Coping

[annais]

I am trying to put into words How I am coping, but more to the point how I am not coping. I know I sound pathetic!
My husband was officially diagnosed with AD over a year ago, although symptoms were apparent 7 years now. Treatment was commenced with Aricept May 2012. For the last three months we have had more bad days than good days. On these black days, he doesn't want to get out of bed, and literally will stay there all day. When he does get up, he will sleep in the chair. Encouragement on my part is just no good, and really it just wears me out, so I let him be and leave him to sleep, but is this right?
It is all so terribly sad, that such a gentle and intelligent man has deteriorated in this way. Physically he looks well, and portrays a fine figure of a man, and in fact doesn't look as if anything is wrong with him. On good days he is motivated, and will spend a few reasonably happy hours working in the garage. I praise him, and make a fuss of him, cook beautiful meals, and look after him, besides taking over all the duties of the house, finance, garden etc. At times I feel frustrated, and resentful which is an awful admission to make, and feel terribly guilty for doing so. I just find it so difficult trying to get my head around such an incomprehensible illness, where one is incapable of evaluating ones feelings. My husband to a certain degree is unaware he had a problem, and cannot understand why I won't let him drive. I wish so much I could discuss his difficulties with him, but this only makes matters worse.
I can manage the memory loss, the repetitive questioning, the fact black is white. Its the coming to terms with the severe Apathy, tiredness, the sleeping all day, that I have great difficulty coping with. Have you any suggestions, although I know in my heart that there is nothing really one can do, and I suppose learn to accept and leave him to sleep on these bad days. Anti-depressants have been prescribed in the past two years to no avail, and only make him sleepier than ever, and were stopped by our GP
I did in fact see my doctor about the possibility of some counselling for myself and was given a leaflet on 'I Talk' but as yet to contact them. One of your members I believe received help from the 'Princess Trust'. Its coping strategies that I feel I need in times of stress.
Thank you for listening
Annais

 

[Janey_B_]

You definitely don't sound pathetic! What you have said about your husband, sounds exactly the same as my Dad and its something I have been worrying about lately.
My Dad was diagnosed last August with early onset mixed dementia at the age of 59. I have been nagging him a lot lately about the amount of time he spends in bed or asleep in his chair and he says he feels safe in his own home and that if he tries to motivate himself to do things he gets frustrated and angry, which is I think why he doesn't bother? Before his diagnosis he still worked and was quite active, but now some days he is still in bed at lunchtime. Reading that you are in the same situation has made me realise that maybe this is part of his illness and not just his way of not having to come to terms with it, which was what I was starting to think.
My dad is also taking Aricept and depression tablets and as you said, to anyone looking at him you wouldn't know there was anything wrong with him. I feel sorry for my mum, who also puts up with constant repeated questions and his mood swings when he can't do something that he used to find easy. I seem to have become their personal secretary and have sorted out all their paperwork as that was something Dad used to do, but now can't and Mum worries about absolutely everything including talking to people on the phone, I hope you have someone to help you with all these things?
I have lots of friends who all say they are here for me and offer to help, but none of them understand how I'm feeling, that's why it's so helpful to find people on here who are going through exactly the same as my family.
I know I haven't offered you much advice, but I hope it helps you to know you are not alone!
Janey x

 

[Starvin]

You're not alone ! , I am 52 and have EMPHYSEMIA , vascular dementia and Alzheimer's .im sure my wife and children would agree with this , as they they also have to putt up with me ! I'm the same as your old man ,I'd rather not get up ever again cos its so much easier than trying to be normal , but we do get out of bed and its for you !

 

[Starvin]

It's also ok to feel cross and angry, I would !

 

[annied55]

Sleep Husbands

Good Morning Annais,
Your problem sounds pretty similar to mine. Phew we are not on our own !!! Due to my OH having a totally uncharacteristic out burst a few weeks ago, his consultant has decided to wean him off aricept and antidepressants with a view to maybe trying memantine. So far so good. After a week of half doses my lovely OH is more awake and alert and even chatty. It does not matter at all if he does not know me. I can see a bit of my OH from days gone by.Dont know how long he will be like this for but great to see. I let him have "down days" when he just wants to switch off. On good days we try and do things like walks, dementia groups, daycare.
Just take it day by day cos no 2 days are the same. Bit like Lucky Dip.!!! Have you been in touch with Age UK or Alzheimers Society to find out about any local activities.
This is one of the hardest things I have ever done and has taken ages to get my head round (if thats ever possible). Just want to keep OH safe, happyish and stress free xxxx

 

[Grannie G]

I think I`d be depressed and apathetic if I had a diagnosis of dementia and I`m full of admiration for those who are managing to be more positive.

 

[60's child]

Hi Annais
You mentioned guilt,frustration and feeling resentful. I dont think there is any carer who has not felt those emotions at some point. Dementia is hard for all concerned so you are most definatly not pathetic. Please dont be hard on yourself. You are doing your very best. I also think if I had dementia I would struggle to be motivated to do things. Maybe consider, as others have suggested some activites for your husband. My Mum has recently joined a day center and really enjoys it. I appreciate it is not everyones cup of tea though.
Please keep posting on here. It does help to "talk"

 

[MReader]

Sleeps for England

My husband has Vas Dem & Alz and sleeps for England - anything up to 20 hours a day but 15 is the norm.
I have tried & failed at motivating him -arguing, cajoling, bribing and calling the doctor out but nothing works.
I was told that as long as he is not dehydrated then just to let him be - it is his mental & physical way of dealing with his dementia. Also because only about half of his brain works, just living and trying to cope wears him out.
I find it very frustrating & lonely, especially on bright sunny days when I cannot go out in case he wakes up confused, not knowing where he is, as he then comes to find me & panics if he cant.
He now goes to day care twice a week - which is my god-send as I can at least go out knowing he is safe
Strangely enough he does not sleep while at day care but as soon as he comes in the door, he makes straight for his bed
It is a dreadful disease that takes away all normality for the sufferers as well as the carers

 

[karebu]

I am pleased that you are getting out of the house twice a week ... enjoy and look forward to these times. My husband sounds about the same stage ... he sleeps when relaxed during the day (often when watching a tv programme he enjoys!?!) As long as he is happy I try not to worry too much ... we don't get out too much as I have a back problem which makes it difficult for me to sit for longer than half an hour ... it's too difficult for me to spend hours trying to 'amuse' him and keep myself sane ... I found your blog reassuring (the bit about it's the brains way of coping). I would say that as long as he gets some stimulation during the day and is happy - please then try and do things that make YOU happy. Not an easy thing in this awful situation that we find ourselves! I do gardening ... but pop in and out of the house to keep an eye on mine - don't know yet what I'm going to do when he gets so bad that I actually CAN'T leave the house for a moment - I don't want to think that far ahead I suppose? Isn't it awful loving someone and watching this ... oh dear I'm sure I haven't put anything that will help you ... I'm thinking of you though and wishing you well

 

[karebu]

Annais ... you are doing a fantastic job. Please don't be so hard on yourself! My husband was diagnosed three years ago and is taking Arisept (I suppose it's doing him good but there is really no way of telling). My darling husband will come out with me sometimes though it's getting increasingly difficult to get him to do so and it's getting to the point where I am having to arrange for people to come in and look after him so I can get to my much loved art class. I would say that if he is sleeping let him do so ... the mind obviously needs a lot of sleep to cope when this disease strikes. Please, please don't feel guilty ... you are so obviously doing your best and your best sounds fantastic to me! I try and deal with it by thinking every morning ... that this day is a personal challenge and to do a little something in the day that I can feel pleased about for myself at the end of the day (not related to my husband I mean)... can be tidying a room, doing a bit of gardening, doing some painting (I paint a bit) reading 10 pages of a book ... it sounds to me like you will really benefit from getting some counselling (could you not call your local Alz assoc if your doctor is not helping?) Does your husband go out to any day centre? Would that help? We are here ... we are listening ... we are wishing you well ...

 

[jkt]

Hi Annise I know what its like my husband was diagnosed with vascular Dementia 4yrs ago when he was 62 he has changed so much and not the person he was, like your husband he his tired all the time memory is getting dreadful it is so depressing we should be enjoying our retirement now.He now goes in to respite while I have a much needed holiday but get very upset when leaving him and feel guilty, like you I spend a lot of time alone while he his sleeping and feel very lonely I try and get out as much as possible which I hope you do otherwise what else is there

 

[simpknt]

My partner never stops!

Oh, how I wish I had your problem, Annais! My partner, Janet (Dementia) is the complete opposite! She only sleeps for 3 or 4 hours a night and is wanting to go out the whole time she is awake. She was always this way, the urge to go out and explore, find new shops, discover new places. The difference now is that she gets lost and confused and I get the dreaded 'phone call from passers-by, shops and the police. Carers take her out 4 afternoons a week, and friends pitch in as well, but she has become aggressive and violent when out with them. Friends have started coming in pairs and the carers have warned that they will have to stop coming if this behaviour persists.

David

 

[Rageddy Anne]

Oh David, after reading all the posts about people seeking sleep as their way of coping, reading about your hyper active partner really rang a bell with me. My husband has been up a ladder all morning pruning something, and I've had to be in attendance throughout to 'advise'! It's past mid day and I've only just managed to have my shower and get dressed! If only he would sleep more. He's trying to keep his brain busy both night and day, checking and rechecking everything he can think of, locking doors, losing keys, constantly searching for tools, keys, and especially his wallet; and endlessly asking where people are and what are we doing next.

It's wonderful that he's trying so hard, and I wouldn't want him to take medication to calm him down as I'm afraid of him losing the last of his spirit...he can still be witty and funny and really good company. But, oh for a rest!

My main problem is that he is SO SURE he doesn't really have a problem, so there's no chance of him accepting anything that smacks of respite care.

My heart goes out to those carers whose Dementia sufferer just wants to lose themselves in sleep. It must feel like a prison sentence.

 

[LYN T]

Oh, how I wish I had your problem, Annais! My partner, Janet (Dementia) is the complete opposite! She only sleeps for 3 or 4 hours a night and is wanting to go out the whole time she is awake. She was always this way, the urge to go out and explore, find new shops, discover new places. The difference now is that she gets lost and confused and I get the dreaded 'phone call from passers-by, shops and the police. Carers take her out 4 afternoons a week, and friends pitch in as well, but she has become aggressive and violent when out with them. Friends have started coming in pairs and the carers have warned that they will have to stop coming if this behaviour persists.

David

Hi David

Believe me I know how you feel.My Husband is now in a CH but has been ill for 7 years. The last week that he was at home he slept for 8 hours in 5 days. (the last night not even one minute)

Nightmare! I always felt drained and physically sick when we had no sleep-I really couldn't function.I wasn't wanting eight hours but 5 would have been good.

As for the aggression-my husband was like that but only periodically.The severe agitation and threats was every day -but I walked away (unfortunately he always followed me)

Pete also tried to attack a carer at his day care centre and understandably they were worried about the other users.Actually ever since he started there he was the one who needed the most 'watching'.He really upset the applecart

So I understand your concern about services being withdrawn.

Take care

Lyn T

 

[Margaret938]

I have just been reading this thread started by annais, I can sypathise with all the posters since like Lyn, I have been through all of this. My darling husband is now in a CH, and I visit him every day, and spend quality time with him. I never had any trouble with George not sleeping at night, he was thankfully always a very good sleeper. It was during the day that he became very restless to be on the go, I used to get him bathed and laid out all his clothes, at that time he could dress himself, he was always ready to 'go out' before I could get dressed myself, and then he would get aggressive with me, I was never afraid of him, but our sons were afraid that he would hurt me, he is a strong man. He used to grab my wrists but never really hurt me. I know this was not my gentle loving husband but this beast of an illness was ruining both of our lives. Anyway, please remember that we at Talking Point are always here to help in any way we can. I have made so many nice friends since joining, Lyn is one of them.
Take care,
Love Margaret x

 

[Redpoppy]

So glad I decided to join this discussion.I've had a miserable last 3days as my husband who has vascular dementia and moderate heart failure seems to have deteriorated noticeably and suddenly.His memory is so much worse,he's not interested in reading or watching TV (I don't think he can concentrate for long).If I allowed it he would just sit 'relaxing!' or sleeping, waking to eat and drink.Within a short period of time he can't remember eating and is looking in the fridge for something else.It's hard not to get cross,but I manage to keep calm but it's so frustrating when he just doesn't believe me when I tell him he's not long had a meal. Oh well--let's see what tomorrow brings.Never know with this illness what's next. I will be thinking of you all.