It can be done. (caring at home)

[Casbow]

Eleonora

I had my 77th birthday this week, and my husband, Michael, to whom I had been married for
54 years, sadly died last month. He had just had his 90th birthday.

When he was first diagnosed with Alzheimer's, (Which later became Mixed Vascular Dementia and Alzheimer's.) I promised both myself and Michael, that I would nurse him, at home, until the very end.

Thank you Talking Point for leading me, gently, through the various stages, and making it possible for me to have a pretty good idea of what I might expect!

I now get great comfort from knowing that I did manage to care for him for 9 years, until his death, at home. He was, as usual, still holding my hand.

He knew who I was for most of the time, except when UTI's were affecting his poor mind; and we were able to sleep together, holding hands, until the last three days of his life, when a hospital bed was installed in our sitting room.

Thanks to his Carers Allowance, I had very good support from a Carers Agency; and even had 3 hours, twice a week to get out to shop.
I know from reading other posts that that is not always the case.
A Councillor from Age Concern was of enormous help with claiming every allowance to which we were entitled. I cannot thank her enough.

I know I was very lucky, but possibly it might encourage others to know that it can be done.

Hugs to all T.P. members who are still struggling to care for those they love.

So sorry to hear of your loss. You have been amazing to have looked after your husband until the end. You must be very proud, and I guess also very sad at this time. Well done and I send you my love for giving us all hope to be able to do the same.xxx

 

[Eleonora]

Oh bother!


When I started on my post "It can be done." I had something
of a debate with myself about how it would be received.
I believe I acknowledged the enormous help I had from
Social Services, Age Concern, Talking Point members,
and our care agency.
Ours was not an easy journey together. Three years ago,
I had breast cancer, and needed sixty daily sessions of
radio therapy.
But with help from our local day-care
center, Michael was able to be looked after in the morning,
while I had my treatments. I then took over his care in the
afternoon.
A care home was my only option for him, when, after a fall,
and a serious shortage of platelets in my blood,
I suffered a huge brain haemorrhage.
Sadly, Michael had to stay in care for six weeks,
while I recuperated. They cared for him very well, but
it was not what we wanted.
I can remember the joy on his face when he was told that he
was coming home . I don't think he remembered
where, "home" was, but he knew it was what he wanted.

Obviously, there are many different circumstances when
a care home becomes unavoidable, as it was for me for a while.
However, I know from experience that sometimes, caring at
home can be done - with good support.
We all get through dementia the best we can.

 

[LadyA]

Glad you were able to get such good support Eleonora. Certainly, that would make all the difference. After a lengthy battle, I was able to get a care assistant for 45 minutes ( less his travelling time, so effectively, half an hour) once a day - and not on weekends, bank holidays etc. As William wouldn't allow me to change his incontinence pads or help wash or get him dressed by this stage, and trying was getting dangerous, you can imagine how it was here. Of course, extra support wouldn't have changed the fact that he wasn't eating or drinking or taking his medication.

 

[Padraig]

Eleonora, I don't think I could have achieved what you did considering your health condition. Today, coming up to my mid eighties I consider I've been very lucky to have had the strength to support my wife. Like everyone else I encountered the many problems that other carers experience, I hasten to add not many of the problems, such as having to work to support a family.

In the beginning I did not have a computer to look up the effects of Alzheimer's or its stages. When I did buy one, I found a website dealing with the illness. I'd wished to learn from others who were caring for a loved one on there own, in there own home. My wife was what is referred to as 'the end stage' I had taken her home. It was the U.S. 'Healing Well'. I'd hoped to share experiences with others in the same boat as I. Unfortunately I had no luck and was advised not to attempt the impossible.

I'm pleased to tell I was given my own special section titled: "Padraig...My Wife ...My Story" To this day I have more than a hundred sheets of posts of that period from people that followed the story with interest.

It covered all aspects of AD as it unfolded and my methods to dealing with them.
They included: Seeing imaginary people, loss of special awareness that resulted in falls. Attempting to find her 'way home'. On one occasion I had to contact the police with dogs to search for her. When she refused to eat and I was advised by the GP not to force feed her, I managed. There were pressure sores, swollen ankles, when rigidity set in, plus seizures I learned to take care of them.
All I wanted to do was share all I learned along the way. There are many reasons I chose to go it alone.

 

[fizzie]

hi Padraig
I've read some of your story in bits and pieces and I think you did a grand job and a even grander job of sharing experiences and trials and tribulations along the way. Thank you xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[tigerlady]

I had my 77th birthday this week, and my husband, Michael, to whom I had been married for
54 years, sadly died last month. He had just had his 90th birthday.

When he was first diagnosed with Alzheimer's, (Which later became Mixed Vascular Dementia and Alzheimer's.) I promised both myself and Michael, that I would nurse him, at home, until the very end.

Thank you Talking Point for leading me, gently, through the various stages, and making it possible for me to have a pretty good idea of what I might expect!

I now get great comfort from knowing that I did manage to care for him for 9 years, until his death, at home. He was, as usual, still holding my hand.

He knew who I was for most of the time, except when UTI's were affecting his poor mind; and we were able to sleep together, holding hands, until the last three days of his life, when a hospital bed was installed in our sitting room.

Thanks to his Carers Allowance, I had very good support from a Carers Agency; and even had 3 hours, twice a week to get out to shop.
I know from reading other posts that that is not always the case.
A Councillor from Age Concern was of enormous help with claiming every allowance to which we were entitled. I cannot thank her enough.

I know I was very lucky, but possibly it might encourage others to know that it can be done.

Hugs to all T.P. members who are still struggling to care for those they love.

So sorry for your loss and at the same feel that you were so lucky to be able to care for him at home. I only wish I could care for my OH in the same way. He never admitted anything was wrong, got increasingly aggressive, but with no recollection of the aggression immediately afterwards. If it hadnt been for the aggression and the wandering off trying to find "home" I think I could have coped - still in the back of my mind is the thought that as the dementia progresses maybe I could have him back as he may get easier to manage - probably just a pipe dream. He seems settled in the care home and knows who I am and I spend quality time with him and take him out - he was always ok when I took him out - it was at home that he was so unsettled.

I am gradually reading all the threads here, and am so full of admiration for those still caring for their loved ones, and at the same time I get a little reassurance from those like me that have had to give up the battle for their own and their loved ones safety and well being, and although we try and put the guilt monster away, we know we willl always live with it.

Sending my love and hope you cope in the future xxx

 

[fizzie]

I think often aggression and/or personality changes are key factors.

I looked after my ma at home plus a husband with terminal cancer and two teenagers and worked part time too but my Mum wasn't aggressive. She didn't like me very much but that wasn't much change from normal lol but I remember the day centre which was mainstream telling me that they were happy to keep mum because although her memory loss was severe, she was very settled and they were rather fond of her Had she been aggressive we would not have had the same kind of support and I would not have been able to put my children at risk.