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Tips for ‘moving on’

jaymor

Volunteer Moderator
Jul 14, 2006
14,836
0
England
That’s what the forum is for @update2020, it’s healthy to let off steam and not let anything build up. There are plenty of us around, keep posting when you need to.
 

Kas445

New member
Dec 2, 2017
5
0
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.
Thank you for your positive post. I am still in the early stages as my husband died in December. However, I feel hope and encouragement from reading your story. I have a long way to go, but I will remember your words and know I can move forward.
 

Mydarlingdaughter

Registered User
Oct 25, 2019
193
0
North East England UK
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???
It’s good to talk as long as you find it helpful.
if other people suggest you move on and not talk about it, just keep quiet around them.
the Alzheimer’s helpline is a good place to talk … also here of course
personlly I found members of my faith community very good listeners too.
some family members were understanding as they had been through similar situations.
its really early days yet and be prepared for the long haul. It will take time.
 

update2020

Registered User
Jan 2, 2020
164
0
It’s good to talk as long as you find it helpful.
if other people suggest you move on and not talk about it, just keep quiet around them.
the Alzheimer’s helpline is a good place to talk … also here of course
personlly I found members of my faith community very good listeners too.
some family members were understanding as they had been through similar situations.
its really early days yet and be prepared for the long haul. It will take time.
Thank you. I visited his grave today. All the flowers in the wreath have long died but the mistletoe seems to be growing. And then I remembered that it was St Valentine’s Day.
 

update2020

Registered User
Jan 2, 2020
164
0
Three and a half months on, I no longer fill my time doing things ‘for’ him. I went away with friends/family and I’ve booked a holiday for the end of the year. I’m back at work of course.

There are still constant flash backs of both the ups but especially the downs. The downs were pretty dreadful. There is a growing sense of guilt that I didn’t look after him well enough but there is nothing I can do about that now. I constantly remind myself that there are many many other tragedies in the world (not hard) but I have a feeling that this growing kernel of guilt is here to stay. Just offloading. No need to reply.
 

canary

Registered User
Feb 25, 2014
18,148
0
South coast
The sense of guilt is part of grieving. Its not over in three and a half months by a long shot, but it does lessen with time.
Im glad you are doing things like work and booking holidays - its a start on the road back
xx
 

update2020

Registered User
Jan 2, 2020
164
0
The sense of guilt is part of grieving. Its not over in three and a half months by a long shot, but it does lessen with time.
Im glad you are doing things like work and booking holidays - its a start on the road back
xx
Thank you ((x)))
 

Shedrech

Volunteer Moderator
Dec 15, 2012
11,896
0
Yorkshire
I changed that word guilt to regret @update2020 reminding myself that guilt is for when you've done something wrong and I didn't believe I had ... regret fitted for a while and gradually I find I have fewer regrets as I see a whole life in perspective ... I cared for and about, my one real regret is that I didn't say often enough how much I cared but even with that, I know my mum and my dad knew what I'm like and understood
Enjoy the life you are building ... I believe doing that is honouring and respecting the life you shared together
 

Whisperer

Registered User
Mar 27, 2017
318
0
Southern England
Dear @update2020

Please no guilt feelings. We are all thrown into the caring role with no real training, guidance or support. We largely stumble through as best we can. We are mostly untrained medically.

Remember you were part of the solution not the problem. No doubt as we all look back there are things we could have done better, lessons we could have learned sooner, things let go off quicker, etc. That said we all do our best with the hand we are dealt by fate, with the skills we have, etc. Your loved one with Dementia was always better off with you in the frame than without you.

Please, please cut yourself some slack. Ex carers can be harsh judges of themselves, remembering small mistakes. Think of the bigger picture, what you did achieve in your role caring for your loved one. I wish you well on your new chapter in your journey through life. The caring role in the Dementia field can only end badly, varying in degree from case to case. Just being on the caring road was a achievement you should take satusfaction in, at the very least, in future years. My very best wishes for them future years.
 

SamOakes14

Registered User
Mar 17, 2022
13
0
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?
It's hard to almost re-structure your entire life after losing someone who you deeply love and have cared for for so long.

My grandmother passed away from dementia and my mum and auntie cared for her for many years, especially towards the end, being with her almost all the time. I took care of her as well but not nearly as enough as they did.

From what I saw of their lives after losing their mum, they didn't move on straight away. They struggled to adjust to their life without having to care for their mum and focus all their thoughts on her every day. Some things that they did were:

1. Taking the time to look after themselves - starting small but scheduling in time to do things that they wanted to do. So if that was to go and see a friend, go on a weekend away somewhere, go for a meal with family. It was about scheduling in time for things that they wanted to do
2. My mum would write down in a diary her feelings, acting almost as a therapy guide. It helped her to release her feelings about the situation and deal with moving on as well

It's fine to do thing and think about your husband and thinking about doing something for her, you just have to remind yourself each day that it is for you. Of course, you will still love him and treasure him, but it's okay to start saying that YOU want to do this. That's the most important thing to remember.

It's about you finding your own way, even if that is finding a new hobby to get involved with. My auntie actually took up cooking and baking (even though she did this before, it was primarily for her mum). She loved to try new recipes and experiment and now she loves to cook.

I'm so sorry for your loss and I hope you are doing better. Just remember that it will take time, it's just slowly doing things for yourself and reminding yourself that this is what you want to do today, this is what you have planned, this is how you feel etc. xx
 

update2020

Registered User
Jan 2, 2020
164
0
It's hard to almost re-structure your entire life after losing someone who you deeply love and have cared for for so long.

My grandmother passed away from dementia and my mum and auntie cared for her for many years, especially towards the end, being with her almost all the time. I took care of her as well but not nearly as enough as they did.

From what I saw of their lives after losing their mum, they didn't move on straight away. They struggled to adjust to their life without having to care for their mum and focus all their thoughts on her every day. Some things that they did were:

1. Taking the time to look after themselves - starting small but scheduling in time to do things that they wanted to do. So if that was to go and see a friend, go on a weekend away somewhere, go for a meal with family. It was about scheduling in time for things that they wanted to do
2. My mum would write down in a diary her feelings, acting almost as a therapy guide. It helped her to release her feelings about the situation and deal with moving on as well

It's fine to do thing and think about your husband and thinking about doing something for her, you just have to remind yourself each day that it is for you. Of course, you will still love him and treasure him, but it's okay to start saying that YOU want to do this. That's the most important thing to remember.

It's about you finding your own way, even if that is finding a new hobby to get involved with. My auntie actually took up cooking and baking (even though she did this before, it was primarily for her mum). She loved to try new recipes and experiment and now she loves to cook.

I'm so sorry for your loss and I hope you are doing better. Just remember that it will take time, it's just slowly doing things for yourself and reminding yourself that this is what you want to do today, this is what you have planned, this is how you feel etc. xx
Oh that’s really kind. Thank you. Today I am spending all day reading. Something I’ve not been able to do for years.
 

SamOakes14

Registered User
Mar 17, 2022
13
0
Oh that’s really kind. Thank you. Today I am spending all day reading. Something I’ve not been able to do for years.
That's good! Taking time for yourself is always important and getting back to an old hobby is always a good idea! I hope you are doing okay today!
 

update2020

Registered User
Jan 2, 2020
164
0
That's good! Taking time for yourself is always important and getting back to an old hobby is always a good idea! I hope you are doing okay today!
Thanks for checking in. Another slow day today. Off to have so few demands on my time. But good too.
 

AliceA

Registered User
May 27, 2016
2,910
0
In three days I shall be starting the third year without my soulmate of 64 years.
I still get a trigger at unexpected times;
sometimes these still bring the pain of loss, I miss the Physicality, the hug, the kiss on the top of my head as he passed the back of the chair.
Sometimes the tears are full of smiles as I remember.
Sometimes it is laughter as I remember a joke or the sweet fun.

As some else said I also feel I am still his wife, just as one would if life had taken him on a trip beyond sight. I just continue to do many things on behalf the two of us, although in my name.
I still have family concerns that he would be concerned about too.
I support things he would have supported.

That said I am alone! It has taken a while to adjust,
It took a long time to stop buying things he liked as I realised I only bought because he enjoyed these not me.
I lost interest in new clothes, I who thought I bought for me missed the interest or the sparkle in the eye. I have now bought a few things again.

Gradually but slowly there is a change, for anyone who has lost I recommend a poem by John O'Donohue called For Grief, he wrote this for his mother.
It is easily found n the Webb. A real treat is his book To bless the space between us.
The poem speaks of how fragile we become, how on a happy day we can be thrown onto the black tide of loss. He calls grief, work, I have found it surely is.
Near the end he talks about entering into the hearth in your soul where your loved one has awaited your return.

I am sorting out some papers, I found a poem I wrote seven days after primal grief that had made me sound like a wounded animal. It was full of gratitude for what we had, the fact it was I and not him left to face whatever. I surprised myself when I found this. Yet at the worst times, it is gratitude that has been a balm, not a cure but has eased the sharp edges and my, they can be sharp!

What has certainly helped me out is that I speak to him aloud as if he is there but not in the range of sight. I tell him the good and the bad, I remark on the beautiful sky, the small joys we shared.
Sometimes I get a thought of what he would have said, occasionally it surprises me but eventually makes sense. Sometimes I just laugh at outdated words I have not heard since young.

Yet this is not a Miss Haversham life!
I was invited to a Zoom conference a few weeks after April 2020, it was about end of life care, I spoke to doctors. My passion came over, my remarks were in the summing up.
Lockdowns were a mixed blessing, they gave me time but denied the normal support from taking up activities or doing normal things to meet others. I lacked support so was thrown back on my own resilience. I took to Zoom discussions.

The age of loss must be a factor, I dislike the idea of moving on, simply because I know the people we love become part of us, so what ever we do we take stuff with us.
Good and bad, like steel we need fire and water.
Izzy once posted a very good video about grief, our new life grows around the grief.

I am pretty old, but if I were ten, twenty years or more younger I know my life would be different, my needs would be different some harder and some easier.
each of us has to work ar our own pace and capability no ones else's,
One thing we will all find there is plenty of well meaning but useless advice out there. A friend and often have had a good laugh about it.
Let's just be kind to ourselves so we can be kind to others. People just do not know what to say. Just as with dementia some want an easy answer for their own comfort.

Gradually, I am picking up a new life, I am doing things differently, my own health slows me but that aside I have achieved a lot. Caring is a good training ground!
What helps me may not help others.
 
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CAL Y

Registered User
Jul 17, 2021
284
0
Hello @AliceA . Thank you for such an eloquent post. It has lifted my heart after a very sad day. The weekends are the worse times.
I am only five months into this new single life so very early days.

This is the second time I have been widowed so I do know that there are no shortcuts, we just have to make the most of the good days then roll with the punches on the bad days.
I will take a look at the poem you have suggested.

Kind regards to you. C.
 

nita

Registered User
Dec 30, 2011
2,380
0
Essex
I found the poem by Maya Angelou "When Great Trees Fall" spoke to me. It was read out in an episode of "Shetland" - I hadn't heard it before. This is the section they read:-

And when great souls die,
after a period peace blooms,
slowly and always
irregularly. Spaces fill
with a kind of
soothing electric vibration.
Our senses, restored, never
to be the same, whisper to us.
They existed. They existed.
We can be. Be and be
better. For they existed.
 

AliceA

Registered User
May 27, 2016
2,910
0
Hello @AliceA . Thank you for such an eloquent post. It has lifted my heart after a very sad day. The weekends are the worse times.
I am only five months into this new single life so very early days.

This is the second time I have been widowed so I do know that there are no shortcuts, we just have to make the most of the good days then roll with the punches on the bad days.
I will take a look at the poem you have suggested.

Kind regards to you. C.
How tough for you, you are so right. Yes, weekends and special days too when it can really hit hard. Sometimes it seems we are the new lepers!
I am sure loss is different every time, we can never really prepare. Your words are so true. Kindest regards back, A x
 

AliceA

Registered User
May 27, 2016
2,910
0
I found the poem by Maya Angelou "When Great Trees Fall" spoke to me. It was read out in an episode of "Shetland" - I hadn't heard it before. This is the section they read:-

And when great souls die,
after a period peace blooms,
slowly and always
irregularly. Spaces fill
with a kind of
soothing electric vibration.
Our senses, restored, never
to be the same, whisper to us.
They existed. They existed.
We can be. Be and be
better. For they existed.