There is death - and then there is a Dementia death

[chrisdee]

I have been very moved by most of the posts on here - particularly from those like me who have lost a loved one, lets say within the last year or so. Mum passed away in March and like so many, its a case of one step forward then another back. Hard to analyse, but as I see it when Dad passed away 2.5 years ago it was terribly sad. But he had lived a full life and he passed away relatively quickly after a short illness and pneumonia, the old man's friend. No wonder people say this when contrasted with Mum, a not untypical example.
She had very good physical health for most of her life, until her late 80's really. Now of course we know that is not necessarily a good thing, especially when AD comes along to fill the gap and of course expand on Dad's passing. She was doing quite well until a fall and hip operation - then went downhill rapidly. I can now see that really this was a blessing in disguise. It was the long period of being at home, watching the deterioration, witnessing frustration and agitation. The legal procedures, the difficult visits to the doctor's, battles with mental health services on her behalf and finding suitable care, persuading, visiting, feeling low, tears, frustration, hours of driving, wondering if it all will ever end or would I break down? battling to the hospital last winter. Witnessing the final deterioration and seeing her disappear bit by bit. In its various guises, we learn that this is every carers experience, give or take. No wonder its so hard to move on, rationalise, process, accept. Sadly, a dementia death is the most difficult of all, and we need to give ourselves huge amounts of time as those final moments have a habit of lodging themselves in our heads.

 

[Spamar]

Chrisdee, an idea. Get some photos of happier times and out them all around. That way you will remember the happy times and the bad times will fade. Easy to do and worth a try ( working for me!).

 

[chrisdee]

Chrisdee, an idea. Get some photos of happier times and out them all around. That way you will remember the happy times and the bad times will fade. Easy to do and worth a try ( working for me!).

Yes, you are right Spamar, thank you.

 

[Sasky]

Chrisdee. Having experienced the same as you ie hip fracture, surgery and then rapid decline. I can totally empathise with you. I lost my darling Mum last November and those last few weeks are constantly on my mind too. I miss my Mum more than words can say

 

[stanleypj]

Perhaps it's important to remember that, though it is absolutely true that for many PWD and their carers the death process is extremely difficult, there are other very difficult and horrible ways to die. It's likely there will be members who read this thread and know this from their own experience.

It's also true that some PWD die peacefully.

 

[count2ten]

Oh Chrisdee, Sasky, you are telling my story, just lost my mum - can't believe it's 4 weeks ago today , I don;t want the time to go by too quickly because it means I will be having to let go a bit more and I just can;t believe how much I miss her, miss doing something or being somewhere with her. How on earth do I fill up this huge hole that I'm left with? We had the same sort of experience, it was a stroke about 10 years ago that probably started the slow decline, then the memory loss and confusion with all the frustrations that went with that , then all the hospital appointments and the admissions with recurrent infections and BP problems, ulcerated legs and broken toe (thanks to another hospital stay), which severely reduced her mobility, then the dreaded hip fracture, that's when I had to give up work so I could help her get to the toilet and maintain her dignity because otherwise she would be expected to sit in her own wee and poo until the agency staff eventually turned up - if at all. Then she started having hallucinations and personality changes, that we could never keep up with. I was constantly badgering the GP and mental health services for some support and treatment, usually just got fobbed off with "it's the dementia" even though I knew it wasn't just that. Then the sepsis that nearly finished her off, and the undiagnosed pneumonia that she was discharged too early with, finally blue lighted back into hospital with a severe stroke and 9 weeks later watching her give up the fight, but thankfully back among lovely familiar care staff.

Ive been trying not to cry too much today, I'm sure my family thinks I should be pulling myself together by now, that this is a huge relief and that now at last I can get on with my life and I don;t have to worry anymore - but all I feel at the moment is very tired and numb. Sorry to be going on for so long but this is the only place where I know everyone understands that this is like - I am so thankful for this site where I know that no one has to respond or even read this, but at least I can get it out of my head for a while. Big group hugs to everyone xxxx

 

[fredsnail]

count2ten big hugs to you too.

There is no magic wand, no fixed time to get over it or pull yourself together.

Caring for a person with dementia takes an inordinate amount of time, from paperwork, to appointments, to visiting if in a care home. It truely is unappreciated by those not involved how much of your life it takes over - even when you have time to yourself (very rare I know) the person is always in the back of your mind, you're waiting for a phone call to say you need to get home/hospital etc.

Then suddenly it stops and you have a gaping void that is a continual reminder of the person you lost - you feel as if you should be doing something for them even though they are not there.

Life goes on for everyone - but it's up to you when you feel recovered and when you are ready to move on to the next part of your life.

 

[count2ten]

count2ten big hugs to you too.

There is no magic wand, no fixed time to get over it or pull yourself together.

Caring for a person with dementia takes an inordinate amount of time, from paperwork, to appointments, to visiting if in a care home. It truely is unappreciated by those not involved how much of your life it takes over - even when you have time to yourself (very rare I know) the person is always in the back of your mind, you're waiting for a phone call to say you need to get home/hospital etc.

Then suddenly it stops and you have a gaping void that is a continual reminder of the person you lost - you feel as if you should be doing something for them even though they are not there.

Life goes on for everyone - but it's up to you when you feel recovered and when you are ready to move on to the next part of your life.

Thank you so much Fredsnail, you summed it up exactly how it is. It was the uncertainty of every day, not knowing what to expect , not being able to relax, the constant worry if she was ok and happy or agitated and distressed. I have no idea if I will ever feel "normal" again, it's like being lost at sea and not knowing where you're going to end up. At the moment I'm having trouble finding words and being able to express myself on the phone or talk to people in shops etc. I'm not sleeping and then can't get up in the morning, everything is such an effort. There was a family get together at the weekend but I just felt like an onlooker and so tired the next day. I never imagined it would affect me like this and that I would miss her so so much. I am trying to sort her place out but keep finding things that start me off again so I just leave it for a few days, but can't bring myself to clear anything away, I keep expecting her to walk back through the door and be my mum again. Age doesn't make it any easier does it.

 

[fredsnail]

Do things have to be sorted now, can you leave it a few weeks until you feel stronger?

You are grieving, your body has kept going through all the stresses over the years and is now looking for you to take it easier and recover your strength.

Maybe set one or two jobs to deal with each day and just take baby steps.

Age makes no difference - Grandad was 102 when he passed last November and I miss him dreadfully and still think when I get up some days that I need to visit or sometimes I see the slippers he used to wear in the shops and think I need to buy him a new pair.

I don't think we ever feel normal, because how can it be normal with someone missing. I think we begin over time to feel more used to our new circumstances and make a new normal for us.

There is no rushing the process it all takes time and no amount of nagging by others will speed it up.

Hugs to everyone on a new unfamiliar path.

 

[count2ten]

Do things have to be sorted now, can you leave it a few weeks until you feel stronger?

You are grieving, your body has kept going through all the stresses over the years and is now looking for you to take it easier and recover your strength.

Maybe set one or two jobs to deal with each day and just take baby steps.

Age makes no difference - Grandad was 102 when he passed last November and I miss him dreadfully and still think when I get up some days that I need to visit or sometimes I see the slippers he used to wear in the shops and think I need to buy him a new pair.

I don't think we ever feel normal, because how can it be normal with someone missing. I think we begin over time to feel more used to our new circumstances and make a new normal for us.

There is no rushing the process it all takes time and no amount of nagging by others will speed it up.

Hugs to everyone on a new unfamiliar path.

Oh Fredsnail, you make so much sense , I should print off your posts and hand them liberally around to all my family and well meaning friends.... But the slippers! yes.. bought so many that didn't fit her poor old feet (I remember all those trips to the chiropodist , he used to make her feel like the queen, helping her into the big chair and chatting to her like she was royalty!). I finally found the right ones in Clarks , then someone nicked them at the CH, got her 2 more pairs but she didn't think they belonged to her so bit of a struggle getting them on so we could take her out.

And the flowers I used to buy her every week when she was still at home, just a few short months ago , where has the time gone? There was no point in taking any into the CH , they would just go missing, other residents would walk in and out of her room all the time, it was so annoying that they couldn't keep her door shut to discourage them. But then after a while she stopped knowing where her room was and never went there except to sleep. When I walked past the flower stall in the supermarket yesterday the tears started again, had to put the sunglasses back on while I walked round the shop.

I am taking on board all your advice, there is no need to rush anything. Done enough of that in the last few years. There's so much in my head I need to get out before I do any of the practical stuff. Thanks to everyone on this site, I don;t know what state I would have been in by now without all the good advice and understanding words. Love to everyone xx

 

[chrisdee]

Dear count2ten, wishing you rest, peace, soothing moments and understanding friends.
It will get better and those moments that catch you with tears will lessen - this is what I have been waiting for, for months and it seems to be happening at last - so there is hope. We came back from a holiday in Spain on Saturday, and this is the first instance of a return without a head full of worry and anxiety. but I still wish for one more day at the coast with Mum in a good state of health and able to enjoy it all, with her family and my little westie that she loved so much.
We are so attuned to 'doing' and there is not much we can 'do' about the grieving process. My theory is that perhaps the issues that Alz. throws up can prolong the process for some of us.
Try to treat yourself a bit, when you feel up to it of course. I came back from Spain with two extra pairs of sandals. Mum would have done the same!

 

[count2ten]

Hi Chrisdee, such a lovely post, and thanks for the positive thoughts and wishes. Good to know you were at last able to have a relaxing holiday. I like the idea of extra pairs of shoes - you can never have enough!

I can relate so much to the wanting one more chance to take mum out somewhere nice. I can't get used to not seeing her and hearing her voice - I know we had a funeral but now it seems like we just had a nice day with all the family and lots of pretty flowers - that seems strange to say - but I can;t seem to get it into my head that she's actually gone, after all this time of being here. People keep telling me to get away for a break but not really in the mood for it at the moment , and anyway I can't seem to get out of the habit of having to be "available". Socialising is such an effort as well (bit worrying as I'm starting a new job soon and have no idea how I'm going to concentrate, let alone get up in the mornings!). Maybe it will be a good thing having to smile and chat, I suppose the more you do it the sooner you start to feel normal again. Hopefully that's how it works. But it's caused a few arguments at times when I just don;t want to be around anyone, just my immediate family. I seem to be doing a lot of driving off on my own , parking up somewhere random, and just sitting there watching the world go by. Then I go and buy something I don;t need , but feel a lot better when I get home. I sometimes think that whatever I went through with my mum has changed me forever.

 

[chrisdee]

Hi count2ten, I too feel that the caring exprience has changed me forever, but perhaps in a positive way. I think that this is one of the defining experiences of dementia care and thus why only those of us who have been there are the only ones able to understand. All the best with the new job, may it be a positive step towards getting your head straight but don't expect too much of yourself just yet. Hugs and all that too . . .
Chris.

 

[MollyMae23]

I hadn been on the forum for sometime but feeling the pain returning this morning I logged on and am so glad I did. My mum died physically in March this year. I say physically because what I have begun to understand is that I lost her by degrees. From July last year until March she had become a vulnerable elderly lady who I needed to defend and protect from the health and social care system who saw her as just another dementia patient instead of my precious lovely mum.

Now during that period I lamented that our close relationship was being severed as she moved from one to one care by me to formal care in hospital and care home (mum broke her femur in a fall). When I talked about mum after she left me I always talked about our time together in those five years with affection remembering how we laughed and talked and how our love and affection for each other increased in the adversity of AD.

But now, a few months on and many tears and changes later I realise that that the mum I miss is before that period. The one who I could always call and chat about important and silly worries, the one who had an independent soul and would make mistakes and decisions for herself without dire consequences and most of all the mum who loved me no matter what I did or said. The mum I so took for granted and have never been able to say thank you and goodbye to because over the period of 5 years all that she was was slowly taken away from her. I think that is what defines a Dementia Death, not the physical decline although that can also be heart breaking, but the slow disappearance of the person you love and never ever being able to say goodbye properly. I like to think mum is still with me and that if she is she has returned to her real self and forgotten how dependent she became because if she were aware of any of those last months she would have been mortified.

So like the rest of you I am trying to move forward a changed person, no longer sure where my place is in the world and every day a little more memory comes back of my mum who I do not think I will ever be able to accept has totally gone but who I miss every single moment of every day.

 

[Scarlett123]

So true. The husband I miss is the one of 15 years ago, before AD, when we were enjoying our retirement, grandchildren, little treats, no mortgage etc. I have found it very cathartic sorting through photos, and remembering the happier days. After 9 months, I have found a peace that I wouldn't have thought possible.

Of course, I miss him like hell, but nothing is going to bring him back, and I know I have to make the best of things, even though I have numerous wobbles. I'm going to the Parish Office of my church now, to make a donation towards the floodlighting in December, in memory of John. His birthday was Christmas Day, and he died 2 days earlier, so I thought this would be a nice tribute.

 

[sleepless]

So true. The husband I miss is the one of 15 years ago, before AD, when we were enjoying our retirement, grandchildren, little treats, no mortgage etc. I have found it very cathartic sorting through photos, and remembering the happier days. After 9 months, I have found a peace that I wouldn't have thought possible.

Of course, I miss him like hell, but nothing is going to bring him back, and I know I have to make the best of things, even though I have numerous wobbles. I'm going to the Parish Office of my church now, to make a donation towards the floodlighting in December, in memory of John. His birthday was Christmas Day, and he died 2 days earlier, so I thought this would be a nice tribute.

A very nice tribute to your husband, Scarlett.

 

[Scarlett123]

A very nice tribute to your husband, Scarlett.

Thank you.

 

[Izzy]

That's lovely Scarlett.

 

[count2ten]

I hadn been on the forum for sometime but feeling the pain returning this morning I logged on and am so glad I did. My mum died physically in March this year. I say physically because what I have begun to understand is that I lost her by degrees. From July last year until March she had become a vulnerable elderly lady who I needed to defend and protect from the health and social care system who saw her as just another dementia patient instead of my precious lovely mum.

Now during that period I lamented that our close relationship was being severed as she moved from one to one care by me to formal care in hospital and care home (mum broke her femur in a fall). When I talked about mum after she left me I always talked about our time together in those five years with affection remembering how we laughed and talked and how our love and affection for each other increased in the adversity of AD.

But now, a few months on and many tears and changes later I realise that that the mum I miss is before that period. The one who I could always call and chat about important and silly worries, the one who had an independent soul and would make mistakes and decisions for herself without dire consequences and most of all the mum who loved me no matter what I did or said. The mum I so took for granted and have never been able to say thank you and goodbye to because over the period of 5 years all that she was was slowly taken away from her. I think that is what defines a Dementia Death, not the physical decline although that can also be heart breaking, but the slow disappearance of the person you love and never ever being able to say goodbye properly. I like to think mum is still with me and that if she is she has returned to her real self and forgotten how dependent she became because if she were aware of any of those last months she would have been mortified.

So like the rest of you I am trying to move forward a changed person, no longer sure where my place is in the world and every day a little more memory comes back of my mum who I do not think I will ever be able to accept has totally gone but who I miss every single moment of every day.

Oh MollyMae, just seen your post, I lost my mum in August and I can relate to everything you have said, so glad I read your post , it sums up my feelings completely. Thanks for sharing your thoughts on here, it's really helped me today. All the best xxx

 

[patsy56]

hi Chrisdee, OH has Parkinson's and yes seeing him "die" a little each day is heartbreaking.......I am giving up work to be his full time carer.