Hi, my mother was diagnosed with PD in 2020, although I think she had symptoms way before this. She had a fall in May and after 4 months in hospital, we have now got her into a perfectly nice care home. This was on the advice of the physios, who said that due to the fact my parents live in a flat, up two flights of stairs with no lift, coming back would be unsuitable. She also has 24 hour care needs, which my 83 year old dad was managing before her admission but only just.
He is desperate to get her home for Christmas for a few days and although it makes me slightly nervous, I think it might be something we have to do to see if it works or not. My question is, how would we get mum up the stairs?! She is almost completely immobile, and is mainly in bed at the home with an hour or so a day in a wheel chair for meals etc. does anyone have any experience of getting people up stairs in this context? Thanks in advance!
Hello HjFisher … I think the first thing I would do is have a word with the care home & get their opinion. Someone as old & frail as your Mum is clearly going to struggle where ever you take her. Another suggestion is that you think about a meal in a local restaurant as a family. These occasions are about a loving family being together rather than location, location. It might also be your Dad wanting this more than your Mum does. Him wanting things as they were. Sadly we can’t turn back time.
My Dad lived the last few years in a good care home & while he liked being taken out he always wanted to get back to the care home & be involved in what they had organised with the friends he had made there.
Maybe your Dad could spend more time at the care home with your Mum.
What ever you decide I hope your family has a wonderful Xmas.
Best wishes
Steve2
Hello HjFisher
Whilst I can understand your father wanting to have your mother back home for a few days over Christmas and I am inclined to agree with Steve2 it is probably your dad wanting things to be as they were that is the main driver. If you think about it he has lost his carer role; I am guessing a bit here but it may be that he no longer feels he has a role, a place in the family that means something, other people have taken over his wife’s care so where does that leave him. It’s not an uncommon response and takes time to adjust to the changed circumstances.
The bigger question that comes to mind when i read your post is when you wrote and I quote ‘I think it might be something we have to do to see if it works or not.’
Why do you think that? From your description your mother has very.complex needs and I suspect the decision for residential care was based on more than the fact your parents lived two floors up with no lift and you said yourself that your father was only just managing.
I think getting your mother up the stairs is the least of your problems, there would be ways that could be done but I am going to pay devil’s advocate here and say just because it can be done should it? Your mother was in hospital for four months and then went into residential care. Your father has probably forgotten (or chosen not to remember) how hard caring for his wife had become. For your mother she now has a new routine which seems to work for her and she may like the idea of going home but the reality might well be different. Her needs are unlikely to be managed so well at home and this could create a very stressful situation for them both. Throw into the mix that it will be Christmas when often all emotions are heightened and routines change and the expectation is that everyone will have a happy and jolly time because it’s Christmas. Even in families without your difficulties buckle under the pressure of trying to achieve that. So I ask again why do you ask if you should see if it works or not? I may be wrong after all I don’t know you and I can only use what you have chosen to write but I think in your heart of hearts you know this is unlikely to work and will probably just be stressful for the whole family.
In my personal opinion I think you need to help your father understand that he still has an important role in his wife’s life but a different one He no longer needs to responsible for her day to day needs just enjoy spending time with her. building some happy memories without the pressure of the caring role and maybe develop some interests of his own.
As for Christmas I think if your parents spent the day or part of the day together at the care home perhaps with other family members and join in the festivities the home has arranged they could enjoy a very happy day.
To quote Steve2 ‘sadly we can’t turn back time’ but that doesn’t have to be a negative. With a bit of thought, time and effort a new if different life can be built.
Tot
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Thanks for your response Steve2. I think you are 100% right when you say that my dad wants it more than my mum. But I now find myself in a very odd and difficult situation where both parents, who are now living seperatly after 55 years of marriage, want and need different things and I am trying to figure out how to ensure that both of them have their needs met without it impacting too badly on everything else! Thanks for your festive wishes, I hope you and your also get to enjoy some nice family time. Best wishes, Hannah
Hello HjFisher
I think you have hit the nail on the head in your last post. It may be hard to make the decision that residential care is the best option but what is often underestimated is the period of adjustment this requires - depending of course on individual circumstances. Arguably circumstances such as that your parents find themselves in, are amongst the most complex.
It is probable I think, that the hardest adjustment will be for your father. That’s not to say it is an easy adjustment for your mother, but she is not on her own in the way your father is - home alone in the flat as it were. Your mother has others around her, people to talk to and although may spend much of her time in bed will still see and hear things that are going on around her - hopefully the home make efforts to see she is included as much as possible. It should also be remembered that she is living with Parkinson’s and it might well be the case that she is relieved to no longer be (as she might see it) a burden on her husband. It can’t have been easy for her to see how difficult looking after her had become.
Although a massive change for your mother, the change for your father would be almost unimaginable. When someone loses the caring role that took so much of their time, they are often at a loss to know what to do. It was probably ok when his wife was in hospital with visiting her and so on and probably after a fashion got used to being on his own. I wonder however if in his heart of hearts he always believed his wife would be coming home and that was what kept him going. Now that hope is gone an he may well feel the loss very keenly.
For what its worth, I think you can only go slow and steady at a pace both can accept but for me the crucial thing would be that you are honest with them both. Your father in particular probably needs a lot of reassurance so that he can understand and accept he still has an important role in his wife’s care and an important place in their relationship and within the wider family. It may help if you can delegate some tasks to him so that he feels he has some responsibilities in managing his wife’s care and that he still has something to offer the family. If he can get involved with some activities outside the home, he will have something for himself, something new to talk to his wife about and I’m sure the family would like to see that happen.
There is one activity that is often quite successful during this period of change which may help because they can work on it together and that is to make some kind of a record of their life together - sorting out photos and remembering significant events and finding a way to record them. It can be done in any way they like - maybe a scrapbook, maybe just a photo album. If your father hse some computer skills maybe he could write up a significant event. These days turning such memories into a series of photobooks - maybe a book for each significant event eg how they met, their courtship and marriage could be one book, birth of children and grandchildren another and so on. It is not a quick project but it can produce the most amazing results if they take to it. They may need some help to get it started and organised but if could also give your father something useful to do at home - sorting out photos to take into his wife or maybe writing up a story to take in to show her etc.
I am sure you will find a way through this period of adjustment. You obviously care about them both and at the end of the day that will guide you as to the best way forward. It may take a bit of time, it may be a bit slow but they will be alright - and so will you.
Tot
Tot, thank you so much for both your replies - you make some really good points in both. Getting mum home for Christmas is so much more about my dad than it is about my mum. I think in the end, the cost of it all will be the deciding factor, which is how I’ll frame it to my dad because this is the other thing that is sending him into a tailspin, each week at the home is costing £1900. I think this in itself is actually making him ill. Not sure if theres any way round that, I have applied for CHC, but think we’ll only FNC, which means that other benefits will be affected.
Anyway, that’s beside the by, I have suggested that he take more photos in and they sort them out together, he has so far resisted doing things that make her room at the home like her home and I have been gently suggesting it for weeks now. Have appreciated this forum in the last week or so, so thank you all.
Hello again, cost is certainly a significant factor in the care home scenario because it is very expensive even if only basic care is needed. It might be worth your making a call to the helpline just to make sure you are not missing something that may help. They are very knowledgeable and have a lot of resources available and if nothing else, it will be a reassurance to you that all you are doing is on the right lines.
Re your father it sounds to me like you are doing things entirely right by him - going at his pace is crucial and effectively doing what I call drip feed ie you’ve planted the seed then take every opportunity that presents itself to make a comment, suggestion or whatever is appropriate. Nothing heavy more like a passing remark. It can be slow going but generally brings results that takes the person with you in a positive way without making them feel they are being pushed into a corner and that they don’t have a voice.
For now though, I hope you can get Christmas sorted one way or another so that you can all have a relaxed and enjoyable time.
Tor
Sadly, it sounds like a nonstarter going to the flat. Even if you hire in some helpers to carry her up the stairs, there will be the midnight 3 am, 6 am loo visits as a minimum, and things like showering and washing which it sounds very difficult for your dad to do, how about something like an accessible Airbnb which you can set up in a slightly more homelike environment just for the Christmas break, and hiring some carers for the nighttime stuff?