My husband has Alzheimer’s

[Jackie77]

Just can’t take anymore
How do I carry on watching things just get worse everyday
a new hurdle just around the corner waiting to be dealt with
The isolation
The loneliness
When did I last laugh
Where did my husband go the man I loved and he loved me now he Just stares at me
I’ve become a carer and not a wife anymore
I’m 68 and my husband is 69 we should have been enjoying our retirement he is totally dependent on me as he is unable to care for himself anymore unable to feed wash or dress himself and his mobility is limited
How do I carry on for him ?

 

[JaxG]

@Jackie77 There is nothing I can say other than you are not alone. It takes away the future of the PWD but also that of their carers. It is the loneliest place and every day I just pray that it doesn't go on for too long. Nobody can know what it's like until they are in this position. You will find support on this forum .... for me it's been a life saver. Look after yourself

 

[canary]

((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))) @Jackie77
We carry on one day at a time, or even one hour at a time
I got carers in to help me
When it all got too much for me I booked some respite.

Do you think it has got to the stage when his needs are too much for you to meet and he now needs a care home?

 

[Jackie77]

@Jackie77 There is nothing I can say other than you are not alone. It takes away the future of the PWD but also that of their carers. It is the loneliest place and every day I just pray that it doesn't go on for too long. Nobody can know what it's like until they are in this position. You will find support on this forum .... for me it's been a life saver. Look after yourself

((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))) @Jackie77
We carry on one day at a time, or even one hour at a time
I got carers in to help me
When it all got too much for me I booked some respite.

Do you think it has got to the stage when his needs are too much for you to meet and he now needs a care home?

Thank you

 

[Jackie77]

Thank you

 

[cupcakecat05]

It’s honestly heartbreaking I absolutely agree. The sadness and pain is so much. I watch my mom get frustrated and sad, she states many of the same things you did relating to her feelings about caring for my father. My father seems to be earlier along however.

Best wishes~

 

[CAL Y]

@Jackie77 . I’m so sorry for your situation.
For myself, I have to say that the worse things were the feeling that you have lost your identity and still loving a person who is unable to love you back.That hurts so much.

Please keep posting. Even though we can’t help you physically, we are all here to support you.
My husband sadly died 11 weeks ago so in some ways you could say that I’m starting to come out the other side but I believe that it would have been so much harder without the wonderful selfless people on this page.

 

[Sarasa]

Hi @Jackie77, I'm not sure if you received an official welcome when you arrived, so if you didn't a warm welcome from me. As you've seen this is a very supportive place, so I'm glad you've found us.
Do you have any help coming in or does your husband go to any groups or day care to give you a bit of a break? I don't know if the links below will be of help to you. Your local council will probably also have information about things that are available, and it might be worth looking on church notice boards etc in your local area. For instance I was in a National Trust house last summer and found out they had a gardening group intended for anyone in the community that wanted to do a bit of gardening and then have tea and cake. The person we talked to made it clear people with dementia were welcome.

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

Getting help and support as a carer

Find out more about the different types of help and support available to you as a carer for someone with dementia.

www.alzheimers.org.uk

I think you need to look out for yourself as well as your husband. If you end up having a carer's break down then what would happen?

 

[Grannie G]

The situation is really overwhelming and exhausting @Jackie77.

I can only suggest you try to get as much help as possible. Help has been virtually unobtainable with Covid but fingers crossed for some improvement if the virus stabilises.

 

[Shedrech]

Just to offer a warm welcome to DTP @cupcakecat05
It's tough for you seeing your parents dealing with this challenging experience ... maybe your mum might join us here too
keep posting with anything that's on your mind, folks here will try to help

 

[Cedaroflebannon]

Hi @Jackie77 - just sending you virtual hugs; it is awful but this group is fabulous and so helpful with a mine of information and experience. Does he sleep at all during the day when you can just “be” If only for 5 minutes? I have so struggled recently with being “the carer“ ; interestingly the auto cue (or whatever it’s called) insists that I type “career” ? I think the isolation has been made worse with COVID etc and nothing being open. Do keep posting - this is a very safe place to rant away and many of us feel better afterwards. Please take care!

 

[cupcakecat05]

Just to offer a warm welcome to DTP @cupcakecat05
It's tough for you seeing your parents dealing with this challenging experience ... maybe your mum might join us here too
keep posting with anything that's on your mind, folks here will try to help

Hello and thank you very much!
I will do so! I’ve been looking for a place for children with parents with early onset Alzheimer’s that is for people vent discuss share etc. My mom often tells me about Facebook groups she is apart of-I hope to find/create a space that can be more teen/young adult targeted.

@Jackie77 Yes my mom often speaks of how she feels that’s she is the caregiver and my father is no longer a parent. It’s heartbreaking from a child’s point of view to watch there relationship change. How long has it been since your husbands diagnosis? I would love you connect with you about what words would’ve helped you in these situations when everything seems so dark so I can say these things and be there for my mom. Best wishes and much love,
Cupcakecat05

 

[Fraisy]

Hi Jackie77
My husband was diagnosed last June he is 77 and it's just starting to really kick in now he has taken to going to bed by 6.00 pm which is in some ways a relief but is this normal?
Also he has suddenly become obsessed with what he calls my 'mental illness' this is where he believes I touch my face too much ! it's quite horrible and I don't know how to deal with that. I am getting panic attacks and night terrors at the thought of what's to come so really feeling for you.
Glad to have found this place. Keep strong.

 

[Desperatejan23]

Just can’t take anymore
How do I carry on watching things just get worse everyday
a new hurdle just around the corner waiting to be dealt with
The isolation
The loneliness
When did I last laugh
Where did my husband go the man I loved and he loved me now he Just stares at me
I’ve become a carer and not a wife anymore
I’m 68 and my husband is 69 we should have been enjoying our retirement he is totally dependent on me as he is unable to care for himself anymore unable to feed wash or dress himself and his mobility is limited
How do I carry on for him ?

Sending you a big hug. Write a list of things you enjoy doing and make sure you do them as often as you can. Even simple things like a crossword or a walk, reading or painting your nails. I like to do all these things as well as listening to thriller plays on BBC Sounds or Youtube. Anything, as long as it's just for you. Give yourself little treats. Hope you get some help soon. It sounds like you could do with it. x

 

[Olive Patricia]

Just can’t take anymore
How do I carry on watching things just get worse everyday
a new hurdle just around the corner waiting to be dealt with
The isolation
The loneliness
When did I last laugh
Where did my husband go the man I loved and he loved me now he Just stares at me
I’ve become a carer and not a wife anymore
I’m 68 and my husband is 69 we should have been enjoying our retirement he is totally dependent on me as he is unable to care for himself anymore unable to feed wash or dress himself and his mobility is limited
How do I carry on for him ?

Jackie, I can relate to much of this which is one reason I have joined the forum. You are not alone in any of this. I hope you can find some ways of looking after yourself too. Two things which help me are when I manage to fit in a little exercise and turning to prayer when things are hard. Can you take some time out in another room say to read or listen to music? What did you used to enjoy which you could do at home?

 

[Smilerswife]

Just can’t take anymore
How do I carry on watching things just get worse everyday
a new hurdle just around the corner waiting to be dealt with
The isolation
The loneliness
When did I last laugh
Where did my husband go the man I loved and he loved me now he Just stares at me
I’ve become a carer and not a wife anymore
I’m 68 and my husband is 69 we should have been enjoying our retirement he is totally dependent on me as he is unable to care for himself anymore unable to feed wash or dress himself and his mobility is limited
How do I carry on for him ?

Hi, I know exactly what you mean, I feel exactly the same. My heart goes out to you. I hope you have family/friends to turn too. My husband was diagnosed with Alzheimers and vascular dementia and then had a stroke which took away all his mobility and ability to do anything for himself. It also altered his personality. He went from the most laid back, friendly guy to a miserable, grumpy one!
Some days I catch a glimpse of his old self but mostly he is angry with me and shows no understanding of how much looking after he needs. We have carers coming to do his personal care but mostly it's down to me.
It is such a cruel illness for everyone concerned. I hope you find some solace in knowing you're not alone

 

[JaxG]

It is so hard. My husband is angry and unpleasant and last week I reached breaking point, my chest was tight with stress and I knew I needed a break. He refused to stay with his brother so this week I went to my daughter for a couple of days. Apparently he is deemed as having capacity, what a joke! There is no help for carers, and while I was away I realised how intolerable my life has become. I have to repeat myself a hundred times a day, I have to monitor everything he does because he is so confused and this makes him angry and resentful. I tread on eggshells every day, live in my bedroom and still have to work due to the debt he created. He can take the dog out for a short walk and eat, that is his life while a am run ragged. It is no life. The only comfort is knowing that we are not alone.

 

[Smilerswife]

It is so hard. My husband is angry and unpleasant and last week I reached breaking point, my chest was tight with stress and I knew I needed a break. He refused to stay with his brother so this week I went to my daughter for a couple of days. Apparently he is deemed as having capacity, what a joke! There is no help for carers, and while I was away I realised how intolerable my life has become. I have to repeat myself a hundred times a day, I have to monitor everything he does because he is so confused and this makes him angry and resentful. I tread on eggshells every day, live in my bedroom and still have to work due to the debt he created. He can take the dog out for a short walk and eat, that is his life while a am run ragged. It is no life. The only comfort is knowing that we are not alone.

Hi, I'm so sorry you can't get more help. Citizens Advice may be able to help with debt management, they are good at helping to make a plan to pay only what you can afford. Have you applied for benefits, either PIP or Attendance Allowance? It's good that you spent time away. I have had 7 nights away in 3 years, but every little helps. I don't understand why so may agencies are reluctant to declare lack of capacity, I have come across this often. Rights are protected under law and decisions are made in the person's Best Interest, so they are safeguarded.

 

[JaxG]

Hi, I'm so sorry you can't get more help. Citizens Advice may be able to help with debt management, they are good at helping to make a plan to pay only what you can afford. Have you applied for benefits, either PIP or Attendance Allowance? It's good that you spent time away. I have had 7 nights away in 3 years, but every little helps. I don't understand why so may agencies are reluctant to declare lack of capacity, I have come across this often. Rights are protected under law and decisions are made in the person's Best Interest, so they are safeguarded.

Hi @Smilerswife , thank you for your reply. Re the debt, we have a debt management plan and are slowly paying it off. It is so hard not having time to recharge the batteries isn't it, and it can be such a thankless task.

 

[Smilerswife]

Hi @Smilerswife , thank you for your reply. Re the debt, we have a debt management plan and are slowly paying it off. It is so hard not having time to recharge the batteries isn't it, and it can be such a thankless task.

It certainly is! I have to rely on my daughter coming to stay as my sons can't cope with the messy side of things! She works full time in a pressured job so I don't like to ask her often. Glad you have a plan for the money side of things. I'm fortunate in one sense that my OH goes to bed at 7 when the carers come and doesn't get up until they come at 10.30 next day. He can't move on his own following a stroke 2 years ago. I have a monitor so I can hear him but I can sleep most nights. I'd be on my knees otherwise!
It's so good to have this forum as an outlet.