For better or for worse

[wightdancer]

At the start of my relationship with my wife in 1964 we slowly got to know each other and eventually became as one.
Now everything is in reverse, and we are slowly coming apart. At the moment, she still sort of knows who I am but is incapable of conversation or expressing feelings other than hunger, thirst or needing the loo etc., She talks but makes no sense and continually picks things up and moves stuff around.

We are joined at the hip as she cannot be left alone and it is illegal to pop out and lock the door with her inside alone at home. For a couple of days a week she went to a day care centre but that was stopped because of health and safety (she undid her seat-belt sometimes when the mini-bus stopped).

I do everything, brush her teeth, wash, laundry, clean, cook, entertain and everything else needed to get through a normal day. Hard to put up with people staring when you are feeding your wife in a restaurant.

We stopped going on holiday 2 years ago when I realised the change of environment was confusing and distressing her.
What I have learnt is that I must not try to stay in my everyday world, I have to join her world at her pace; leave out rational chat and simply communicate with her whenever opportunity arises to connect.

For 55 years my wife has taken great care of me and now it is payback time.

 

[Maggie]

How Heartbreaking for you .
I do feel for you .

You sound such a lovely husband .
I hope you get outside support to help you support your wife ?

 

[Izzy]

I’m so sorry to read of your situation @wightdancer. It so sad to see our loved ones deteriorate like this. Have you any carers who come in to help you? Perhaps it’s time to consider either getting some carers in or if you already have them to consider extending the provision. This might give you some time for yourself, just to get out for a little while.

 

[Grannie G]

Hard to put up with people staring when you are feeding your wife in a restaurant.

Perhaps they feel for you @wightdancer but don`t know what to say or do in case it`s intrusive.

We married in 1963 so I can identify with you.

My husband did all our shopping because he was the driver and all our cooking because he was a better cook than I was. He made packed lunches for me and our son too.
He also managed all the finance because I hated managing money.

When he became ill it was my turn to look after him. I did it willingly and with love but I`m afraid I didn`t have your insight and our life with dementia was stormy and full of my mistakes.

It`s inspirational to read your post. It shines a light on acceptance in the face of deep sadness.

 

[manArgentina]

Hi, just wanting yo give you support, great what you are doing, hope you the best.

 

[wightdancer]

How Heartbreaking for you .
I do feel for you .

You sound such a lovely husband .
I hope you get outside support to help you support your wife ?

We have 2 lovely sons who visit regularly but are not much help in a practical sense. Wish I could swap them for 2 daughters............Ha Ha.

 

[wightdancer]

I’m so sorry to read of your situation @wightdancer. It so sad to see our loved ones deteriorate like this. Have you any carers who come in to help you? Perhaps it’s time to consider either getting some carers in or if you already have them to consider extending the provision. This might give you some time for yourself, just to get out for a little while.

Thank you for that. No we don't have carers as they tend to be quite expensive if say I wanted a day off now and again.
At the moment we cope OK and as long as I don't get sick we will muddle along.

 

[Alex54]

In sickness and in health .... till death do us part.
I was driving to the hospital the other day when the following Get out of jail free card thought went through my head:

• My wife (PWD) has only gone in for an assessment, so it is not my fault she is in hospital.
• She is so drugged up she does not know what is going on.
• Social services want to put her in a nursing home.

So basically I had a guilt-free blame everybody else option to get out of the whole situation. I thought about for almost a second, then lust laughed and continued along as normal.

Seriously your wedding vows will trap you, I will do anything for my wife even although I know it will affect my health in the long term. Try and get some help, have you asked for a carers assessment? it might provide carers a few hours a week to give you some time to catch up with things.

 

[pevensey]

Thank you for that. No we don't have carers as they tend to be quite expensive if say I wanted a day off now and again.
At the moment we cope OK and as long as I don't get sick we will muddle along.

That was so sad to read your post wightdancer, it sounds like your having a horrendous time,, I hope that somehow you manage to get some time for just you to do what you want even if it's just couple hrs. You sound like a wonderful, devoted husband. I'm sitting here waiting for my hubby to come home from respite this morning, Im really anxious and not sure how things are going to be. Hes been away for 5 weeks but I think hes deteriorated since hes been there, mentally, it was mainly physical before. He was never very nice to me when I went to visit him, always told me not to go anymore and lots of nasty things so I'm not really looking forward to him coming home and that sounds VERY BAD. Reading your post put it all in perspective, I don't think I'm going to be as tolerant or patient as you, I will really really try but if hes as nasty as he has been the last few weeks I'm not sure. I'm hoping when hes home in his own surroundings he will settle down. It doesn't help that all our married life which is 57 years, he was always mentally abusive and verbally aggressive, he had his occasional good times but he was always the boss. I don t want to go back to that but knowing it's not his fault. I'm ashamed to say I really enjoyed my few weeks on my own.
Please take care of yourself wightdancer, find time for just you could you do respite for just a week even, my GP arranged it for me as I was really struggling. My hubby has vascular dementia in 4th year. Sending you a virtual hug.

 

[PalSal]

i am so grateful I was only 48 when my hubby (at 49) was diagnosed. There was plenty of discussion early on between my husband and I of the importance of my having a complete and full life. We were always a couple who had time apart...his skiing and foreign trekking , me traveling to visit my family in the USA. I have tried to live my life and meanwhile live up to my vows and commitment. But as wise people have always said on this site, if a person eventually goes into a care home it does not mean the end of our love and care it merely means a another phase of our journey. I bear that in mind.

 

[Shedrech]

hi @wightdancer
I appreciate what you mean about 'payback time', I felt that way about looking after my parents
I did, though, understand that I couldn't care for my dad alone and had to look after myself too
so I think you're right to consider what might happen if you yourself become ill, and start to put support in place

you mention the cost of care ... any fees will be paid from your wife's funds only ... and if she has little savings and a low income, the Lcal Authority will contribute or even fully fund
these pages from the main AS site give details
https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care

and there's Attendance Allowance, which is not means tested
https://www.gov.uk/attendance-allowance/how-to-claim

then, when AA is in place you can have your wife's Council Tax disregarded so you only pay at single occupant rate

please do contact your LA's Adult Services for an assessment of your wife's care needs ... a care package could include home care visits, befriender visits, respite and aids in your home ... you have the right to a carer's assessment and some members have been granted respite weeks or given a grant to use as they wish

an Admiral Nurse may be able to help you with this, and find local support
https://www.dementiauk.org/get-support/admiral-nursing/

you're being a wonderful husband, your wife is fortunate to have you standing by her

 

[Tester]

At the start of my relationship with my wife in 1964 we slowly got to know each other and eventually became as one.
Now everything is in reverse, and we are slowly coming apart. At the moment, she still sort of knows who I am but is incapable of conversation or expressing feelings other than hunger, thirst or needing the loo etc., She talks but makes no sense and continually picks things up and moves stuff around.

We are joined at the hip as she cannot be left alone and it is illegal to pop out and lock the door with her inside alone at home. For a couple of days a week she went to a day care centre but that was stopped because of health and safety (she undid her seat-belt sometimes when the mini-bus stopped).

I do everything, brush her teeth, wash, laundry, clean, cook, entertain and everything else needed to get through a normal day. Hard to put up with people staring when you are feeding your wife in a restaurant.

We stopped going on holiday 2 years ago when I realised the change of environment was confusing and distressing her.
What I have learnt is that I must not try to stay in my everyday world, I have to join her world at her pace; leave out rational chat and simply communicate with her whenever opportunity arises to connect.

For 55 years my wife has taken great care of me and now it is payback time.

 

[wightdancer]

T

hi @wightdancer
I appreciate what you mean about 'payback time', I felt that way about looking after my parents
I did, though, understand that I couldn't care for my dad alone and had to look after myself too
so I think you're right to consider what might happen if you yourself become ill, and start to put support in place

you mention the cost of care ... any fees will be paid from your wife's funds only ... and if she has little savings and a low income, the Lcal Authority will contribute or even fully fund
these pages from the main AS site give details
https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care

and there's Attendance Allowance, which is not means tested
https://www.gov.uk/attendance-allowance/how-to-claim

then, when AA is in place you can have your wife's Council Tax disregarded so you only pay at single occupant rate

please do contact your LA's Adult Services for an assessment of your wife's care needs ... a care package could include home care visits, befriender visits, respite and aids in your home ... you have the right to a carer's assessment and some members have been granted respite weeks or given a grant to use as they wish

an Admiral Nurse may be able to help you with this, and find local support
https://www.dementiauk.org/get-support/admiral-nursing/

you're being a wonderful husband, your wife is fortunate to have you standing by her

Thank you for your kind words and such useful information and contacts. We have started to get Council Tax rebate and Attendance Allowance but I did not realise we could get respite assistance, that might be necessary later on. Thank you.
Carers coming in for an hour here and there is not much good for me though as it would not be enough time to go anywhere. The day care we had was great but sadly there is nowhere local and if I take and collect her I again would not have much time in between to do anything. All her life, my wife has been a quiet and happy person, not one for strong opinions or arguments. She is still quiet and happy especially now when she is busy 'tidying up' (gathering up things and hiding them around the house). It is like a daily Easter Egg hunt trying to find things.

 

[Justmary]

Wightdancer it's the same for me. My husband never did any tidying but now he spends most of his time moving and hiding things. I've had a lock put on the door of the spare bedroom so I can keep some of my things safe. But you have to laugh when you find the cheese in the dishwasher!