Tips for ‘moving on’

[update2020]

For 15 years I cared for my husband with eoAD. He died one month ago. My question is this: for all that time and longer he was at the centre of my thoughts and of every decision I made. Even when he moved to a nursing home around 2.5 years ago I visited and there were constant worries about his health. How do I decentre him from all that I do? There is now nothing he needs from me but I still find myself structuring each day around something ‘for’ him. Everything I do is an attempt to distract myself. Even when I’m working (I work part time). I could easily live another 20-30 years (I am early 60s), but cannot bear the thought of constantly living with these thoughts. Tips?

 

[Grannie G]

Tips @update2020 ?

Don’t try too hard

What has taken 15 years to embed in your life can’t be cleared in 15 weeks. It might ease in 15 months but please don’t set yourself any targets

When my husband died I felt I drifted for quite a while. I can’t say precisely how long but he died 8 years ago and I still have emotional moments when I’d just love to be able to give him a hug.

I think the more you try to recover the more difficult you will make it for yourself. There is a hole in your life which is impossible to fill but it can grow smaller.

 

[CAL Y]

@update2020 . My condolences for your loss.
My husband died 2 months ago and I was fortunate to be able to look after him at home. With help of course.
It is far too soon for you and me to imagine that we, that our lives will settle into any kind of normality any time soon.
I seem to go from periods of frenzied activity days out with friends etc to sleeping 12 hours at a time.
I believe that our bodies will need quite some time to adjust.
Take things as slowly as you need to.

 

[Canadian Joanne]

My condolences on your loss. It is very, very early for you yet. Please give yourself as much time as you need.

My mother was in care for over 15 years. My husband and I visited regularly. It took months for both of us to stop saying "We'll do that after we go to Mum's". Eventually we did absorb the changes.

 

[Susan11]

My condolences. My Dad died three and half years ago. I always used to ring him at 6pm every evening to have a chat and check everything was ok. Even now I arrange meals so I am free at 6pm and I feel a sort of tug at my heart at 6pm everyday. Sometimes I find myself actually reaching out for the phone . Nowadays I tend to smile and think of it as a happy reminder of a loving father.

 

[StockwellJ]

Hi I have lost unexpectedly my husband on 11th December mid transit in an ambulance on the way to respite care home after suffering a delirium. He suffered for 4 years vascular dementia, failed knee replacement which caused him pain for years, heart and kidney problems but he was passed in the hospital as medically fit and they wanted him to return home after two weeks. The delirium caused him to have manic behaviour, not sleeping for five days which caused me to suffer burnout. Doctor took him to hospital to treat urine infection and delirium. His dementia worsened and he talked in whispers and after the second weekrefused to eat or drink. The phone call from the hospital was totally unexpected as they deemed him fit enough to go to a nursing home. On one hand I am glad he is not in torment and pain any longer. I lost him early this year really because he lost himself inside his head and was no longer my husband of 50 years but a helpless child who could do nothing for himself. His quality of life was zero. Caring for him was exhausting especially when he got incontinent. His passing will leave a big hole in my life and like you do not know where I go from here. Being married so long and suddenly realising I am a widow is hard to take. Its hard at the moment to see a future when I can laugh and smile again. My daughter died 2017 in Bath after eating a pret a manger wrap and I have had to wait all this time for the inquest in September this year. Then my husband develops dementia so I have a double heartache. Also is the guilt that I am glad I will not have to cope with the constant cleaning up of incontinence, sundowning for 3 hours every night, etc and can go out when I want and meet friends. I have put my life on hold to care for him alone with no help and suddenly I have a day that I struggle to fill. Maybe there is no magic bullet. Whats the old saying. Time is a great healer.

 

[Cat27]

I am so very sorry to read your update @StockwellJ. I wish you strength to adjust to this next phase.

 

[StockwellJ]

I am so very sorry to read your update @StockwellJ. I wish you strength to adjust to this next phase.

Thank you.

 

[update2020]

Sorry to hear about your losses @StockwellJ. And thank you everyone else for your kind thoughts. Of course what you all say makes sense. I’m just bothered that this sadness/worry over such a prolonged period of time has just become unshakable and is too deeply ingrained to shift. Need to get busy again but feeling deeply unmotivated.

 

[canary]

One month after the death is really not a long time @update2020 - it is a very short time.
I realise that you are probably talking about the time when your husband was being cared for by you and when he was in a care home, but it is not the same. When they are "gone, but not gone" there is no resolution, just a continuation of the anticipatory grief so everything is put on hold. Now there is a resolution, but you still have to go through the stages of grief which have not been able to be expressed.

Be gentle with yourself, its not going to be resolved in a couple of weeks.

 

[DesperateofDevon]

For 15 years I cared for my husband with eoAD. He died one month ago. My question is this: for all that time and longer he was at the centre of my thoughts and of every decision I made. Even when he moved to a nursing home around 2.5 years ago I visited and there were constant worries about his health. How do I decentre him from all that I do? There is now nothing he needs from me but I still find myself structuring each day around something ‘for’ him. Everything I do is an attempt to distract myself. Even when I’m working (I work part time). I could easily live another 20-30 years (I am early 60s), but cannot bear the thought of constantly living with these thoughts. Tips?

I don’t know is the truthful answer . For me losing my parents & the relief of no longer seeing them in pain/ distress was at first a coping mechanism …. but now I am lost

 

[jennifer1967]

I don’t know is the truthful answer . For me losing my parents & the relief of no longer seeing them in pain/ distress was at first a coping mechanism …. but now I am lost

but you had to spend time fighting for appropriate care for your mum and made yourself ill as a consequence. there is not a target to work towards

 

[update2020]

I think ‘moving on’ was maybe the wrong phrase to use.

But … I do want to do something myself to escape the all-consuming grip of grief and guilt that goes with the job of caring for someone with advanced and challenging dementia and then their final loss. At times it’s felt a bit like living with PTSD. The time since he was sectioned has been especially traumatic. Time might heal but it’s also good to share tips for what we can do.

So I’ve been following the advice from the NHS website - in particular getting outside for daily walks and the weather has blessed me by being dry and sunny.

I also find it helps to talk to people about my husband and his decline and this is hard since I’m alone, but also because other people often think that I shouldn’t talk about such things. That I should truly ‘move on’. What do other people find? Are there other places you find to talk about all this, other than here? Is it good to talk???

 

[Jaded'n'faded]

Interesting about talking to people afterwards and getting the feeling they'd rather you didn't! My (long distance) boyfriend was not very supportive while my mother was ill. He was critical of me in the early stages, saying she absolutely didn't have dementia when I knew she did. When it was eventually confirmed and she moved to a care home he couldn't understand why that didn't 'solve' the problem. When she died three years later and I continued to talk about my experience or my feelings, he would change the subject and once actually said, 'Can't you let it go?' He doesn't deal with feelings/emotions well.

But the point is, I needed to talk about it afterwards. I very much feel like I have PTSD from the caring experience and need to talk about it all. It's one of the only things that helps. And that's why I'm still here 2 years after mum died.

In terms of starting to do things for yourself, my suggestion is gardening. It doesn't have to be anything major, but planting a few herb seeds in a pot on your kitchen windowsill can be surprisingly cheering. It gives you something to look forward to and I think that's an essential part of being happy. Watching a plant grow is very uplifting and for most, easily achieved! Try a sunflower on your balcony or back doorstep!

 

[Moggymad]

My mum died 2 years ago in hospital following pneumonia which accelerated her condition to the end. She was already in the last stage of dementia before this so although the end for her was fairly peaceful it was still a harrowing experience to witness.
During my caring years when I was juggling mum, job, pet care (mine & mums) housework mine & mums plus all other things shopping appointments etc, i used to long for a day when I could wake up & not have to think about what I had to do that day & just have a lazy day pleasing myself. Lots happened in the following years & mum eventually went into a care home. Now I could relax a bit more & have a holiday….. it didn’t happen! I think for me it was the longing to escape that was a way of coping with things.
Once the pressure was off the need to escape disappeared. Instead though I find I now lack the motivation to keep up with tasks. It’s true the saying ‘ if you want something doing ask a busy person’. I still have boxes of mums that I haven’t sorted out yet. Every day I look at them & then shut the door.
I am at peace with mums passing as I always felt I did as much as I could during those years without actually sacrificing my whole life to caring but I do still feel a bit adrift. I lost a bit of me too when mum died. I am now a person who does put off until tomorrow what I should be doing today. I feel guilty about that.
I miss having my mum around now I do have more time but with FIL with alzheimers the memories of the stressful years are very close to mind, even though I have limited involvement, they know i am here to help when needed.
@Jaded'n'faded like you I still visit the forum 2 years after. I continue to feel quite horrified at what some people are having to cope with. In a way it helps to put my experiences into perspective but I really do dread the future if dementia is part of it.

 

[CAL Y]

Hello @update2020 . It is just over 2 weeks since I responded to your post and 11 weeks since my husband died at home with myself and sister and BIL with him at the end.
Im beginning to wonder if I must be an exception to the norm. Although what exactly is normal.?
I really do believe that I did most of my grieving when he was still alive as I’m now feeling very relaxed and accepting of the situation.
In all honesty, I can’t wait for all the Covid restrictions to be lifted as I’m itching to start travelling again.
Just before Christmas I took a domestic flight to Manchester to visit my sister and even stayed in the local airport hotel the night before. I looked on it as a bit of an adventure, heaven knows adventures have been a bit thin on the ground the last couple of years.
I admit that I’m very lucky to have supportive friends who all know exactly what to say and when. I have already become part of the Ladies “What” Lunch ?and have 2 meals out this week. @update2020 , I’m sorry if it seems that I’m making this all about me and believe me I’m not immune to occasional feelings of guilt and wonder how I can put 30 years of happy marriage behind me but at the age of 70, and suffering from 2 debilitating conditions, I’m well aware of the clock ticking.
Sending my best wishes to you. Give yourself some time to grieve but also try to do some things for you. Life will never be the same and we have to look at it as the next chapter. Hugs.

 

[jaymor]

Hi @update2020 ,
My story is as positive as @CAL Y . We had been married 39 years when my husband was diagnosed with Alzheimer’s at the age of 62. All of our married life he has encouraged me and supported me as I hopefully did him. We had friends who were also dealing with dementia, we were introduced to them by his Community Psychiatric Nurse. I also gained friends through DTP, big thanks to them too for their support. My husband was at home with me for seven years followed by four years in a nursing home.

When he died aged 73 my world fell apart as it does for many of us but I wanted to show him I’d be ok. It took time but slowly I chose to accept invites from friends and suggestions of outings and holidays. The first birthday, wedding anniversary, his death we’re all painful but I suddenly realised that all the bad memories of his 11 years with Alzheimers were disappearing and being replaced with all the good memories of the previous 39. He is always with me, I’m not a widow, I am still his wife. There are days when things are not good, sometimes a sad memory pops up and certainly days when I need him to change a light bulb, climb in the attic for me, etc. and he is not there but I just sit them out, no point fighting them, tomorrow is another day.

The sadness of our life not being what we had planned will always be there but it is no longer painful. Things I cannot change I won’t allow to upset me.

So 6 years after his death, with the help of lovely friends and wonderful children life is as good as it could be, perhaps far better than I ever thought it would be when I lost him, just 2 months before our 50 wedding anniversary.

 

[CAL Y]

Hi @update2020 ,
My story is as positive as @CAL Y . We had been married 39 years when my husband was diagnosed with Alzheimer’s at the age of 62. All of our married life he has encouraged me and supported me as I hopefully did him. We had friends who were also dealing with dementia, we were introduced to them by his Community Psychiatric Nurse. I also gained friends through DTP, big thanks to them too for their support. My husband was at home with me for seven years followed by four years in a nursing home.

When he died aged 73 my world fell apart as it does for many of us but I wanted to show him I’d be ok. It took time but slowly I chose to accept invites from friends and suggestions of outings and holidays. The first birthday, wedding anniversary, his death we’re all painful but I suddenly realised that all the bad memories of his 11 years with Alzheimers were disappearing and being replaced with all the good memories of the previous 39. He is always with me, I’m not a widow, I am still his wife. There are days when things are not good, sometimes a sad memory pops up and certainly days when I need him to change a light bulb, climb in the attic for me, etc. and he is not there but I just sit them out, no point fighting them, tomorrow is another day.

The sadness of our life not being what we had planned will always be there but it is no longer painful. Things I cannot change I won’t allow to upset me.

So 6 years after his death, with the help of lovely friends and wonderful children life is as good as it could be, perhaps far better than I ever thought it would be when I lost him, just 2 months before our 50 wedding anniversary.

Hi @update2020 ,
My story is as positive as @CAL Y . We had been married 39 years when my husband was diagnosed with Alzheimer’s at the age of 62. All of our married life he has encouraged me and supported me as I hopefully did him. We had friends who were also dealing with dementia, we were introduced to them by his Community Psychiatric Nurse. I also gained friends through DTP, big thanks to them too for their support. My husband was at home with me for seven years followed by four years in a nursing home.

When he died aged 73 my world fell apart as it does for many of us but I wanted to show him I’d be ok. It took time but slowly I chose to accept invites from friends and suggestions of outings and holidays. The first birthday, wedding anniversary, his death we’re all painful but I suddenly realised that all the bad memories of his 11 years with Alzheimers were disappearing and being replaced with all the good memories of the previous 39. He is always with me, I’m not a widow, I am still his wife. There are days when things are not good, sometimes a sad memory pops up and certainly days when I need him to change a light bulb, climb in the attic for me, etc. and he is not there but I just sit them out, no point fighting them, tomorrow is another day.

The sadness of our life not being what we had planned will always be there but it is no longer painful. Things I cannot change I won’t allow to upset me.

So 6 years after his death, with the help of lovely friends and wonderful children life is as good as it could be, perhaps far better than I ever thought it would be when I lost him, just 2 months before our 50 wedding anniversary.

@jaymor. I’m so glad that I’m not the only one who feels this way. I know it’s a cliche but I know that my husband would want me to move on and I believe that you either go on or go under. We had such a great life together so I want to carry on doing the things we used to do. Like you, I feel that he will be with me.

 

[update2020]

Thanks again. I will be quiet now. I like the idea about gardening. We did, and we didn’t, have a great life together. Alzheimer’s appeared in his life at the end of his 40s when our children were still in their teens. So we had a really fantastic family life (and the children are testimonies to that) but never built a life as an older couple - or if we did it was built around me caring for him (something I miss but can hardly continue). Then there is all the guilt about taking so many life and death decisions on his behalf, the horrible consequences and uncertainty about alternatives. Anyway, onwards and upwards. We are each different yet all the same.

 

[Shedrech]

Hi @update2020 be as noisy as you wish, that's what DTP is here for ... post with whatever is on your mind if it helps, folk here understand