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

Bastan

Registered User
Feb 10, 2011
483
0
Manchester
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 and before I knew it he was gone. Outcome was, he was missing for 8 hrs on a dark wet and windy night. He had no coat on and was wearing summer sandals. 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
 
Last edited:

Logan

Registered User
Nov 1, 2010
813
0
I am here

Hello,
I am at, what I believe is the beginning of the road which you have journey. It is still taking me resolve to keep on at the medics, but hubby looks so good and is plausible.
Of course you feel bereaved. Everywhere and everything at times like these will feel "a mess" but you will survive. Just look how you have already - and yes! you will carry on - surviving for yourself. With the love and care of your family and friends you will get by - it may not feel like it today, maybe not even tomorrow but all will be well. You are so tired and drained, and no wonder. I am sure that there will be other TPers along to reply to you soon. This is a wonderful site - full of care, compassion and good, sound advice - gained by experience of others. Take care. With love and kindly thoughts - I do understand. Lx
 

Jo1958

Registered User
Mar 31, 2010
3,724
0
Yorkshire
Bastan, hello
My heart goes out to you, I am at the beginning of this journey so can only sympathise and send you (((hugs))) to try to help.
There will be more people along who have more support to offer.
Take good care of yourself, with kind regards from Jo
 

shootingstar

Registered User
Jan 26, 2011
6
0
Republic of Ireland
Hi Bastan,

I was completely engrossed by your story and how you have coped up until now. (I congratulate you for that).

Im only learning how debilitating Alzheimers is and the devasting affects it can have on the family..

I can only say this to you... give yourself time to heal inside. Your husband is in the right care. Maybe seek some medical advise for yourself. Visit your family more often, join a library, try and fill your day. Time is a great healer.. It will get better :)
 

BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
Hello: I am sad to read your story. My husband went into nursing care just over 2 years ago so I understand some of what you are feeling. I have appeared strong throughout including the very difficult period before permanent care, but stress is now showing up physically and I am receiving hypno therapy for that.

I wonder if you would benefit from counselling or similar. I suggest you talk to your GP about it.

I also feel you will benefit from sharing your thoughts here on TP as so many understand what you are going through.

Best wishes
 

clare7482

Registered User
Oct 7, 2010
9
0
Ashby-de-la-Zouch
Hi Bastan

I applaude you for being so brave! I am at the beginning of our journey, We are just waiting to find out if my 40 yr old husband has CJD or Frontal Lobal Dementia. I have already started grieving, I know, for the parts of Aaron that I have already lost and can't imagine how it will feel if/ when he needs extra care. You need to live for your family, people like us can't have the luxury of giving up :)

Thinking of you x
 

TinaT

Registered User
Sep 27, 2006
7,097
0
Costa Blanca Spain
I can fully understand and almost share every word you have written. Even though my journey through my husband's dementia has now lasted more than 10 years now, I still feel the grief and the pain of being left a widow, yet still a wife robbed of the future retirement we had worked so hard for.

I hope that by posting and reading replies here on TP that it has eased your pain a little. This site allows us to share our feelings of isolation and shock and to know that there are others who understand because they too are living through it and know how devastating this illness is for both sufferer and carer.

Although it has been a hard, painful and lonely time for both my husband and myself to be separated in this way, I know that it has been the illness which has caused this and nothing I could have or should have done could have changed the course of events.
In the end we have no choice over this illness which dominates our lives.

Although it has been hard to accept, I know that my husband has been well cared for by the staff for the past few years, and difficult as this is to write, I feel he is getting more consistent and patient care than I as a lone carer carrying all the responsibility could do.

My very best wishes to you.

xxTinaT
 

gigi

Registered User
Nov 16, 2007
7,788
0
70
East Midlands
Hello Bastan,

I can't add much more to what others have said..but wanted to let you know that I understand how you feel.

I've felt much of it myself since my husband was taken into emergency respite last year and will never come home.

His illness is more real somehow. New emotions, feelings of despair, emptiness and nothingness.

It does make the illness more real..although it was real enough when you were coping at home. The distance, now your husband is in care, allows you to see it in perspective.

The hard part is accepting that this is the only way it can be..and trying to find yourself again after such traumatic experiences.

You are grieving for what you have lost and for what will never be.

But you will come through this. I still have days of despair. These days can be bleak..and they are the times when you need a friend..or a member of the family..just to link you back to the real world.

You don't say how old your children are. I hope they are a positive support to you.

Talking Point is always here and it's good to see that you have lots of support already.

Please don't hesitate to post and let us know how you're doing.
Love xx
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,001
0
72
Dundee
Hi Bastan. I am somewhere along the road you are on but not so far along as you are. We are very lucky that Bill's` progress in the disease has been slow. I am now getting worried about leaving him alone.

Sorry, not much help but masses of sympathy. xx
 

ceetee

Registered User
Nov 18, 2010
119
0
Bedfordshire
Dear Bastan,

I felt very sad reading your post. I don't know how you have coped for this long...I suppose it is the love for the person rather than taking the illness personally. I am only beginning our journey, yet I know I have lost my hb forever already. I hope that I can find the same strength as you to carry on until there is no more I can do. Thinking of you and hope you can come to terms with the new part of your journey! Love, Ceetee xx.
 

penguin629

Registered User
Nov 9, 2008
54
0
Shropshire
hello Bastan

I am a long way down the road from you but I have walked this same path and I know how you feel. My Dad is 67 and has been in care for almost 2 years. Everything your husband is is everything my Dad is and the pain is unbearable. You're right when you say it's a bereavement. I miss my dad but when I visit it helps little.

I know how I feel compares little to how my Mum feels. She struggles to go on but she does. She physically forces herself to go out, do stuff around the house, make plans because at 62 she could have years left. You will find the strength. Believe me. It takes time. Be kind to yourself. Think about counselling. It helped me when I reached that point that any song or news article made me cry like a little girl.

It's hard and it doesn't really get any easier, though I expect it does for some people. Find comfort in the fact that your husband is safe and secure and he knows nothing of this. It is an anaesthetic.

take care. Sadly there are a lot of us out there. We know what you're going through

Love Jo
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
Hello Bastan

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.
And this is how you cope. The goalposts keep moving and you grow with it.

It is early days for you as far as residential care goes. Your home is a mess, you feel you are a mess. Give yourself time to put your house in order and to put yourself in order. Give yourself the same time you gave your husband when the goalposts kept moving.

I see you are from Manchester. We relocated from Manchester to Kent in 2002 but my husband wanted to `go home`. We went for a visit. My idea was to lay the ghosts, to help him see there was nothing left in Manchester for him.
We stayed at a hotel in Piccadilly. I went to the toilet. He went for a walk. He was missing for four hours . He was found by the police in West Didsbury. He had walked there, looking for `home`. We had lived in West Didsbury for 6 years.
So I know some of what you have had to endure, and some of the other things too.

My husband has been in residential care for one year. His aggression has gone, his mobility has gone. His dementia has progressed and he is now contented. Life is better for us than it has been for 10 years.
I`m glad I was able to cope and I`m sure you will cope too. Give yourself time. Be kind to yourself as you were kind to your husband.
It is your turn now. xx
 

Bastan

Registered User
Feb 10, 2011
483
0
Manchester
Thank you so much for all your responses. I feel I will survive this, I know the key is acceptance. Once we accept that this is how it is, I believe it gets better. However theory is so much easier than practice, is it not!

I visit with such good intentions but I find it soul destroying to see so many people with such severe problems and knowing my husband is one of them, just gets to me. I often leave in tears. Don't get me wrong it's not all doom and gloom, you can't help but laugh (kindly) at some of the conversations/arguments that go on, especially between the ladies. I often take my husband into his room and we dance and laugh, well I dance and he laughs!!!

Tonight I took us a valentines cup cake each to mark the occasion, he ate it all without throwing it down once.(Positive)....... He was leaning to the right so badly, looked so thin and quite frail, the nurses could offer no explanation. His clothes were covered in dried food. (Negative) I looked at him and my heart broke again. I found myself asking God to take him and spare him from anymore of this dignity stripping, isolating illness.

Our children are all grown up, 31, 29 and 28. My daughter 29 lives with me along with her husband and their delightful daughter who is almost three. My eldest daughter and her partner are joining us soon for approx 6 months. My son visits most weekends with his beautiful daughter aged 7......I am truly blessed to have them in my life, however they are suffering too, they have lost their dad as I have lost my husband. I try to be strong for them and there are many things I can't share with them. That is why I am so pleased to have found this site, I just wish I'd found you all years ago.........Anyways I'm here now and want to thank you all once again for kind words of understanding and encouragement

Love Bastan x
 

sad nell

Registered User
Mar 21, 2008
3,190
0
bradford west yorkshire
goodevening Bastan, just wanted to say hello and that i so understand, you could have been been writing our story, so glad you have such a loving family supporting you, will speak later love Pam
 

lin1

Registered User
Jan 14, 2010
9,350
0
East Kent
Hi Bastan

Sending you a ((((HUG))))
You have been through so much for a long time and it has taken its toll on you.
Its time now to look after yourself , give yourself the high level of care you deserve and need .

I too wish id found TP much sooner,
 

muriel.elliott

Registered User
Aug 21, 2010
504
0
Berkshire
Hi Bastan,
I really do feel so sorry for you. I am about to get my Bryan into a Nursing Home as he has deteriated a lot this last few weeks. He has also got Lewy Bodies and Vascular Dementia. It is so hard to come to terms with it and make that decision but he does need 24 hour care now. I just wish he would go to sleep peacefully in his own bed or chair and although he has a bad heart i really do not think that is going to happen.
I do have 3 super children who give me so much support but at the end of the day it is us who have to make that final decision. I just hate myself so much already.
I will post a general message to all you lovely poeople soonbut i have to go now, expect carers for pad changeany minute.
Love and hugs to all, Muriel xx
 

merlin

Registered User
Aug 2, 2006
139
0
Surrey
Hi Bastan

I'm about 3 years down the line in the CH with my wife in the latter stages of sementia. She also leans over and cannot of course communicate.

I too went through the same emotions as you when I first visited my wife but by trial and error found that I could cope, at least on an emotional level, by contributing to the care. I give her her supper and after that get her on her feet and have a gentle walk then sit down for a bit before getting her ready for bed ie washing her faceand hands and cleaning her teeth (as best I could) before sitting her in the lounge for the night shift to put her to bed.

Somehow by going in late PM staying about 4 hrs and getting home starving hungry and tired at about 21.00, getting a meal while watching TV and then crashing out I got over the empty house syndrome. Made life a bit better and allowed some freedom during the day without too much guilt.

If the CH say that upsets their routine tell them to go jump!

My own experience only, hope it helps

Merlin
 

susiesue

Registered User
Mar 15, 2007
2,607
0
Herts
Hi Bastan

Your story sounds so much like my own - my husband was also a very successful self made business man - I can fully understand how upsetting it is to watch them deteriorate before your eyes.

You are so right too about the goal posts moving and like you say I quite surprised myself with what I managed to cope with.

It is hard to realise that your husband is now part of the dementia unit.

My husband was 64 when he was first 'probably' diagnosed with dementia.

Try to take things easy - you will learn to cope eventually but I agree it is so upsetting.

Love
 

Bronwen

Registered User
Jan 8, 2010
602
0
85
Bristol
Hi Bastan..I hope all the previous posts have helped you..like many others, you could have been writing my life story with my dear husband. Eventually, I had to agree with Trevor going into care last October, but he rallied round so well that after three months, I m trying with him home again, but if I am honest it isn't working and I realise now I had far less stress when he was in care,but I just couldn't let go...this is a truly awful situation for all of us to be in and we can only go with our instincts.

Life will get a little better for you, especially if you aren't run ragged all the time andmy experience of Care Homes is that they really do care.

love
Bronwen x
 

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