When the head goes- managing life with a close one with a memory disease.

This is a difficult subject, but as many dear people in this kind forum have a long experience of life, I wanted to bring this up in hope of experiences and advise.

My Father's wife has rapidly worsening condition but refuses to see a doctor, meaning that my dad is now looking after her full time. Nowadays she only flashes fleeting glimpses of her previously happy, humorous and warm personality and is mostly confused. She no longer recognises people outside of the immediate family circle.

Their life is closing in, no more daily walks in the nearby woods, no visits to art exhibitions or concerts they just some years ago enjoyed so much.

There is an awful lot of pride and sadness from our dad's side, forcing her wife to see a doctor or even to admit they need support is out of the question.

We siblings talk about the situation and our brother (whose mother she is) carries the burden of managing practical things and simultaneously looking after his young family.

Specifically today we talked about Christmas. Dad won't probably doesn't want to have anyone around as it would confuse and stress his wife, and they are not keen to visit anyone either, even shortly.

Christmas is such an important light in the middle of the long winter, there's always something to plan, to cook, decorate, hang up lights, get a tree.... if they will not feel up to anything it will be a very long, dark winter indeed.

We all know that when something eventually happens, she or both will be directed to care.

It's awfully difficult. I'd appreciate very much hearing your stories of how things went for you and what helped, and what reactions the loved ones had.

Thanks

 

Oh dear @Selleri, I am so sorry to read that.

I have seen two very good friends lose their parents this way. One to vascular dementia and one to Alzheimer’s disease. Neither friend was able to help her parent in anything more than the most basic ways. Vascular dementia seemed to me to be by far the worse condition because the parent became aggressive. The Alzheimer’s parent was just happy to see my friend but had no idea that she was her daughter.

I take it that your father and his wife live in Finland. I don’t suppose that there are many similarities in what is on offer from health support services. I feel sorry for your brother who has so many things to take care of.

I am the last person to help you with this, but could Zoom meetings or something similar be of any help?

 

I've known of two people in my street in something similar regarding the situation.
In both cases the husband who was not the one affected ended up becoming cut off and never going out.
Its often worse for those that are dealing with it rather than those that are affected, bad as that may sound.

I dont know any answers but I think seeing doctors and getting support is the only way to go and best for all concerned.

 

The most useful thing I've learnt about supporting someone with dementia, I think it was originally from Oliver James's book, is not to contradict the misremembering, and to be relaxed about the ways in which the constructed memory of the family member is different to my, or anyone else's, constructed memory.

We use an iPad which automatically answers the call, to keep in touch with my Mum, who has vascular dementia. When we call, she doesn't remember who we are, but once we've managed to direct her to the iPad, she appreciates the contact.

We find regular zoom meetings between siblings for updates, mutual support and sharing the admin and practical work, really helps.
Supporting independent living by getting some care into the home as soon as possible can be crucial, I think - getting help in before it is needed can prevent the upheaval of moving into residential care.
Your Father will need breaks from caring, for his own wellbeing, so regular respite care going into their home will enable him to care for her for longer.
The conversations about additional care can be delicate - it can be good to start then as soon as possible, and try things out on a limited basis to begin, then checking in on how well it's working.

 

Even if she won't go your father needs to see a doctor to establish what support is available for him - respite care, activities for dementia patients and their carers, help with shopping, exercises for her and ways to manage her condition.

I believe that playing music from their youth helps a lot of patients with dementia as it can put them in a happier place where they can still retrieve memories.

 

Sad to read this @Selleri.

I know this is a hard thing to hear but seeking help cannot be out of the question. There may actually be therapies or medications to help, so this may be an a way of persuading your father to make an appointment.

I understand first hand that people don’t want to admit or seek help or admit things are difficult. A practical step could be arranging a private ‘home help’ which could be put in place for benign reasons to start with (help with cleaning etc). I have found that with time this can be extended and eventually the help can be more for personal care etc.

Thinking of you, and anyone else going through similar difficulties.

 

One of my friends got help from this company, which I see is an international one. Maybe some professional person could pop in to do the dishes, do the shopping etc?

https://www.homecare.co.uk/groups/profile.cfm/id/65432196457

As we get older, or just less fit, we call in the help of gardeners, window cleaners etc. There is no shame in getting your lawn cut by someone with stronger arms and legs. Why should there be any shame in looking for help when your memory goes?

 

I used to be a social worker for disabled and elderly people, and I can't tell you the number of times a carer died first, leaving the disabled or elderly relation alone. They struggled without help until they were worn out. It's important to get the help for your father, he counts too.

Personal experience :-
You have to be ruthless. It sounds nasty but you have to be.
My mother came to stay here after dad died and she had a stroke, which affected her memory. She got increasingly worse an in the end, after three years, I had to get help. She didn't want it but I told her she had to have it and that was that. When the help arrived she accepted it.

It was the same when Beryl became so disabled that I could hardly leave the room, and in the end I had to get someone to sit with her for an hour or two, while I went out for a break, just to the nearest town and back, or for a walk. It sounds as if I wasn't willing to look after her but things became so difficult that I was cracking up.
I told her this and got the help anyway, even though she moaned about it. I had to look after my own health as well as hers.
She died a few weeks after the help started ...

 

I was so sorry to hear about your parents @Selleri .

My darling Mum had Vascular dementia and was cared for by my Dad up to the end, with help from carers 4 times a day, so I have some idea of what your family is going through.

At this time of year with Christmas looming on the horizon, it tends to bring back memories of times past for other family members, but I can understand your father wanting to keep things the same as any other day and avoid any change whatsoever to their routine.

I wonder if it might be worth your brother talking to his father and gently telling him of the strain this is placing on his own young family, as well as the rest of you.

I realise that a lot depends on your father's personality as to how he would react to this and maybe that it takes a while for him to admit that they do need help.
@Tidemark 's point that (generally) most people require help with physical tasks so why should this be any different is a good one, and again might be worth making.

Sometimes there comes a point when the child becomes the parent and has to just take charge, no matter how upsetting this may be for all concerned. For your parents' sake it looks as though the time has come.

Thinking of you all, if there's anything I might be able to help you with, please ask x

Edited to add that I have just read @ Michael Hewett's post above. My Dad was the same, there were times when, as much as he adored my Mum, he just had to get out of the house and have a break. The strain on carers should not be underestimated.

 

I understand also, from my own experience and from dealing with people when I was in social work, that there is a tremendous amount of guilt attached to getting help, and even admitting you need it.
I felt as though I was abandoning my mother and Beryl, and I felt I was a bad person, but you have to think logically, and although it is difficult to do that in such situations, you have to think of your own health, and by getting help you will be able to carry on caring for your relation, when if you didn't the situation would break down completely ... and then both carer and cared-for would suffer , as well as extended family too.

 

We have gone through this with a grandparent from both sides of the family. My nanny looked after my granddad and wouldn't except any help. She believed it was her duty and even hid a massive (I'm talking couple of pounds) skin cancer from us because she believed he would die if she went into hospital to be treated. We did the garden, some shopping and the odd bit of washing but she did everything else and point blank refused outside help. In reality she did an unbelievably good job of caring for him but at the cost of her own life.

Another family member is going through a similar thing with parkinsons and his wife is realistic and excepts any help that is offered. He goes into respite care for little holidays and has daily carers which allows her a little normality and a holiday of her own.

A friend also just lost his mother to the same thing and he thankfully excepted help. It was a little forced on him but he was great full. I think it's a very hard conversation to start but one that is essential to have. As horrible as it sounds, once the person is gone there has been a sense of relief, followed by guilt for having that feeling, that they are no longer suffering.

 

I really sympathise with your situation @Selleri. I'm not sure I can give any advice but just want you to know I've been there and know the sorts of issues you're dealing with.

My dad was eventually diagnosed with Alzheimers after my step-mum had battled on for ages with his bizarre and unpredictable behaviour, and latterly some violent outbursts. Whilst in hospital (after being admitted with back problems) he had a stroke on the ward (which we diagnosed because nobody else was paying attention!) and then ended up with vascular dementia as well. It became obvious that my step-mum couldn't cope with him at home, even with me visiting, so we reluctantly looked around for care-home vacancies when he was discharged. But the choice was very limited. My dad passed away in 2018 after spending his last year in the place we found, which I have to say was pretty bad and for which I still feel desperately guilty.

My step-mum is now also in a care-home having been diagnosed with dementia. She has returned to Stoke where her real sons live but we visit her every few weeks. We thought this home was lovely when we first visited but it doesn't take long before you start to see all the cracks & shortcuts. All I would say is (and I know it's not always practical or even your sole decision) is put off the care home option for as long as possible. If home-help is an option, explore that first.

I'm assuming 'Powers of Attorney' have been put in place. We're so glad we got that sorted well in advance of the need to use them.

My thought are with you and your family @Selleri. It's never easy coping with the reality as @AnniD says of you the child effectively becoming the parent.

 

Anyone who has to go through this horrific situation inevitably ends up in a bucket load of emotions. A huge bucketful.

It is made far more difficult when the people suffering the illness refuse point blank to accept help or even entertain the notion of discussing such a thing. The instinct for self preservation and independence kicks in in a huge way.

Those in the caring capacity have their hands tied. What to do? Do what you can until you can’t. And then another bucket load of emotions comes along when new decisions are made.

It is all a very hard path to have to take. I’ve done it with my parents. And the guilt lingers but everything must be done to keep folks safe, cared for and looked after properly. When we can’t do that we have to cut the chord and let others do it.

 

Thank you all for sharing your stories and experiences!

It's so very sad to read about these situations, but also helpful.

I think it is wise advise to focus on our Dad's wellbeing. He is a sensible, intelligent person and might be open to consider the situation from that perspective even though accepting help and admitting the situation is hard.

They did hire a lady to clean their tall windows last year, and he still moans about it It's not easy to let a stranger do things differently.

I think Dad might also be afraid that a care home is suggested. We'll have to continue to explore what other support is available as I agree that separating them, or moving both from their own home would be devastating for them and probably also very confusing for his wife.

Thanks again very much all.

 

Care homes are the very last resort in my opinion. I was working with the social services and saw many of them, private and council run ones. The best ones were not fit for purpose, and as for the others, well they were absolutely inadequate.
We looked after my parents and B's mother until they died, but we did get help when we needed it, and that's why we were able to carry on.
I wish you all the best and hope you come to a satisfactory conclusion which will benefit everyone