Life ?

[henhut]

I am alive I guess! After all I wake up each day and I am breathing but can I say it is a life well maybe it is an existence not much morethan.
Try as I may it becomes harder to feel alive being a carer for someone with dementia. The spark goes out of the window followed by the sense of humour. Just sometimes I ask myself "where are my human rights.)

 

[Whisperer]

Dear Henhut

I can recognise some of what you are saying. Each day blurs into another, the colour seems to go out of the day to day. Please accept my best wishes and a hug across the Internet. Wish I could say more that will help. Hopefully others will be along later to say better than I can. I can usually give myself a lift by standing in the dark and looking at the stars. Is there anything you know which still gives you a sense of wonder? Sorry best I can offer.

 

[henhut]

Oh I do that too and the birds singing help just no quality of life.
Thank You for your kind words and hug.
I just miss all that kept me well in mind and body hard to keep up hobbies aint it.

 

[JGDMG]

I am alive I guess! After all I wake up each day and I am breathing but can I say it is a life well maybe it is an existence not much morethan.
Try as I may it becomes harder to feel alive being a carer for someone with dementia. The spark goes out of the window followed by the sense of humour. Just sometimes I ask myself "where are my human rights.)

I am sorry you are having this terrible time. I wonder if you have exhausted all options. A carers assessment, to see if you need and are entitled to support. There are carers associations you can talk to who can offer so much in the way of help and guidance. An assessment of the person to see what support is available and whether their needs are being met. At the very least some respite care so you can rest and recover and build up your reserves. If you've already done all this, and just needed to tell people how you feel, well even that can help I hope. Can you have any time during the day to have some space to concentrate on something you enjoy? This will pass, and you will get your spark back.

 

[henhut]

Just needed to say it instead if putting my best foot forward all the time.
Pwd is changing over meds to try and improve things. Pwd had personality disorder before dementia.
Have a fab community nurse and when corona settles a bit more eldest daughter will come and give me an afternoon. Jyst at times there seems no end and things inly get worse. But lets be honest hard even with support to feel you have any quality of life.

 

[Kapow]

I am alive I guess! After all I wake up each day and I am breathing but can I say it is a life well maybe it is an existence not much morethan.
Try as I may it becomes harder to feel alive being a carer for someone with dementia. The spark goes out of the window followed by the sense of humour. Just sometimes I ask myself "where are my human rights.)

Yep...that's me at times...at times I feel I am losing myself for my OH....

 

[henhut]

Yep...that's me at times...at times I feel I am losing myself for my OH....

True. Take Care best you can.

 

[None the Wiser]

You feel guilty for thinking these things so it’s always helpful when someone on here says it for you.
My husband didn’t go to sleep last night until 3.45.am, so neither did I as he hallucinates and wanders, and I have to be on alert in case he suddenly becomes frustrated and angry and throws things around or tries to escape. It’s at these times (and they’re happening quite frequently now), that I feel like you @henhut .
I wonder where I’ve disappeared to, whether I will ever be able to feel the joy of life again. Of course there are moments throughout every day that are fine, and I make an effort to keep in touch with friends etc. , however somehow it feels grey most of the time. As you so rightly say @Whisperer ’the colour has gone out of each day’.

 

[Sunshine2*]

Hello everyone, I understand everything you say. Every day blends into the next and with my husband having numerous conditions for over 30 years and being disabled with MS for 24 of them and having MS Dementia for at least 8 years, I just feel so drained. He speaks into the early hours, snores and makes choking noises and has muscle spasms throughout the night and his legs come out of the covers. I can hear him kicking his indwelling catheter night bag. He gets so angry too, when I try to stop him wanting to get dressed at 4am.
I have Osteoarthritis, carpal tunnel syndrome and Cervical Spondylosis in my neck and spine due to, in my opinion, of lifting him and pushing him in his wheelchair. I certainly don’t have the power to pick him up anymore.
Today, it was all my fault apparently, when he spilt his water down his front, whilst taking his epilepsy medication.
I literally have to do everything for him, including the house and garden and all he speaks about is himself.
I thought he would sleep more, but he seems to need less sleep, which I don’t understand.
Yes, listening to the birds and the robin following me around the garden and watching them all feeding on the bird feeders is fun.
I would love to walk along the sea-shore...
A distant memory! Husband still shielding and wheelchair doesn’t allow much.

 

[kindred]

I used to write. I must endure. 100 times each day to steel myself to carry on as sole carer fir my husband with severe dementia. when I asked social services for help they said, well who do you think is going to look after him, then?
I had no life, I was a slave to his insanity. I thought it would never end. Then it did, he fell over trying to use the wardrobe as a toilet and hit his head, ambulance called, A and E and doctor said this ends here, he is not going home and lovely social worker found him a local nursing home which restored my faith in humanity. Husband thrived and we had such a lovely final year.
Terrible times will pass, there is some light, all fellow feeling to you. Kindred

 

[JGDMG]

Just needed to say it instead if putting my best foot forward all the time.
Pwd is changing over meds to try and improve things. Pwd had personality disorder before dementia.
Have a fab community nurse and when corona settles a bit more eldest daughter will come and give me an afternoon. Jyst at times there seems no end and things inly get worse. But lets be honest hard even with support to feel you have any quality of life.

so true, I do agree with you, I'm glad you have some support at least.

 

[JGDMG]

Just needed to say it instead if putting my best foot forward all the time.
Pwd is changing over meds to try and improve things. Pwd had personality disorder before dementia.
Have a fab community nurse and when corona settles a bit more eldest daughter will come and give me an afternoon. Jyst at times there seems no end and things inly get worse. But lets be honest hard even with support to feel you have any quality of life.

sorry pressed the button too soon but wanted to say its good to be so honest about how you are feeling. We are always aware, or being told or its suggested that we sort of look on the bright side, count blessings, etc but caring for someone with dementia tests most people to their limit, and its daft to pretend otherwise. I admire your honesty. Its the only way we can help and support each other by being honest isn't it.

 

[henhut]

Hello everyone, I understand everything you say. Every day blends into the next and with my husband having numerous conditions for over 30 years and being disabled with MS for 24 of them and having MS Dementia for at least 8 years, I just feel so drained. He speaks into the early hours, snores and makes choking noises and has muscle spasms throughout the night and his legs come out of the covers. I can hear him kicking his indwelling catheter night bag. He gets so angry too, when I try to stop him wanting to get dressed at 4am.
I have Osteoarthritis, carpal tunnel syndrome and Cervical Spondylosis in my neck and spine due to, in my opinion, of lifting him and pushing him in his wheelchair. I certainly don’t have the power to pick him up anymore.
Today, it was all my fault apparently, when he spilt his water down his front, whilst taking his epilepsy medication.
I literally have to do everything for him, including the house and garden and all he speaks about is himself.
I thought he would sleep more, but he seems to need less sleep, which I don’t understand.
Yes, listening to the birds and the robin following me around the garden and watching them all feeding on the bird feeders is fun.
I would love to walk along the sea-shore...
A distant memory! Husband still shielding and wheelchair doesn’t allow much.

I should not really complain after reading about your situation.
And yes walking the tideline is something I miss too.

 

[MaNaAk]

Oh I do that too and the birds singing help just no quality of life.
Thank You for your kind words and hug.
I just miss all that kept me well in mind and body hard to keep up hobbies aint it.

Dear @henhut,

When I cared for dad we laughed together and then I would give him a hug. Please take a look at my thread 'The Lighter Side Of Alzheimers'.

Dad is no longer with me and I can tell that despite the bad memories I treasure the times when I took him out. Also it is only through caring for dad that I can treasure the things we did together.

Hugs from

MaNaAk

 

[None the Wiser]

Hello everyone, I understand everything you say. Every day blends into the next and with my husband having numerous conditions for over 30 years and being disabled with MS for 24 of them and having MS Dementia for at least 8 years, I just feel so drained. He speaks into the early hours, snores and makes choking noises and has muscle spasms throughout the night and his legs come out of the covers. I can hear him kicking his indwelling catheter night bag. He gets so angry too, when I try to stop him wanting to get dressed at 4am.
I have Osteoarthritis, carpal tunnel syndrome and Cervical Spondylosis in my neck and spine due to, in my opinion, of lifting him and pushing him in his wheelchair. I certainly don’t have the power to pick him up anymore.
Today, it was all my fault apparently, when he spilt his water down his front, whilst taking his epilepsy medication.
I literally have to do everything for him, including the house and garden and all he speaks about is himself.
I thought he would sleep more, but he seems to need less sleep, which I don’t understand.
Yes, listening to the birds and the robin following me around the garden and watching them all feeding on the bird feeders is fun.
I would love to walk along the sea-shore...
A distant memory! Husband still shielding and wheelchair doesn’t allow much.

Oh my goodness @Sunshine2* life really has been unkind to you. I’m so sorry to hear about your situation. Thank you for sharing it. It will make me reassess mine. I can’t help saying life seems so unfair. I do hope you continue to find strength to cope. I will think of you every time I feel challenged. Take care.

 

[Kapow]

True. Take Care best you can.

Yes,you have to remember sometimes that you too are a human being and entitled to a life,then......you look at the clock and another day has gone where there isn't hardly any time for yourself.You take care too...x