for most of the winter. Taken M to Bodnant gardens for the magnolia and daffodils a couple of times so much easier than when at home to organise and carry out the expeditions into Snowdonia.
Sorry to sound down but not what I hoped but it is better than it could have been.
Best wishes Tim
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Amilazy
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Hi Tim, sorry to hear about you and Ms challenged with PSP. I hope the nursing home can find ways to be more attentive and stimulating for her, it is so frustrating when wrong assumptions are made about the condition like the sufferer having lack of awareness etc. I'm at a difficult cross roads too and a nursing home is one of options but I feel mum is not ready for that yet. Do you live in Wales? I ask as we are currently in England but wanted to move home, but have been told there is no 24/7 home care available so it's home or I continue doing all the care. Whereas in England they will provide extensive home care. Have you found this to be the case? I hope you're getting some rest and that M is settling in, your trips out and loving support I'm sure is doing more than you realise. Best wishes
Don't worry about sounding down. This is a major life change, and you need time to get used to it - and to get some rest! That is going to take a while.
It's only been three weeks. Gradually I'm sure the staff will learn about your wife and she will settle in. I bet things will get better once they come to understand the disease and what your wife needs.
I'm glad for you that the expeditions are easier. That alone must be worth quite a bit. I know how long it takes me to get my guy up and down, and he is capable of helping, so having the help with that will make your time together more enjoyable and valuable first to last, right? And your not being frayed to the breaking point is not a small consideration!
It's really nice that her mother can visit, although that must be sad for her - seeing a child ill and suffering is about the worst thing in life, even if the child is well into adulthood. How many other residents are there? In my experience, there is usually one happily officious person about who might be willing to visit with M now and then, once it's known that she is aware and in need of company. Is that a possibility?
In any case, you did the right thing, making this arrangement, and you need to carve out some time now to take care of yourself, too. Rest, breathe, do something you really like. Love and peace, Ec
Hi Tim, You are both still getting used to new experiences so things will seem difficult at first. When you think of how many years you have lived together, three weeks is nothing. I hope things will be easier for both of you as time goes by. It's good you can visit daily but are also free to do things you want to. You know you couldn't have coped much longer as you were and you being ill wouldn't be good for either of you.
Hi Tim, lovely to see a photo of you both and in the town we lived in for 15 years, you are near the life boat station , we walked that walk most summer evenings, I think I know the place that M is in, it's lovely. my hubby comes home from 2 and 1/2 weeks respite in a lovely nursing home, care package now in place, I know just how you feel, I spent every day visiting him for all but 2 days, I felt that I had to be there to explain, just as you are doing, about the condition, next time he goes for respite they will know. I was surprised to be told that there is another permanent resident there with PSP, I think I spotted her before I knew, Her man is so attentive and fusses just like me, it made me think of you and M. This PSP world is spreading I'm sure, We have been invited to visit the home at any time and I plan to and get to know the pretty lady, who is not elderly, and spread the word xxx
Hi Tim. I had been wondering how you both were. cant imagine how tough it must be for both of you
Xx
Tim sounds like you are doing brilliantly to me. I cannot believe it is almost four months since C died and I am still sleeping 8-9 hours each night and 1-2 in the afternoons. It will take a lot of time for me, or you, to find our new normal.
Still early days for you both, and you will settle into a routine that suits you. I spoke to the PSPA when P went into the home and they sent a professional information pack to the manager. She was delighted with the information and planned to share it with the staff so that they knew what to expect from P`s illness.
I can still remember being really cross in the early days when the SALT rang and was told by the duty nurse that P had no swallowing or choking problems ! I protested strongly and was told that `well, he hasn`t choked in front of me`. My comment was to ask if she had actually been present while P was having a meal - and no, she admitted she hadn`t. All that changed within a couple of days when P choked (as usual) during breakfast, the nurse had phoned the SALT and got a prescription for thickeners and a soft diet by the time I visited that day. Last week the SALT visited him and suggested that she discharge him from her list - the nurse at P`s home refused that and now he will be reviewed again in 6 months.
I feel that after 6 months (how time has flown) the staff are beginning to understand the complexities of PSP and although it is new to them they do ask me questions and seem very willing to learn. Also with time, relationships build up with you and the staff especially when you are there every day. If you become familiar with them and let them know M`s preferences it is better for her when you are not there.
Life is never perfect, all we can do is make it as comfortable as we can.
Thanks NanBabs, called PSPA for the package to be sent to the home, who were very happy to hear about extra info as they are finding the care a steep leaving curve for their staff.
Hi Tim. Thank you for your posts and insight ,they have really been helpful. F has been in hospital for over 3 months with rapid decline CBD. It took me weeks to get back to right sleep pattern but I still find that the stress and planning for F all the time is still tiring.
We have just been given full funding for nursing home. Good. I am building adapted bed and bath so F can come home. Spending retirement savings vs to do it. Now I have to reapply for CHC so F can get care at home. My biggest worry is they are going to say that funding will only be available if F stays in nursing home. The OT says it is a possibility. The home is 1/2 hour drive away.
I have found same response from nurses 're symptoms. I put together a one page list of what to expect and they were grateful.
You are lucky to be by the sea and I think you are marvellous getting out to Bodnant, that's not easy. I heard a comment today that is so true... live today well as you won't get it again.
Thanks Hellebore, sorry to hear your F in a home now, but at least the cost is covered. The return to home is a dream but I have to be honest with myself, I know that I could not cope for more than a couple of weeks. CHC funding should follow if he returns home but there would be an assessment which could be against continuing CHC as they probably think the care home is more safe and less work for the NHS staff. Just another fight for you to prepare for.
I have been told that if M was not able to cope in the care home after a couple of months!! they would help prepare the house again but it will take a couple of weeks to set up as she would not be classed as priority.
Bodnant trips only to the top gardens and top terrace wheelchair too heavy to take down the slopes, but still brilliant Spring gardens.
Hi Tim, with your expertise and guidance it won't be long before the home staff will understand M's needs. Enjoy many more trips out together and take care of yourself. Best wishes, Nanny857.
Great photo of the two of you! What a tough decision and one I am sure I will face at some point. You are absolutely right---it is the right thing to do for the both of you. Good luck and best wishes.
This might help a bit in terms of info for the staff/doctors. There is an info pack for care workers and doctors about psp and CBD that you can get fri the psp association.
There is an info pack about psp/ CBD for care workers/Drs that you can get from the psp association. I got one and asked the staff to read before adding to my mum's care file. Might be of some use.
Thanks bob40, I contacted PSPA yesterday and pack on its way, home very pleased to know there is some information as they are finding M a different patient than they thought.
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