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life after dementia for carers

anne-marie

Registered User
Aug 18, 2012
22
Staffordshire
I recently had to agree to the terribly difficult decision to put my mum in a care home after many years with me at home. The home is excellent and I am told that she is settled but mainly when I don't visit, as she often gets very agitated, when I am there. It was the best decision in the circumstances, I keep telling myself this. My question seems selfish but what now for me? I am in my fifties and it has been her and me for such a long time I feel lost without her, isolated 'and depressed. The world has moved on and left me behind. People keep telling me - gp etc, it is time to restart my life but how and what if I don't want to?
Difficult though it was sometimes I want that life back but know that is impossible.
People seem to think that I should feel free, I don't, if anything I feel bereaved without closure.
 

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
You will feel grief and loss. That is natural and to be expected. Your mum will always be a big part of your life, wherever she is or wherever you are. Take things a step at a time and don't expect too much or too little. Take your time and the sun will break through the clouds. I promise this will happen. Just give it time. There will be glimmers of sunshine which will keep you going.

xxTinaT
 

marionq

Registered User
Apr 24, 2013
6,072
Scotland
One of the men who attended Alz groups with his father has continued to attend even though his father has died. I found this strange at first as I thought he would be glad to move on but I now see that the change has to be gradual for some people after years of caring.

Start doing research as if you were your own carer. Make out a plan for you eg meeting people group, walking group for exercise, class at local college for mental stimulation - whatever floats your boat as they say. Be your own best friend to get yourself back on your feet. Then come back here and tell us how to do it. We'll need the benefit of your advice.
 

nita

Registered User
Dec 30, 2011
1,852
Essex
I am in the same position but my mother has died at home, after being cared for at home (with the help of paid carers) for 4 years.

I feel lost and, being already prone to depression, very low at the moment. I am now probably too old to get a job - aged 64 - and my whole life revolved around looking after my mother. I feel she was my anchor and that has now gone. I feel purposeless.

I don't want to commit to anything like voluntary work too soon as I am afraid I won't be able to keep it up. I am half-thinking of exercise classes, French and photography but without much enthusiasm. Also, possibly getting politically involved.
 

ElizabethAnn

Registered User
Jan 4, 2014
189
North Hampshire
Hello anne-marie,
I completely understand your feelings and the all the advice above is great...

One thing you may consider, when you feel up to it, is to volunteer at a Dementia day care or home? You are certainly well qualified (probably well over qualified!) and it will help boost your confidence and start a new circle of friends.

One of Mum & Dad's part time carers has a Father with Dementia who used to live with her, but is now in a dementia care home. She started off by volunteering at a day care centre and is now a paid carer - providing a couple of hours a day respite for live-in carers (paid and unpaid). She has years of (unpaid) "real" experience...

Just a thought...

best wishes, Elizabeth.
 

LadyA

Registered User
Oct 19, 2009
13,563
Ireland
Can completely understand. You have to grieve this change- it's a loss of your life with your mum. You are in a way bereaved of her constant presence, and faced with a future without her beside you. It's not the final bereavement of death, but nevertheless, you need to grieve for what you've lost.

It's a time for taking things at your own pace. Adjusting gradually. Some days will be bad, and some days will not. Just resolve that each day you will do something nice and good for yourself.
You too, Nita.


Sent from my Moto G Play using Talking Point mobile app
 

anne-marie

Registered User
Aug 18, 2012
22
Staffordshire
understandinh

I am in the same position but my mother has died at home, after being cared for at home (with the help of paid carers) for 4 years.

I feel lost and, being already prone to depression, very low at the moment. I am now probably too old to get a job - aged 64 - and my whole life revolved around looking after my mother. I feel she was my anchor and that has now gone. I feel purposeless.

I don't want to commit to anything like voluntary work too soon as I am afraid I won't be able to keep it up. I am half-thinking of exercise classes, French and photography but without much enthusiasm. Also, possibly getting politically involved.
I completely empathise with your feelings, sorry would have responded before but have been unwell - anxiety and depression do take physical forms at times, as I am sure you have experienced.
It has been about eight weeks now since I put my mum into care and I miss her everyday, true I can visit but is it not the same. Mostly she doesn't know me, is agitated and very confused and disorientated. The small comfort that I have is that I watched some videos on my tablet last night taken about a year ago and she is like a different person. The dementia certainly took a grip on her this last yeat, praps I just didn't want to see it. I know that I have received some sound good advice on here but I too am not ready yet to move on. Doing voluntary work would feel like a betrayal of her i.e. I can look after others but I gave up on her. I too must look for 'a proper job ' now (how I LOATHE that comment !) but my skill set is not what it used to be.
Without our little dog to look after I really would have nothing to get up for in the morning, as it is evenings are the worst and I often long for bedtime.
Despite all this I do have a glimmer to cling on to that this will change and I know that the effort must come from my self mainly, I just have to find and hold onto the strength to do it.
Apologies for being so terribly indulgent. Please believe me when I say that I do have some idea what you are feeling and have thought of you often since your post.
Wishing you well and good luck with the classes - well done.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,050
Yorkshire
hi anne-marie
and nita

dad moved into his care home a couple of years ago now, and I had given up work to help care for him at home before that
it took me some time to settle myself after his move; I was looking after his house for a while, as we didn't live together, and I found the daily walks over to his house (to open curtains in the morning, titivate, and close curtains at night) really helped as I got some exercise and some fresh air, and it top-and-tailed my day - so maybe a short circular walk morning and evening might help
I also gradually began to sort out my own house, as I'd been keeping dad's neat and tidy at the expense of my own - and got myself out into my garden to slowly sort it out (very slowly - still a lot to do; but the garden will stay there so there's no need to rush or put myself under pressure)
I did take on some voluntary work, not anything to do with caring (I could do anything for my own dad but I'm just not a people person enough to help care for someone else) - I took it on for precisely the opposite reason you mention - I felt that as it was voluntary, I was more in control and could miss a session if I had to (giving notice, of course) - so I collected for Marie Curie which is just a few hours maybe 4-5 times a year - and I went to my family history society once a week to help for one session = something I enjoy and a lovely safe way to meet a small group of people in a comfortable environment (it would also be a good way to re-skill as the tasks I undertake are those someone in work needs) - I also deliberately contacted a couple of family members and friends I hadn't seen much of and arranged to see them, maybe only once a month, but it got me out and about, and reconnected
that gave me the confidence and impetus to take some short breaks on my own - I hadn't had a holiday without dad for years - I've loved revisiting some childhood haunts, just for a few days, in an inexpensive B&B
I started small, because I know I'm not good at having to do something everyday - 2 years later my life is still pretty quiet but very much changed - and I visit dad 3-4 times a week so he's not at all forgotten
best wishes
 

nita

Registered User
Dec 30, 2011
1,852
Essex
Thank you both for your thoughts and to LadyA too. I didn't mean to hijack Anne-Marie's thread.

I would say though that it's different when the parent finally "goes" so perhaps not quite the same as them being in a care home or, in my mother's case, still living with me. It's knowing you won't ever see them again.

I'm not saying that it doesn't eventually come with a kind of acceptance and a feeling that they are now at peace but there is also guilt. People tell me I did a lot for my mother but I wish I had shown her more explicitly that I cared about her. Quite often I felt too tired and worn down with it all and I constantly thought of how she used to be and how she wasn't the same person any more. Yet, looking back, she still had the same kindness and her essential personality was still there. I am afraid I felt more pity and anxiety for her than other emotions as time went on.

So I would say to make the most of them still being there while they are, in whatever state, and try to please them as much as you can, just little things, and tell them you care for them. (This sounding a bit like a soppy song!).I know when I did say how much my mother meant to me she was grateful. We hadn't been a very demonstrative family before, you see.

I have had better days since I last wrote. Spring is poignant, of course, because she's not here but I console myself with the fact that had been confined to bed and she couldn't go out for 3 years and I just used to tell her what the weather was like or turn her bed to look out at the birds. She slept most of the time. I suppose I did a lot of grieving about the limitations of her life and what was happening 2 or 3 years ago.

I too, like Shedrech, go to a family history meeting. I must take it up again. There's so much you put on hold when you're caring for someone. Like you my place is a mess as it got neglected over 6 years! I am just getting my garden sorted out with the help of a good gardener. It is lovely to see things sprouting up.

I haven't sorted out much of my mother's old things except for giving away the mobility aids and all the accoutrements that go with incontinence and disability, etc. but I have started to clear my own wardrobe! I gave a lot to a charity shop today. I was pleased to give it to them because they are a charity that supports people with early onset Alzheimer's.