Guilt, guilt, guilt

[MrsM]

I've just joined this group and would like to say hello.

My father hasn’t been diagnosed with Alzheimer’s itself, but he does have dementia caused by several mini strokes. We noticed that he was becoming forgetful and confused around his 80th birthday seven years ago. He also appeared not to easily understand what was said to him, something we initially put down to deafness ; it has since been diagnosed as dysphasia. The dementia also means that he has become increasingly immobile and in the last few months he has deteriorated to the point that he needs help with washing, dressing, eating and personal care.

My 85 year old mother has been Dad's carer all this time, but she herself is becoming frailer, and I am concerned for her health too. This week we as a family have made the decision to move Dad from the bungalow into a care home. However, it is very difficult to find somewhere suitable. My Dad may have dementia, but he is still aware of his situation much of the time. He went into a lovely nursing home for 1 week recently whilst Mum was having an operation, was terribly depressed thinking that he had been abandoned and that everyone had died, and was in tears at times. I am very worried about how he will react to being moved permanently into care, as I know he will be questioning why he is there and why he can’t come home. He simply doesn't understand that Mum can't cope with him now. Even trying to move him out of a chair to get to the bathroom is a problem. As an able bodied person, I myself have tremendous difficulty moving him, and the carers we have paid to help him in his own home over the past few weeks have been unable to cope either.

So there really is no other option, but for him to be wrenched out of his lovely bungalow, away from his wife, his garden, the cat and all that he might still recognise, to spend the rest of his days somewhere that he doesn’t want to be. Our only hope is that the dementia will soon develop to a point where he will not remember any of his past life. The price we have to pay for him settling into a new environment is that he will have to forget us, his family, which is very distressing. He is a very gentle man with impeccable manners, doesn’t wander and doesn’t cause any problems really, so if it were simply a question of the dementia, I think Mum could carry on looking after him. But the immobility is the real problem and we have been told that it simply won’t get any better.

To say we are feeling guilt about the decision we have to make would be an understatement.

[cragmaid]

Hello Mrs M and welcome to TP. The well worn adage on here is stick the Guilt monster in the cupboard. Guilt is a destructive emotion which gets in the way of progressive thought. And yes we also know how difficult that is to actually do.
Has your Dad had a care assessment from the social services yet, if not I would recommend that you contact the Adult Social care Department and ask for help, you could ask your Dad's GP to refer him if you prefer. Your Mum is also entitled to ask for a carers assessment too. This way it may be able to get extra help in the house even as a temporary measure. There are some here who manage to keep their relatives at home throughout their illness with various forms of home care. I would also suggest that you contact your local branch of Az Soc too. they will be able to give you further advice.
Don't give up hope, you know despite anything and everything you read about this disease, there is no single pathway this illness follows. It is certainly not a One Size Fits All!
Take care and keep in touch. Maureen.

[Sam Iam]

Mrs M,
Welcome to TP! You are amongst friends.
We are all haunted by the guilt monster from time to time with this horrible disease. None of this is anyones fault but this does not make these decisions any easier for you and your mum but alas it is what is best for your dad and your mum and I hope that soon you and your mum will be able to visit your dad and feel that for all of your sakes you have done the right thing. Hugs for your mum and you.

[rayanne]

Hi There,
i have just joimed too and was interested to read your post. My dad has just gone into a home after suffering a severe stroke which has caused severe dysphasia, he also has vascular dementia which has been accelerated by the stroke. As a result of this he does not make much sense when he speaks and does not understand what we are saying either ! He is completely mobile which has made the situation worse as he wanders around al the time and a few times tried to escape from the hospital, His cognitive skills have gone als0 and he does not always know what he is doing or does completely random things like brushing his hair with a tube of toothpaste !!! My mum is 86 and felt unable to look after him at home so he is now in a secure unit which he hates. He has a nice room and he can wander up and down the hallway but basically he is locked in. It is very distressing to see him cos he just says over and over how terrible it is and how he will die if we leave him there. we all feel terribly guilty but have no idea what the alternative is. He needs full supervision and mum is unable to cope with him. The staff there assure us that he is ok and that it is noramal for dementia patients to be like this and when we are not there he is content but it is hard to believe them when we only see him miserable. If anyne has any thoughts or ideas i would be very grateful to hear them !:

[MrsM]

Thank you all for your kind (and swift!) replies.

My Dad has already had care assessments and various pieces of equipment have been supplied, such as a commode, a zimmer, raisers for the chair legs, hand rails, and "Convene" to help him stay dry at night. These worked fairly well for a while but I honestly think it's gone beyond that. A wheelchair was suggested, but I don't think there would be enough space in their bungalow to use it.

About 6 weeks ago Mum started paying for a private care agency to send a lady in morning and night to assist with washing and dressing. This worked for a while, but some days Dad was very difficult to move and it was too much for one person. I suppose we could have two carers at a time and also pay someone to come in and check on them at lunchtime, but it still doesn't cover the rest of the day when Mum has to cope. A live-in carer is an option (expensive!), but there isn't a lot of room in the bungalow.

I am interested in what rayanne says about her father. It must be worse if the person is still mobile and wanders off, so there is no option but to lock them in. I think you probably have to trust the staff when they say he is OK most of the time. I do wonder whether having visitors is confusing and disruptive to dementia patients, although of course there's no way I could abandon my father to his fate - I would have to continue visiting, as I'm sure you would. Maybe just one visitor at a time would be the answer.

You are right about the guilt being destructive! The difficulty is that my family have to weigh up the needs of one parent against the other, and those needs are incompatible, as Mum and Dad have aged in very different ways. Whatever we do, there is bound to be guilt about one or other of them.

Anyway, thank you again for your helpful comments. x

[lonelyson]

Dears MrsM,
Great to hear, ''we as a family decided...'' You are in a caring, considerate family group and looking at what is best for you as a family. You aren't in an easy situation but you are together deciding what's best. That I hope will guide you through the emotional minefield you are going through. Thoughts are with you as you continue on along the road many of us see before us.

[Dazmum]

Dear MrsM, I do know how you feel as I was in the same position last year. My dad is in a nice nursing home quite close to us and we have no worries about his care, but every time we visit he complains about something, sometimes imaginary things. Other times he is very muddled. Sometimes he is very clear headed and has said to me he would like to leave it all behind . He is relatively mobile and walks with a frame, but has had a couple of falls. A lot of the people at the home are much worse and i worry that he has no one to talk to when he feels like it. My mum, who has mild dementia lives with us and we go and see him as much as we can, but I still feel bad that it has come to this, effectively splitting them up after 60 years of marriage.

What I tell myself, and everyone will also tell you, is that you have done your very best for them both, because imagine the strain on your mum trying to look after him and watch every move he makes if he was still at home. Where he is he will have 24 hour care, which you will not be able to give. Guilt just means that you really care, but you have done your best. x

[Winnie Kjaer]

Hello I am Win, I wanted to respond to your sad post because my husband like your dear father is a stroke survivor. He has now had 3 strokes and numerous TIA's and is totally paralysed on the whole of the left side.

I have cared for my husband at home for almost 8 years, 5 of which he has been like he is now. I understand only too well that your mother cannot cope caring by herself but I do not understand this statement

"the carers we have paid to help him in his own home over the past few weeks have been unable to cope either."

I am wondering whether this was a private arrangement you had or whether you used a domiciliary company.

Has social services assessed your father to suggest what help is needed and what can be done to help your mother care at home? Even if you are self funding this is a good idea as they can advice you better than anyone.

I have a care package with carers coming in 3 times a day to help me do personal care for my husband. I choose to do most of it myself, but we are eligible to have carers do it all i.e. two carers at the same time should I change my mind.

I have all the necessary equipment in place provided free of charge and not means-tested by OT. Hoist, commode, wheelchair and a hospital bed with an air-mattress.

What I am trying to say is that if your mother and the family as a whole do not think your dad is ready for a care home or do not wish him to go to a care home at all, there are ways and means to manage at home. As you mother will appreciate already it is by no means easy being a 24/7 carer and I know lots of people cannot do it, I just wanted to make you aware of all the options available.

My husband too suffers with VAD, Aphasia and Disphasia all stroke related which is very common indeed and can be very frustrating for the sufferer. Thankfully my husband is very laid back about that so it does not cause him any concern as far as I am aware.

I wish you all the best and hope you can all reach a decision which will make the family including your dear father feel better about everything.

[MrsM]

Hello, Win. Thank you for your kind words. I am full of admiration for people like you who are able to care for their loved ones under such demanding circumstances.

Just to respond to your queries, all the equipment my parents were given was provided free by Social Services, but the carers had to be paid for privately by my mother. As I mentioned before, Mum could pay for extra carers to come in during the day, but inbetweentimes it would be just be her having to cope with Dad on her own. Sadly my mother is not in the best of health herself, having suffered with arthritis for years. She has had several operations to replace various joints, most recently her hip. (At the time my father was also in hospital following a fall, which was really a blessing in disguise.) Mum's shoulder is now wearing out and she is on the waiting list to have this fixed. Recently she wrenched this same shoulder badly trying to lift my father from his chair, so is in a lot of pain and getting depressed. In addition her eyesight and hearing are beginning to fail.

So it's all too much for her to deal with really. My brother and I have been staying at the house a lot recently, offering physical and moral support, but it's a 2 hour drive for both of us and we both hold down jobs. There are also some very kind neighbours around, to whom we owe an enormous debt of thanks, but they can't be expected to bear the burden too often. So, after much thought concerning the needs of both parents, we have to accept that a care home for Dad is probably the best option and I have planned to visit some with my mother later this week.

With all good wishes,
Liz

[MrsM]

My parents have also been married for over 60 years, and it's like forcing them to get a divorce. I know my poor old Dad would like to remain with Mum til the end of his days, but sadly it's just not going to happen.

[QUOTE=Dazmum;482311] I still feel bad that it has come to this, effectively splitting them up after 60 years of marriage.