Accepting a new way of life...

[Linton]

Hi.. I have now accepted my O H .. Who has Lewy body dementia.. And I have a completely different way of life now..and the only way to survive is to accept it and move forward... Because of stressful hallucinations we can no longer spend our evenings in the sitting room... The bedroom makes him more at ease so bed at 6...I manage to watch TV and bed at ten.. but have to stay with him.. up and dressed at 3..and catch up with sleep when we can.. Meals are different as his appetite is not what it was.. Going out is difficult as mobility is poor... All sounds grim... but.. we have a bond stronger than ever.. and now I accepted how it is.. and try to find some positive aspects.. I feel at least I can.. at the moment.. Handle what comes... Love to all who struggle xxxxxxx
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[Dimpsy]

The cruelty of dementia, it twists and distorts life, but the resilience and power to adapt by those affected is incredible and it's so uplifting to read how in the face of adversity, you and your OH are looking to the future with a stronger bond then ever.
Sending best wishes and peace to you both.
xx

 

[Linton]

The cruelty of dementia, it twists and distorts life, but the resilience and power to adapt by those affected is incredible and it's so uplifting to read how in the face of adversity, you and your OH are looking to the future with a stronger bond then ever.
Sending best wishes and peace to you both.
xx

 

[Linton]

Thanks for your good wishes Dimpsy.. It helps a great deal to have support from others.. Xxxxx

 

[Bikerbeth]

What a strong incredible person you are. The ability to find some positive aspects and move forward is remarkable. I hope you are proud of yourself as I really think you should be. All the best

 

[Betenoir71]

Acceptance is so hard, it can feel so unfair. It seems a such a small thing in the grand scheme of things (considering that we are dealing with double incontinence, severe mobility problems etc) but I felt so sad tonight, trying to watch TV with my mum, we have enjoyed watching every series of I’m a Celebrity together, and now she can’t understand it or concentrate on it. There is so little enjoyment in her life, or mine. Have just seen she is wet through, she must have been so agitated and unsettled today because of yet another urine infection (a matter I have been fighting to address with the GP for nearly a year now) - SS are dragging their heels and offering the wrong type of support (because that’s all they have to give). I am due to go back to work after 2weeks off with flu and am terrified to leave her.
I am an experienced NHS professional working with people with dementia (ironic, eh?) but I am struggling to accept our situation, I have so much admiration for you Linton, as you sound like you are achieving a calm, supportive environment for your loved one, I wish I could do better.

 

[Linton]

I utterly agree..... If you have the energy.. Xxxxxx

 

[AliceA]

You have found the key, Linton, hard though it is at times anything other than that is like crying for the moon I find.
Our whole present life and our once private home are immersed in the changing needs of this cuckoo in our nest.
I sleep in a recliner, and snatch sleep when I can. Like a young parent!
I too find a changing but special bond holds me. The absolute trust of someone who needs help so much.
We have to float with the down stream rather than struggle against up stream getting nowhere fast. It is hard is so hard there are so many rocks to avoid.

 

[Grannie G]

Acceptance is wonderful and a gift if it can be embraced.

You have found a solution to making the best of what life has given you and your OH @Linton. It`s not the life you would have chosen, it`s the life you`ve been given and your strength and love have enabled you to accept it.

Respect.

 

[White Rose]

Serenity and acceptance makes me think of hippies floating around with drug induced peaceful smiles on their faces - perhaps we are the ones who need to drugs rather than our PWDs

 

[Linton]

Hi it helps so much on this journey to feel others are going through the same thing and finding acceptance is the only way... Couldn't do it if I felt all alone.. Family support and all the advice from this forum makes all the difference... Many thanks to you all xxxxxxxxxxx

 

[Lawson58]

Acceptance? Hmmmmm.

I don't think I have accepted anything about how my life changed years ago.

Resignation? Yes, reluctantly and not without a monstrous battle with myself.

I think people who can accept this life with dementia are absolute saints.

 

[jenniferjean]

I think people who can accept this life with dementia are absolute saints.

Well I have a new motto "I ain't a saint".
Now that I have the incontinence to deal with along with the sexual hallucinations and everything else that this disease is throwing at me, I have decided to worry less with the problem of finding entertainment for my husband. I am his carer in that I cook, clean and keep him safe. I am not an entertainer.

 

[kindred]

A

Well I have a new motto "I ain't a saint".
Now that I have the incontinence to deal with along with the sexual hallucinations and everything else that this disease is throwing at me, I have decided to worry less with the problem of finding entertainment for my husband. I am his carer in that I cook, clean and keep him safe. I am not an entertainer.

Absolutely. I think I endured it rather than accepted it or attained sainthood.
warmest, Kindred.

 

[Linton]

Hi.. I'm certainly no Saint.. and have had times of despair.. Everyone finds different ways to cope... For me a turning point was when I accepted the situation.. Stopped thinking how it used to be and what we thought the future would be.. and tried to find things here and now to make it as good as we could.. For us both.. There may be times coming when we fail... But I'm sure.. For us.. its the best way.. Love to all xxx

 

[Justmary]

I think that at the beginning of this journey I did try to accept. But now, as above, it's a case of reluctant resignation, not an entertainer, and endurance. It may not be wonderful, but I am keeping him warm, well fed and safe, and it is preferable to running down the street screaming. ( which is what I feel like doing sometimes )

 

[Linton]

Hi just Mary... So sorry you feel like that... Who knows further on in this journey I may be joining you 'running down the road screaming'... For now a day at a time... I send you my love xxx

 

[Vitesse]

Hi just Mary... So sorry you feel like that... Who knows further on in this journey I may be joining you 'running down the road screaming'... For now a day at a time... I send you my love xxx

I envy your resilience. When things are reasonably calm here, perhaps for a few days, I think that I can accept the situation as it is. For those few days my husband is quiet, pleasant and loving, and I say to myself that I can do this. Then it all starts again, the suspicion and the absolute determination not to go along with anything I suggest, and my head just blows, and I am in tears, hating every minute of my life and wishing it would all end.
I wish I could face life like you do.

 

[Linton]

It's not always easy.. Vitesse... I have had days just like the ones you describe.. My OH s hallucinations always include me doing something to antagonise our 'visitor's'.. I used to get upset.. Now I try to be a bit detached from it.. I know its the dementia and he can't help it... And it must be hard for him to understand... I think you're doing the best you can...and how ever low you feel you're not alone... My heart goes out to you xxxxxxx