Husband in care.....how do I cope

[Maryanne]

getting thru and holding on

These are the things that helped me. You MUST take care of yourself, nutrition, health and exercise, it you are to cope you need to be well. I fell into a huge hole put on weight stopped exercising etc - I wallowed in my own self pity because it was so hard to witness. Take time out to do something for yourself everyday - a walk, read whatever interests you do it, you must have a 'happy' place to go - even if its only for a few minutes.

I try to help the care home with my dad and mum whenever possilbe, I go for meal times and take dad a treat, I feed him and mum, sit and watch tv, read, whatever really, and at times I have taken great comfort from the fact that I am 'repaying' them just a little for all the love we shared for so many years. I try and take 'joy' from tending their needs. But then I go home and go for a swim or walk my dog and reming myself this is only a fraction of their lives. It is not who they really are.

This is the hardest thing I have ever gone thru, and still go thru, take care of you, cry when you must, rage even, but focus on just being their and those days that it is just unbearable do something else that helps you then come back. You can get thru its just finding the methods that suit you.
Maryanne
xx

 

[earth angel]

support

My husband was finally diagnosed with Alzheimers 4 yrs ago aged 55. I knew something was wrong way before this but getting any help from medics was almost impossible.

I cared for him at home from early 2007 until Sept 2010. It has not been an easy journey as most of you will know. At the beginning I thought I was clear about what I would and would not do for him. It's amazing how the goal posts keep moving. I said I'd never cope without sleep, I survived 12 months of his waking nights before help arrived. I said the day he hits me he's gone, he did and he stayed. I said I'd never cope with incontinence, it happened, he stayed.

My family have been supportive throughout. One of my daughters moved in with us and helped me in her dad's care as much as she could. It has been such an emotional roller coaster and at desperate times I have wanted to kill him, myself or both of us.

Over time my husband has gone from a self made business man to a man who can no longer do anything for himself but walk. He has no memory of his former life whatsoever. He doesn't know I'm his wife or that we share three children. He cannot wash, dress or feed himself. His speech is almost non existent except for swear words!

Before I finally agreed to care he was almost a prisoner in our home. He could no longer go out as he would run away. He would jump out of cars at traffic lights and just run, no concept of the danger of other cars. The carers we had were finding it increasingly hard to stay in with him. His aggression and violence was reaching an all time high and I was fast approaching the end of my tether.

The week before he went into care, I took him with me to the local shop for a couple of necessities and intended to lock him in the car, child lock on whist I ran inside. (cruel or kind???). Anyway he insisted on coming in with me, my mind wandered nd before I new it he was gone. Outcome was, he missing for 8 hrs on a dark wet and windy night. He had no coat and summer sandals on. Boy did we go through hell. Bless friends and neighbours who joined the search with the police. He was found as the police helicopter was about to launch.....Soaked soiled and starving.

That was a Friday evening, Monday morning his psychiatrist was on the phone saying he had a place in a specialist unit for dementia sufferers with challenging behaviour, he moved in on the Friday, exactly one week from me losing him.

Sorry for such a long introduction, let me get to the point (if anyone has stayed with me this long)......Since he has gone I have found it hard so to cope. His illness is more real somehow. New emotions, feelings of despair, emptiness and nothingness. I can't be bothered with life, I'm a mess, my home is a mess. I am trying to cope with a bereavement even though he is still alive. A living bereavement is such a true phrase. Is anybody out there living this now or felt like this and survived, please help if you can.

Regards Bastan xxx

hello, i feel somuch for you its heart breaking i do understand how you feel, i work in a dementia care home and my nan also had it, thats the reason i decided to work in this type of care, its so hard to try to help from here but ill try, you are going through a bereavement although your husband is still alive you feel you have lost him, there is a book called contented dementia and other books that are very interesting to learn to view how it is for the person with dementia and thier families, and maybe a support group near you ,where other people also are going through the same situation you are, no one can understand unless they have been through it, im sure you have done everything in your heart and hands to help him, and it will take time for you to healand accept this, im sure youre a fantastic caring wife and he will know this in his heart, although they cannot always express they still sense and know your good intentions and love and care, soplease dont torture yourself things will get better it all takes time i wish you all the best

 

[Cooke179]

Hope you are coping well - it takes time

HI my dad was sectioned two months ago. I dont come on here very often but find it comforting to know you are all here.
My only comment is that it takes time to come to terms with.

My mum looks so much better as is calmer without my dad. She still turns over in the night and worries where he is before remembering.
I am happy to know that they are both safe. Dad is well look after. When we go to see him he can be scruffy but sometimes it is just a case that he has gone in the dirty washing bin and selected his favourite clothes (dirty) out of there.
It is not easy to get him to change out of dirty clothes, it is can almost be like a two year old tantrum.

Please take time for your self and it will get better. x

 

[Bonesy]

With you

Hi

My husband Michael was in a care home for 9 months before he died in 2009. I have a very good idea about what you and your family are going through. Michael was 60 when he died with 'early-on-set' Oh boy, what a rollercoaster you are on at the moment. Please believe me you will get through alll of this, I did, much to my own amazement ! I know how hard it is I had a house very similar to what you describe, I did'nt wash, I could not eat, and when I did it was instant rubish, I think most of my food intake was crisps or nuts.
My advise it to just go with it as long as you can, talk to friends and famiy, it is awsome how much most people will listen, because there is nothing else anyone can do but listen. Unload on everyone you can, tell them everthing you feel and tell them over and over again, they will listen and never tell you enough is enough, because if you talk from now until doomsday you will still want to say more.
I live in Rossendale Valley, near Manchester, I know that the services are useless, I know they will try to bleed you dry and get you down, DON'T LET THEM!
The state of mind you are in at the moment is so mixed up, I be you do not even know which way is up. Don't worry it is how I felt and here I am now 18 months down the line, I'm not saying its easy, but it can be managed.
I feel for you so much, but please DON'T STOP TALKING!

 

[waterfall]

Hi,
My Husband went into full-time care November 2011. He was diagnosed with PCA Alzheimers in 2005 and I looked after him for 5+ years 24/7 on my own. He woulnot except his illness and therefor having help in was a nightmare. It wasnot until I was on my knees that he finally went into respite which continued onto be full-time care, this prevented him from being sectioned. The home that he is in is brilliant although it is in another town 30 minutes drive away but it is worth it. My Husband was 52 when he was diagnosed and it has devastated our lives. I am struggling to come to terms with him being in care and it has effected my health quite badly. But I can go and feed him,dress him, shower him every day if I want to. I go out with the Activities Team, which gives us quality time to remember. At the moment I have job seekers on my back, but I donot feel I can hold down a job just yet and am waiting to see a cognative therapy specialist to help me be strong again to carry on. My G.P. has been amazing and supported us both immensly. All I can say to you is that I know how you feel. It is a living berevement and I have not experienced feelings like it. Take each day as it comes, take time for yourself, rest and eat well for now. Try to be strong, it is so hard, and the feelings of loss are enourmous. I will think of you xxx

 

[glenlynn]

Bastan

Hi Bastan Yes it is hard My husband went into care last year in May and has only just settled down now he has deteriated in that time he too is leaning to his right with no explanation I also have prayed that he die's with dignity but he still reconize me and asked for me if I don't go for a copuple of days and there are days when he is so lucid that I think he is coming back when he was at home I didn't know who I was I felt I coudn't be his wife as I now was his carer but now he is in care I am his wife again like you too I try to do normal things and always think if only but I feel that we are sent thing's that god knows we can deal with my husband was having a afew kisses and cuddles with one of the female residents and it broke my heart he was aware what he was doing and said he didn't want me to leave him although I didn't know how to handle this I battled on and still visited him although I felt sick each time I went there bbut he has now stopped this little relasionship but no one understood how i felt I expected many things b ut not this however while he still remebers who I am i will keep loving him and supporting him but the day he dosen't know me will break my heart again taske each day as it comes be happy for the good days and forget the bad take care of yopur self Glen Lynn

 

[Loopiloo]

Sorry for such a long introduction, let me get to the point (if anyone has stayed with me this long)......Since he has gone I have found it hard so to cope. His illness is more real somehow. New emotions, feelings of despair, emptiness and nothingness. I can't be bothered with life, I'm a mess, my home is a mess. I am trying to cope with a bereavement even though he is still alive. A living bereavement is such a true phrase. Is anybody out there living this now or felt like this and survived, please help if you can.

I can't say anything helpful, Bastan,as I am in the same place but can empathise with how you feel, all you write.

It is three and a half months since my husband went into hospital, now in his third, and on Tuesday I start looking at the first care home on a short list. Still cannot believe this is happening, that my husband will never again be here in his owm home.

Our home which is crying out for the attention I could not give it before my husband went into hospital, nor since.

But if it is any consolation, I am a little bit less of a mess than I was. Mainly because so much is happening and has to be done, re going into care, I have to keep it together, not fall apart in front of others.

Glen Lynn wrote:

however while he still remebers who I am i will keep loving him and supporting him but the day he dosen't know me will break my heart again taske each day as it comes be happy for the good days and forget the bad take care of your self Glen Lynn

That is all you can do, isn't it, take each day as it comes, be happy for the good days, try to forget the bad ones. I'm hoping for a good one today, the last visit was bad.

Thinking of you both, and all the others in this situation.

Love
Loo xx

 

[zeh]

Hi Bastan,
Like you I have taken great consolation from this site to see so many people in the same boat. It is a year today that my husband had to go into care, and one of the ways I have coped with it is insisting on being involved in how he is looked after. There is a limit to this as I have teenage children who need me as well, but I have learned a lot about pressure cushions, chairs, feeding, appropriate clothes, activities, washing routines, medication etc. My experience on visiting is that it sometimes upsets me hugely, but that not visiting is worse! I have tried to get to know the carers and nurses (easier with some than others) and to get them involved in discussions as to which clothes work best, whether and what he is eating, insisting that he is not left in the same chair for five hours at a time and other, sometimes very simple issues like making sure he has his favourite marmalade for breakfast.

This experience is unique for everyone (which is why I don't like the 'one size fits all' approach of the book Contented Dementia) and don't be afraid to challenge the method of care or any of the routines if you feel it's not right for him. Certainly for me this has helped me feel that I am doing what I can for his quality of life. I'm also aware that the time we do spend together has a better chance of being less stressed and therefore more pleasureable than when he was at home.

Good luck and take care of yoursself.
Zoe

 

[remember]

hi

I really feel for you. My Father has alzheimers and my mum cares for him 24/7. He can be agressive, we have lost him on numerous occassions so can relate to what you are saying. I dread the time when permanent care becomes a reality. Wishing you well. Its a hard journey.

 

[julie39]

My husband was finally diagnosed with Alzheimers 4 yrs ago aged 55. I knew something was wrong way before this but getting any help from medics was almost impossible.

I cared for him at home from early 2007 until Sept 2010. It has not been an easy journey as most of you will know. At the beginning I thought I was clear about what I would and would not do for him. It's amazing how the goal posts keep moving. I said I'd never cope without sleep, I survived 12 months of his waking nights before help arrived. I said the day he hits me he's gone, he did and he stayed. I said I'd never cope with incontinence, it happened, he stayed.

My family have been supportive throughout. One of my daughters moved in with us and helped me in her dad's care as much as she could. It has been such an emotional roller coaster and at desperate times I have wanted to kill him, myself or both of us.

Over time my husband has gone from a self made business man to a man who can no longer do anything for himself but walk. He has no memory of his former life whatsoever. He doesn't know I'm his wife or that we share three children. He cannot wash, dress or feed himself. His speech is almost non existent except for swear words!

Before I finally agreed to care he was almost a prisoner in our home. He could no longer go out as he would run away. He would jump out of cars at traffic lights and just run, no concept of the danger of other cars. The carers we had were finding it increasingly hard to stay in with him. His aggression and violence was reaching an all time high and I was fast approaching the end of my tether.

The week before he went into care, I took him with me to the local shop for a couple of necessities and intended to lock him in the car, child lock on whist I ran inside. (cruel or kind???). Anyway he insisted on coming in with me, my mind wandered nd before I new it he was gone. Outcome was, he missing for 8 hrs on a dark wet and windy night. He had no coat and summer sandals on. Boy did we go through hell. Bless friends and neighbours who joined the search with the police. He was found as the police helicopter was about to launch.....Soaked soiled and starving.

That was a Friday evening, Monday morning his psychiatrist was on the phone saying he had a place in a specialist unit for dementia sufferers with challenging behaviour, he moved in on the Friday, exactly one week from me losing him.

Sorry for such a long introduction, let me get to the point (if anyone has stayed with me this long)......Since he has gone I have found it hard so to cope. His illness is more real somehow. New emotions, feelings of despair, emptiness and nothingness. I can't be bothered with life, I'm a mess, my home is a mess. I am trying to cope with a bereavement even though he is still alive. A living bereavement is such a true phrase. Is anybody out there living this now or felt like this and survived, please help if you can.

Regards Bastan xxx

Dear Bastan

Your letter moved me to tears ... I am so sorry ...... My husband was diagnosed in year 2000... after eight years of increasing awfulness , change of character, agression, escaping double in continence etc etc... eventually the matter was taken out of my hands and we found a "nice caring "
secure residential home ..... that was when it got even worse for me .. I cried all the time .. hated leaving him there and saying goodbye , as soon as I left I wanted to go back . I resented other couples who were still together and "healthy ". I hated the remarks of so called "friends" who made remarks such as "You must be so pleased he is being so well looked after ".. I felt I didn`t recognise myself any more . He seemed content in the Home sitting all day long at the Dining Room table humming tunelessly.. he seemed happier with the other residents than myself . Sometimes I would leave the Home and wonder which was the real world .. in there or out here ? Everything I had always thought important I was now questioning ... and everything I had always valued seemed to be colourless and unimportant.

After two years my husband became more ill and was unable to stand or move very much .. the staff were wonderful and got him up each day, dressed him nicely and sat him in a chair in the Lounge . I went in every day and sat with him reading to him or telling him things or sewing . during this time a change came over me and I realised I had to release him into the world he had long ago entered , a world where I could not follow him.. I stopped pretending that all was as it had been before and released him into this place where marriage and family were no more and I also had to learn that there was no place in me for bitterness and guilt . I was hanging on to him and all that had been before and in this act of release I found a wonderful sense of peace and loved just being with him not speaking but just being . Barely two months later he died peacefullly but I was able to give thanks for these last weeks we had spent together .. Take heart Bastan ..... Keep holding on ... Julie

 

[Bastan]

A Massive Thank You

I am blown away by the support and strength of character I am encountering on here. At the same time saddened to find so many suffering and trying to cope with the fallout of this vile disease. I have been moved to tears by the wretchedness of your stories yet my heart sings at the hope of recovery and a better life to come. Thank you to each and everyone of you for sharing with me.

I do think a lot of these replies should be posts in their own right so they can reach so many more people.

love and hugs to all
Bastan xx

 

[LMN]

Seperate Posts

Hello Bastan,
I do agree with you, that some of these posts could be made into new threads, but that, I guess, is up to the good people who care and run this site.
I mailed you a few days ago. I still have to come through the tunnel and face each day as a 'normal' person.
As I am new to the area, where I have moved to be nearer to Michael,and our family are far away, I am very lonely. Visiting each day, keeps me busy, and walking the dog helps. Anyhow, last Saturday, having met a Brit when walking our dogs, I was invited to a buffet lunch. I told myself I had to go, to meet new people etc. The night before I got out my smarter clothes, not worn for a long while; when the time came, I could not stop myself. The clothes went back into the cupboard, and on went the usual gear, and I visited my husband.
One day?????
Laura

 

[Bastan]

Oh Laura what a shame, that is so sad. Why do you think this happened, what stopped you. I have a friend whose mantra is 'I'm glad I made the effort' she aims to say this at least once a day. I try it often, sometimes for me it is just getting dressed. Other times I take up an invitation and force my self out of 'my prison' and 4 out of 5 times I am glad. Many times I fail but I forgive myself instantly.

There is a world outside of dementia and sometimes we must remember and join it (for the good it can do us). I so hope you get the opportunity to go again and you will do it for this Lady in England who is wishing you well.

love nd hugs
Bastan xxx

 

[Grannie G]

Hello Laura and Bastan.

As someone who is a few steps ahead of you I can really recommend trying to get some of your lives back .

I visit my husband three times a week and our son visits on Sundays. The rest of the time I try to do something for me so when the worst comes to the worst I will have some kind of a life.

It works both ways. People are telling me about things my husband has talked about with them when I am not there. He talks to care staff and residents about his past life.
It really cheered me to hear he was socializing, albeit in his own sweet muddled way. I don`t think he would do that so well if I was with him most of the time, he would remain dependent on me.

I joined a Senior Citizen Forum and volunteered to serve on the management committee. I confess it wasn`t as altruistic as it sounds. It was with the intention of meeting like minded others.
The outcome is I have made new friends and one asked me to share a short holiday with her. We go in June and I have something to look forwards to.

Please try, both of you.

 

[shellyd]

Dad

Hello Bastan,

It's the first time i have replied to any of these posts and my heart goes out to you. I too am in same position Dad has just gone into a care home after caring for him, he lived with me for 18 months and every weekend before that. He was officially diagnosed 2 years ago this month. It wasn't obvious to the so called professionals as mum was diagnosed with cancer in 2007 and I cared for her with my sister for the year she had after diagnosis. Everyone kept saying dad was greiving but i knew different. He supervised the lift's being built in Canary Wharf and was a london cabbie and then he could't get the sky remote!!! so insignificant to them but I too have the same feeings I havent had time to greive for mum and now my dad - except he is physically here. I became tuned to listening for him each night as you do a restless infant, it became second nature to think for him to know when he couldnt find the words what he wanted, to become accustomed to seeing his personal needs were met! Now he is no longer here at my house I am trying to deal with the utter devastation i feel at putting him into care. My daughters 17 and 15 suffered and i now realise that everything came second to dad, hard for them to accept and now i feel lost and deprived as he knows nothing of our life as a family of his life with mum he was 68 this month. My house too is a mess and every night i feel so guilty i still cant sleep. It may to be early to say but each day give yourself time to greive and remember you did everything you could and that comes with a price.

Things do get easier to live with - there is more to life than housework, the dust will still be there tomorrow! I now enjoy doing one small thing for myself each day or I try and you will look back and see each week you get a small part of yourself back, dementia is a living bereavement for us carers and its lonely but as you see someone somewhere may not be able to hug you physically but we all feel your pain. There is a saying that I try and take comfort from "cry because i am gone but smile becuase I was once here" xx my heart goes out to you and your family xx Shellyd

 

[alison mahoney]

its 1 15 am I read your message and cried my husband went into respite care 3 days ago and I had the same resolve as you but I now feel broken and cannot come to terms with all thats going on around me I promised him ( some months ago before he became so bad) that I would never leave him or send him away but as I was so tired and ill it was taken out of my hands ( he had become pretty aggresive and I was the brunt of his anger) this was the man I married 47 yars ago a kind and loving man who did everything for me and his 3 children he loved his grandchildren and now hardley recognises them. Like you Ime a mess my house is a mess and my brain goes round and round have I done the right thing am I strong enough to go on when he comes home ? reading your message made me feel better as I was not alone with this heartrending situation,
God Bless

 

[Bastan]

Hello Allison

I am so sorry you are suffering so much. It is so very hard to let go of our loved ones, sometimes there is just no other choice. Forget any promises you made and forgive yourself for making them. I must be totally honest with you, as hard as it is Nats being in care, there is just no way I could go back to the intensity of caring 24x7. I am still in bits and everything I do is a mega effort. However day by day I get little glimmers of hope.

I suggest you copy what you wrote to me and get some positive replies from others who have experienced our lives. I have been helped so much by reading other peoples take on things, and I hope you will be to. Please let me know how you are.

love Bastan. xx

 

[Bastan]

Shellyd and Grannie G,

Thank You for your responses, Grannie G, you will never know how very much you have helped me. I am starting to realise that me wasting my life sat at home in chaos is not going to help Nats one iota. I am relatively young at 56 though I look and feel 10 yrs older. I am going to change that, one day at a time.

Shellyd I feel every word of your post, I know it. Take your own advice too, it is very good. Get concentrating on those girls of yours, they will have missed you. Not the easiest of ages, (indeed I called the teenage yrs 'living with the enemy') but they need you now. I have found having my family around me such a comfort.

I have been told I 'stink' so I am going to push myself into the shower as the 1st step in taking care of me. Who'd ever believe that the joy of a shower, piping hot water on tap, could become an ordeal.

Take care, have fun,
love Bastan xx

 

[Grannie G]

I have been told I 'stink'

You are not alone in being told this Bastan. It reduced me to tears many times.

 

[wendyviv]

hello, I am glad you poured your thoughts out and now realise that you are not on your own. Roy, my husband, was diagnosed in 2003, we had to stop going out about 4 years ago because I don't drive and he would whistle all the time and people did not understand. I swore that I would only let him go if it was for his benefit not mine, I could not get help because he was very aggresive about personal things. I went through the dbe incont. etc. and then he lost the use of his legs and went in for respite care. I am so glad I found a good place because it was decided that he should stay, I said for another week, when I saw how easy it was for them to move him and what comfort he had there after a long time I realised he was contented. He can't speak or feed himself but I go to see him nearly every day and sometimes feed him. He still knows me and makes facial expressions. I wanted to explain all this because I know what you are going through, he has been away now for 10 months. I miss him just as much now I don't want to go anywhere. I used to have hobbies like gardening and I told myself that I will grow some veg. just something to look after, I have the seeds and the books, but my get up and go has got up and gone. We will get friends tell me to get out, I don't want to. I did stop writing to TP because I felt I was wingeing . There are so many people worse off then me, it helps sometimes Please keep writing that is if you have not gone to sleep. I feel as though life is just pretend, lots of love wendy