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End of Dementia journey, start of? - Page 13 - Carers UK Forum

End of Dementia journey, start of?

For anyone who is bereaved or no longer providing care.
171 posts
I doubt you could ever upset me!! I value friends too much for a well meaning thought like yours to bother me.
I think its a fabulous idea for anyone who would take comfort from such things. My hairdresser lost her son 4months ago, only 28, so cruel. She is having teddies made up from some of his clothes. Each member of the family will have one. Poignant.
I can easily get to the cemetery, my sister and myself go although not regularly. DD goes sometimes. Hubby definitely wouldn't want us fretting about a headstone etc, and it was his wish for cremation. Sadly he never expressed a wish as to his ashes.
I don't know if this suggestion any use to you but airing it just in case. May not be the right time so apologies in advance as not my intention to upset you. 1st of all congratulations on birth of your grandchild. Still waiting on our 1st one.

Hubby been in the nursing home almost 20 months now, still as hard today as it was in the beginning. However, he is receiving excellent care and apart from the home, he has 1-1 staff from 8am till midnight. Your own journey helped me so much.

Anyways, although my daughter not been blessed with children as yet, she bought me a "From me to you" book. One with grandad on. She asked me to fill it in for whenever she does have children and it is all about hubbys life. I am only half way through and albeit there have been tears, there has been some of joy and laughter too. It is about his life, add photos, little personal stories etc. A keepsake for all time. I have one she gave me with 'Nana' on too but not started on that one as yet.

Seems ironic that having not been on the forum for some time as life took over, that it is one of your posts that I find myself replying to 1st. I can empathise with all your emotions.

x x
Thank you for that suggestion. The baby is actually my great Grandaughter!! My eldest Grandaughter's Ist baby. I do believe she will tell stories of her beloved grandad. He always comes into conversations one way or another.
I certainly feel your pain. Hubby was in the nursing home from March 2016 and hadn't been home since November 2015.
I really miss him. But he was so so poorly in the end,its almost selfish of me to wish him back with me.
You know that your husband is in the best place for him, the needs and wants are different things.
I do hope you are managing some life for yourself because not doing so won't make any difference to the sad cruel situation.
So lovely to here from you. Welcome back.xx
A week ago today DDs and myself sorted hubbys ashes. A very sad time. Cant believe it was a week ago already. 7months since he passed. Im not having so many flashbacks now, although they do rear up unexpectedly.
Pet66 wrote:
Sat Dec 07, 2019 10:56 pm

I really miss him.
I know exactly what you mean, altho S still here with us. It is the personal memories of time together, the in jokes between us that no one not even our daughters would realise. The laughter and someone to talk to about what is going on in our daily lives, someone we shared everything with. Having been with hubby since we were 15 yrs old, been through so much, he was my rock. I miss the hugs, kisses etc, just the touch from his hand. The twinkle in his eyes went a long time ago. As well as being man and wife he was, and still is my best friend, just the sharing is all one way now, from me to him.

The fact he is now under end of life care at 59 yrs old with this horrendous disease is unreal at times.

x x
Pet66 wrote:
Sun Dec 08, 2019 2:16 pm
A week ago today DDs and myself sorted hubbys ashes. A very sad time. Cant believe it was a week ago already. 7months since he passed. Im not having so many flashbacks now, although they do rear up unexpectedly.
I pray that in time you will keep more good memories close to your heart. That they will bring you comfort. No matter how hard it got, you shared a full lifetime before this disease took hold. That is whom you both were, yesterday, today and tomorrow - a couple always and forever

Grief feeling weighing heavily at the moment. Not every hour of the day but it washes over me.
Things I would have been telling hubby. Good and not so good....
My friend from the home has now lost her dad. Am going to the funeral with another friend I made at the home. I was very fond of her dad.
My other friend (neighbour over the road)has been diagnosed with breast cancer. She's in hospital today for more treatment.
She has a positive attitude regarding it all. Hope it remains.
Other friend has broken her arm.
Hubby used to suddenly plonk a kiss on my cheek. His way of letting me know he was there for me. Sigh!
Had an awful night. Guilt washed over me big time. The nursing home sadly went downhill over the last few months of hubby's life. Managers weren't staying, causing unrest, the last one, who never met hubby as he was hospitalised for the last month, left before her 1st six monthly probationary. I felt I hadn't done enough, as still kept my visiting to every other day. I know my family visited in between. However I feel I became complacent. Should I have found somewhere else for him? Knowing that it would have caused him even more confusion. I haven't to this day found out why the nurses wouldn't have hubby back from the hospital, wouldn't take the free training offered for his bowel problems. When the hospital asked, the answer was always, just no no no. I never found out who was in charge of the nurses, as the management said they could not make the nurses do anything. I contacted the CQC who replied to me speedily. My friend contacted them too with concerns and they have been to the home.
Will not get answers now, and it's too late anyway. Always felt I had done my very best for hubby, stayed strong for him. Now, the doubts are creeping in.
Is this a stage of bereavement, feeling my best just wasn't good enough?
Oh yes, guilt goes with bereavement. Every story I hear, whether from an ex-carer (which I am as well) or from someone whose loved one died suddenly with no warning, includes feelings of guilt. Gradually they pass, but they can return out of the blue.

From the outside, you did more than I feel I could have done, had I been in your shoes. You say that you have always felt that you did your utmost and I do believe and hope for you that that knowledge will return, that this is another stage in the unwanted journey through grief. You were not responsible for the actions and failings of others and you showed your love for your husband as you did everything you could to improve things and to eke out your strength so you could carry on doing so.

I won’t tell you my guilt feelings here, but I have needed repeated reassurances that I did what my husband would have wanted, in the best way I could.
Pet, sorry you had a bad night.

I agree with Dusty, guilt is a theme/stage in grief.

You did everything you could for hubby, visiting him, (even visiting him less often - to give yourself a rest, benefitted him, as it kept you strong enough to fight for him,) attending meetings, emailing and phoning, taking him treats, learning how best to respond to his confabulations, cherishing the good visits, sourcing his comfy chair and socks, ensuring he (and others!) had a ready supply of his toiletries. He would never have coped with moving in the last few months and up to that point you had been mainly happy with his care, he passed in hospital well cared for with you at his side.

What would you say, if you read the above about another carer? You would say they had done everything they could, wouldn't you?!


171 posts