My life has now changed

[Lancysue]

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 ?

 

[Grannie G]

Hello Lancysue

does anyone else ever feel this way ?

I think many of us have felt this way at some time or other.

he cannot even make a cup of coffee properly or cook a meal

My husband did all the cooking when he was well. When he became ill and became confused by the sequence of cooking and all the ingredients he was so distressed I felt sorry for him.

This is what dementia does to some people and it slowly takes away their self esteem and independence.

I know how demoralising lack of appreciation can be. I know how lonely life can be.

The future may look bleak but what kept me going was it could have been me.

 

[Penmon79]

Lancysue, I'm so sorry that you are having a tough time. Caring for someone like this is so difficult and if you're on your own it must indeed be a lonely place.
I don't really have much to offer you in the way of advice but I didn't want you to make your first post and go to bed without any response at all!
One thing I would suggest is that, if you haven't already, you ask Social Services for a carer's assessment and that you seek support from whatever carer's group is available in your area.
All the best,
Susan

 

[Kjn]

Completely understand , mmm managed to get dad to go to various clubs .
Started with age uk all day
Dancing with her
Singing for the brain
Art club for dementia
Then day care specialising in dementia care 2days a week.

You both need more help xx

 

[Malalie]

Terrible situation for you - can’t compare it at all with me and my husband looking after MIL.

She’s changed from being the sweetest loveliest person into someone I don’t like at all. But I wasn’t married to her- it’s a different case altogether. You have my full sympathy and I’m sure that someone in your particular situation will come along soon and be more helpful.

On the Alzheimer’s Society homepage, there is a section which gives contact details for help available in your area. Sorry, can’t manage a link, but it’s on the first page, and you can plug your post code in and see whats happening around you. The Alzheimer’s cafes seem to be very popular, giving aid to both sufferers and carers from what I’ve heard from this forum…

Please don’t suffer in silence - the people on here are very kind and knowledgeable - I’m finding this forum very helpful and comforting……

 

[1mindy]

Lancysue, I know it exactly. I went through that stage when my husband was at home. I never expected appreciation as he was not able to think like that,but it was exhausting. It wasn't his fault ,clearly,but I fell out of love with the man in front of me. Now he is in a home,I visit as do the children,because we care about his welfare and to ensure he is OK. But we get on with our lives without him now. We speak about him,and shed tears,as we do when we visit,the tears are complicated as it is I think just to see him as he is with no hope of anything better. I am no longer in love with him, but I do care. I am trying to build my life without him so that I have a future for however long that may be,aware that 5 years from where I am he started with dementia.Look after yourself and ask for help ,it should come if you shout loud enough.

 

[marionq]

Lancysue, I know it exactly. I went through that stage when my husband was at home. I never expected appreciation as he was not able to think like that,but it was exhausting. It wasn't his fault ,clearly,but I fell out of love with the man in front of me. Now he is in a home,I visit as do the children,because we care about his welfare and to ensure he is OK. But we get on with our lives without him now. We speak about him,and shed tears,as we do when we visit,the tears are complicated as it is I think just to see him as he is with no hope of anything better. I am no longer in love with him, but I do care. I am trying to build my life without him so that I have a future for however long that may be,aware that 5 years from where I am he started with dementia.Look after yourself and ask for help ,it should come if you shout loud enough.

This is the fundamental problem of being a carer for someone who has changed so much. Two years ago the solution seemed to be a care home for my husband and I was definitely breaking down. I still have days when I want to run away but we are both n a much better place and I would have to think long and hard about a care home now. Day care has been my salvation and gives John company, entertainment, meals out, and most of all appreciation for what he is now from people who can be dispassionate because it is their job and not their husband, friend, lover who is in front f them.

We began with one day which felt like a release from prison and have worked up to four days. This gives me time to be me and address my own needs and health care. Please look for practical solutions Lancysue as a starting point to coming to terms with a cruel situation.

Good luck.

 

[Lancysue]

Thank you for listening

Lancysue, I know it exactly. I went through that stage when my husband was at home. I never expected appreciation as he was not able to think like that,but it was exhausting. It wasn't his fault ,clearly,but I fell out of love with the man in front of me. Now he is in a home,I visit as do the children,because we care about his welfare and to ensure he is OK. But we get on with our lives without him now. We speak about him,and shed tears,as we do when we visit,the tears are complicated as it is I think just to see him as he is with no hope of anything better. I am no longer in love with him, but I do care. I am trying to build my life without him so that I have a future for however long that may be,aware that 5 years from where I am he started with dementia.Look after yourself and ask for help ,it should come if you shout loud enough.

Thank you for your post, it's good to know that other people share the same feelings, I no longer love my husband and as he is 12 years older than me I feel like I am now caring for my father, where has that vibrant, caring lively husband gone - the dementia has stolen him!
He does go to a local dementia cafe but only for 2 hours each week, I don't go with him as those 2 hours are the only hours I get without him, there is nothing else in our area as we live in a very rural town, I think more should be done to support the carers because sometimes I feel so down that I feel like just getting in the car and driving away and the problem is - I know that the situation is going to get worse.
I know that I must come across as a very ungrateful and depressing individual but I am only 62 and feel like my life is passing me by. Thank you for your kind words.

 

[Lancysue]

No day care in my area

This is the fundamental problem of being a carer for someone who has changed so much. Two years ago the solution seemed to be a care home for my husband and I was definitely breaking down. I still have days when I want to run away but we are both n a much better place and I would have to think long and hard about a care home now. Day care has been my salvation and gives John company, entertainment, meals out, and most of all appreciation for what he is now from people who can be dispassionate because it is their job and not their husband, friend, lover who is in front f them.

We began with one day which felt like a release from prison and have worked up to four days. This gives me time to be me and address my own needs and health care. Please look for practical solutions Lancysue as a starting point to coming to terms with a cruel situation.

Good luck.

Thank you for your reply, my husband goes to a dementia cafe but only for 2 hours each week and I feel like a weight has been lifted from me for those 2 hours, just before Christmas he went to stay with his son for 5 days and I felt like a normal and happy person whilst he was away but as soon as he returned the hopelessness returned with him.
And because we live in a rural town there are no day care centres which for both my husband and myself would be a lifeline.
Once again thank you for your kind words.

 

[Guzelle]

Thank you for your reply, my husband goes to a dementia cafe but only for 2 hours each week and I feel like a weight has been lifted from me for those 2 hours, just before Christmas he went to stay with his son for 5 days and I felt like a normal and happy person whilst he was away but as soon as he returned the hopelessness returned with him.
And because we live in a rural town there are no day care centres which for both my husband and myself would be a lifeline.
Once again thank you for your kind words.

Hi Lancysue

I often feel the same my husband is 25 years older than me was diagnosed in August with mixed dementia but had it about 4 years before that. He can no longer use the microwave but does manage to heat milk for coffee in a pan. I work 3 days per week term time and he goes to Age uk day centre one of the days.He hates being on his own. He is taking memantine and this has helped him keep going and be more reasonable to live with. But I have days when I want to run away and have some fun and be me and not a carer . I am 57 but feel older some days. There is only one end to it and that's not a pleasant thought either. We try and go out to coffee shops and visit relatives so he doesn't get too bored.

 

[Beth56]

Hi Lancysue, I feel exactly the same as you


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[Shedrech]

hi Lanceysue
welcome to TP
just in case there are any services you haven't come across, here's a link to the AS site to find local resources
https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200121&_ga=1.93581918.213745934.1462100281#!/search
best wishes

 

[Trisha4]

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 ?

I totally empathise with everything you say. I thought the other day that the worst part of caring for a life partner with dementia for me is that the one person I want to talk to about our situation is my husband of 46 years and he's the one with dementia. I feel so lonely at times with voids no one else can fill. And, if I'm honest, there are times I resent that I can't do things I used to because he can't be left so I gave up all my activities. Then I feel guilty about my feelings because he certainly didn't choose to be like this. I feel that 2017 may be the year that I have to make painful decisions about his future care and I dread it. My husband cannot dress himself and can't go to the toilet alone although he is physically fit. Our local council in East Yorkshire do provide a social sit for up to 6 hours once a fortnight and also cover any medical appointment for me. Might be worth checking if there's anything like that in your area. My thoughts are with you xx


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[Slugsta]

Hi Lancysue,

You certainly don't sound 'ungrateful and depressing' - you sound like someone in a terribly difficult situation without adequate support!

I do hope you are able to find some extra help and support from somewhere, for the sake of your own health and sanity.

 

[Roseleigh]

Hi Lancysue, I feel exactly the same as you


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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.

 

[Krug 22]

[Q I can relate too. My husband is 23 years older than me. He has not been formally diagnosed but he has had a lot of physical health problems and I dare not leave him on his own for long periods. My salvation has been reading but it is a very isolating lonely life. He has always been a controlling difficult man and he is getting worse.
I now have a 'befriender' organised by our local 'support for carers who will hopefully phone me once or twice a month and hopefully that will help.
Like you LanceySue I wish I could walk away but cannot.
All I can say is your feeling are quite quite normal. Being a carer is sheer hell at times but you are not alone - I bet most of us feel the way you do at times.
Take care of yourself and keep posting.

 

[mary2000]

I just wanted to say I feel very similar to how you feel.

My husband is older than me and I also am disabled which doesn't help the situation but he hasn't been formally diagnosed yet. He was diagnosed with MCI in the summer and is currently being reassessed due to ongoing issues. However, I feel my husband that I am married to has been taken away and replaced by someone who is irritable, moody and ungrateful. He is very aggressive at times and although he tells the memory nurse 'life has never been better' and he 'feels wonderful' this is not what he portrays to me on a day to day basis and I have told her that. He never misses an opportunity to tell me that I don't treat him well (I just don't think I could do anymore than I do with my physical restraints) and I try so hard to remain patient but find that incredibly hard.

I despair at times and my poor daughter bears the brunt of me 'off-loading' onto her to try and get it out of my system.

So really all I am doing is explaining that I know exactly where you are coming from and I think most people on TP do as well if not all of us.

I hope with the posts that have been made already that you are able to get some more support as I am sure that will be helpful. Any support my husband is offered is flatly refused at the moment by him and he refuses to go to any support group or day centre but he has never been one to mix in large groups so I am not surprised by this.

Thinking of you and sending hugs x

 

[Emac]

Hello Lancey Sue

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

 

[sajimjo]

My feelings are exactly the same LanceySue and have been for some time. My own partner needs help with most things now, even coping with cutlery to feed himself, he can be just like a child at times. We used to walk a lot but due to epileptic fits and medication he can only walk may be 100yds. So I don't get exercise either.
We don't have family or many friends in the area who can give me a little relief. He does go to a day care once a week (Men in Sheds - which is brilliant) but I have to transport him, which is 2hrs gone.

Certainly reading TP has helped me a lot although I don't have much time to post myself.
Thank you everyone, wishing you peace and strength for the New Year.
Sajimjo

 

[LYN T]

Lancey Sue, I'm so sorry that you are feeling so depressed. Dementia is a very depressing illness for both the PWD and the Carer; it drags us down and it's all so cruel.To see our OH change his personality and his abilities fade is heartbreaking.

I feel luckier than most who have posted on this thread because I never stopped loving my Husband. It must be very difficult for those who have fallen out of love with their partners. Oh dear, that sounds very judgemental but I can assure you it wasn't meant to. To no longer love someone but still carry on with caring duties is amazing. Only on TP can people voice their innermost thoughts and concerns-and that's as it should be.

Lancey Sue I do hope that you get some help soon.


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