My life has now changed

LizK

Registered User
Dec 18, 2015
124
Surrey
Like Lyn T I still love my husband after 11 years of Alzheimer's taking it's toll on him and me. He's been in care for 9 months now and I find it much easier to love him now the strain of caring for him 24 hours a day is lifted.

Liz
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Loved ones in a CH

Hello Lanceysue, A warm welcome to talking point, l was where you are now 16 months ago, l left it to long to get help and support, tried so hard to manage on my own.
I had a nervous breakdown, my husband went into a care home. It was the best thing that happened, it gave me my life back. My health got better, we have been together 56yrs, so grateful for a long and happy marriage until Alzheimers came along to spoil our life.
Please get some help you need a break, get intouch with Social Services they could arrange some respite. Keep posting there is always someone here to talk to.
 

esmeralda

Registered User
Nov 27, 2014
3,072
Devon
I think part of the hurt of this is that it's not just your life that has changed, your relationship has changed. This awful disease turns the equal give and take relationship between husbands and wives into an unequal one where one does all the giving and taking responsibility and the other is as needy and as dependent as a toddler, often throwing the same ungrateful tantrums as a small child would do! Love in these circumstances must change from the 'in love' of equals to the unconditional loving and caring you feel for a child. That's a big loss and everyone greives the loss of the person they used to know and the relationship they used to have. You know the PWD can't love you back in the same way, so you must find other ways to look after yourself and get some of that equal relationship support from family and friends. Only then will you be able to sustain the caring role, for however long you choose to do this. So keep looking for the support you need to give you some respite from your husband. Explore all the options and don't give up till you have found some help. Thinking of you xx
Such a helpful post Emac, I feel dreadfully sad that our relationship has changed, although I'm not sure what I could have done about it, and so selfish sometimes when I try to carry on with the things I used to enjoy.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 

Mal2

Registered User
Oct 14, 2014
2,968
Enfield
Dear Lancysue. I am sorry to hear of your sad situation, which is so upsetting for you.

Dementia takes our loved ones away from us, gradually ( in my case 15 years ). They change, in ways we never even imagined. Though, not through any fault of their own. This dreadful illness devastates whole families. We can each only do what we feel can, or what we are capable of, we cannot feel guilty of decisions or actions we take. Everyone has to try and deal it as best they can. There is no set solutions, no 2 PWD are the same, only some similar.

It breaks my heart each time I look at my husband. He looks the same, he still has those beautiful blue eyes, that sparkle when he looks at me with his lovely smile. My beautiful man, my lover, my friend, who is in there somewhere, trying hard not to give up, losing to this awful disease. Sadly it ends there.

The daily routine of hoisting him up, umpteen times, to wash/dress him, change his incontinence pads, etc, shows me the reality of the 'D' .

Each day I try to make everything, as near to normal for him as it was. He isn't aware of that, and, I dread the day when he may have to go it a CH.

I hope you find some way, in which you can come to terms and manage this awful situation, which is so hard for you. Sending you many ((((((( hugs))))))) M xxx :)
 

Noosh

Registered User
Jan 1, 2017
3
Noosh

Likewise. Beth and Lancysue.
My biggest fear is that by the time this is over my own health could be going down. I knew a neighbour of my mum who's husband had AD, eventually he went into a care home and died within the year. A year or two later she fell, broke her hip, hip surgery went wrong and she ended up using a zimmer. Eek.
I know that fear...and the loneliness of not being able to discuss the situation with my husband....although he is fairly independent in dressing etc. but that is changing.
Still driving but misplaces the car a lot .
I go to a small support group once a month and that is a help.
If there is one in your area.
 

technotronic

Registered User
Jun 14, 2014
224
Everyone's life changes when a partner has dementia, n the ability to live life how it was once becomes harder as the condition progress.
I too thought it would be possible to to continue our lives much as before, but we tend to change n adjust our lives to how things change from day to day as the condition worsens over time
But no matter how much my wife changes cos of this condition she still be the person I met fell in love with n married vowing to care for her in sickness n in health. No matter or had bad it gets or how lonely or frustrated it can make me feel, she's the most important thing n person to me above any life we used to lead together.
Hard as it may be, it's something we have to get used to, giving up a former life to this condition, we've all been n some of us continue to go through caring for someone we love that has dementia.


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Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
These sad posts are so familiar with what was my own situation. I too yearned to discuss this with my darling husband, who was the one with AD, and the loneliness I felt was crushing. I loved my husband so much, but I felt resentment towards this unwanted "guest" who had invaded his brain, and therefore our lives.

He had AD for nearly 12 years from diagnosis, and was in a CH for the last few months. It's now 2 years since he died, and I had to learn how to socialise again, as I'd spent so long on my own. As his AD progressed, I sought Day Centres, increasing from one session (4 hours a day), to 6 days a week, as I was constantly woken by John at night, and I needed a break.

This cost me a bomb, £9 an hour, but it was worth every penny. I know it is time consuming, looking for help, and checking places out, but it was the difference between me going completely up the wall, or hanging on by my fingertips.

I think all of you carers are wonderful. xxx
 

Ronnianne

Registered User
Jan 3, 2017
21
Skipton,North Yorks
Everyone's life changes when a partner has dementia, n the ability to live life how it was once becomes harder as the condition progress.
I too thought it would be possible to to continue our lives much as before, but we tend to change n adjust our lives to how things change from day to day as the condition worsens over time
But no matter how much my wife changes cos of this condition she still be the person I met fell in love with n married vowing to care for her in sickness n in health. No matter or had bad it gets or how lonely or frustrated it can make me feel, she's the most important thing n person to me above any life we used to lead together.
Hard as it may be, it's something we have to get used to, giving up a former life to this condition, we've all been n some of us continue to go through caring for someone we love that has dementia.


Sent from my iPhone using Talking Point
I'm fairly new to caring for my husband, but the AD has progressed rapidly.In spite of having a wonderful son and daughter, I feel so isolated as friends no longer call. I too thought it would be simple to carry on as before, so thank you for letting me know I'm not the only one going through this.
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
I'm fairly new to caring for my husband, but the AD has progressed rapidly.In spite of having a wonderful son and daughter, I feel so isolated as friends no longer call. I too thought it would be simple to carry on as before, so thank you for letting me know I'm not the only one going through this.
I think the shallowness of so-called "old friends", was what disappointed me most of all. I didn't expect anyone to offer to physically help me, but a visit, a phone call even, would have been so welcome.

A few faithful friends continued, and at my husband's funeral, all of the "ghosts", who had disappeared for years, came, saying "I have to pay my respects". No they didn't. :mad: They came to make themselves feel better, and so I nailed a smile on my face, watched them eat my food, drink my drinks, thanked them for coming, and breathed slowly.

The isolation is something that other people, not affected by AD, just cannot understand, so thank God for TP.
 

Ronnianne

Registered User
Jan 3, 2017
21
Skipton,North Yorks
I think the shallowness of so-called "old friends", was what disappointed me most of all. I didn't expect anyone to offer to physically help me, but a visit, a phone call even, would have been so welcome.

A few faithful friends continued, and at my husband's funeral, all of the "ghosts", who had disappeared for years, came, saying "I have to pay my respects". No they didn't. :mad: They came to make themselves feel better, and so I nailed a smile on my face, watched them eat my food, drink my drinks, thanked them for coming, and breathed slowly.

The isolation is something that other people, not affected by AD, just cannot understand, so thank God for TP.
Thank God indeed, and like you Scarlett, it's not that you want physical help, just a simple cuppa with someone, even a phone call, but as you say, the shallow ones fall by the wayside as I've found out these last few months
 

jennypie

Registered User
Jan 5, 2014
126
North yorkshire
I empathise with you totally all those feelings I have or have felt, my husband is 17 years older than me ( this seems to be a thread on here) that said I wouldn't of changed a thing prior to Alzheimer's but now I feel just like his carer and not quite sure about the love bit.
He's just started going to a day Center one day a week for people with dementia I never thought I could do that but he enjoys it doesn't bat an eye lid when I go or collect him and can't remember even going a few minutes after we've left! I felt 'normal ' for those few hours which fly by!! I am lucky we have a lovely daughter lives nearby is still a student so she pops in most days and will stay with dad whilst I go for a swim or shopping.
I can still leave him once I've got him up for and hour to take dogs for a walk - my salvation! Evenings are the worst and lonleyest I also have a private carer who will come once a week for a few hours so I can do my own thing but then I feel I've got to get out of the house and really I'd like just to have the house to myself and chill catch up with the housework which is falling behind the pile of washing which is a constant!!
I find doing something outside of the home with a friend helps me feel normal for that time and gives me a boost even if it doesn't last! Thinking of you all xxx


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dancer12

Registered User
Jan 9, 2017
498
Mississauga
dancer123

My husband was diagnosed with vascular dementia 2 years ago and he is now at the stage where I have to do most things for him - he cannot even make a cup of coffee properly or cook a meal, the problem is that the dementia has changed him so much and I feel that I am now living and caring for a different man to the one I married and I hate to admit that I don,t like the man that the dementia has turned him into.
I feel so lonely as I cannot even have a proper conversation with him and to be honest I sometimes feel that I am just the cleaner,cook,driver etc and to have to look after someone with dementia 24/7 is a very thankless task !
I am finding that I run out of patience with him and he doesn't appreciate all that I have to do for him, the future to me is looking very bleak - does anyone else ever feel this way ?
Hi Lancysue:

You are not alone. We all feel that way. My husband was diagnosed with dementia (FTD & alzheimers) and I have to do everything for him. Get no appreciation in return and worse he feels like he is doing me a favor and he's perfect. I'm the bad one. The only time I can relax is when he goes to bed.

We should all get together & go on our computers at the same time and same day and type WE CAN"T TAKE IT ANYMORE. Maybe it would create such a big electrical charge to get rid of this terrible illness & other illnesses from our planet.

In the meantime MANY HUGS
 

Clunchman

Account on hold
Dec 6, 2016
286
.
I am sorry to say I know exacter how you feel. Caring for someone with vascular dementia is a thankless task. But we do it because we care about the one who has this horrid illness. I wish I had some smart answers, but struggle through each day myself with the knowledge that the work I (and you) do is vital.
 

Wiggy41

Registered User
Dec 25, 2016
37
Eastbourne
Lucysue, please don't feel bad of your feelings of your OH its allowed to feel like that, it's such a wicked nasty illness that I think affects the carer as much as it does the patient. My husband has vasculer dementia diagnosed last April, he's verbaly aggressive, accusing, and I really don't like him anymore. I'm 75 and he's 77. I feel bad of my feelings too, but they won't go away and I know it's going to get worse over the next year or so.Take care, look after yourself love.