Are we not important too?

[sammyseal]

If only my dad could see that he is just as important as my mam. He has told me often that he is not important. However I try to explain to him that he is - if nothing else, he's important to me - he just won't or can't see it . I'm afraid I've given up trying to persuade him, now. I don't believe he'll ever change and that makes me so sad, while at the same time admiring him for his determination. But I feel that I'm losing two parents to Alzheimers, and that's something I find difficult to cope with. In fact, to my shame, it's made me withdraw a bit. Self preservation.

I feel exactly the same collegegirl. My Dad seems fully prepared to give up the rest of his life to caring for my Mum and I do admire him for it, but selfishly I want him to have time (and a little bit of energy) left over for me and my daughter, who is only 9 and idolises her Grandad. I think it's just something else to add to the list of things to try and come to terms with

 

[stanleypj]

I cannot believe that caring for a loved parent or spouse with dementia, no matter how loved, makes anyone happy. How can it, on any level? In my experience, when dementia enters, true happiness fades for both carer and the cared for.

I can't disagree with this Saffie.

But some thoughts have struck me reading through this interesting and useful thread:

1) I've found that there is some satisfaction to be had from knowing that you are improving the quality of a loved one's life. It's sometimes short-lived because so many things can go wrong, every day.

2) I've had some brief moments of pleasure when Sue manages to do something she hasn't been able to do for a long-time or, when she could still talk and make sense and was able to express her own momentary happiness. I'm still aware that she is sometimes happy - laughing and animated - but as I'm not able to share what is going on in her head it's not quite the same. Still, it's something.

3) There are many horrible diseases which can lead to awful deaths. Many relatives of people who die from these diseases must also have that shadow hanging over them. So is dementia uniquely awful?

 

[doodle1]

Yes Stanley I do think dementia is uniquely awful as with most other illnesses the person has capacity despite being very ill. I care for 2 parents with complicated I'll health and quite advanced dementia and there is not a positive moment. Even if you have full time care there is never a day off from reality. I think it is very healthy to take the approach that your life and the caree's run in parallel rather than your life becoming the caree's.

 

[Sianey]

Guilt

I am having a couple of days away and caught up with the forum just now, very true thread and yes writing this whilst feeling v v guilty wondering what my Mam is up to in the care home, re arranging her clothes over and over and I aren't there till mid week to tidy them so I feel guilty for that and so the guilt goes on...............

The thought of my own daughter going through this is with me is a horrid thought.

 

[Lindy50]

This is such an important and moving thread

In my case, I love mum, and therefore I want to care for her. It's as simple as that, really. I would give up a great deal, in fact have done so, to be able to carry on caring.

I can't say it makes me happy, exactly, because I would obviously prefer mum not to be ill.....but it does give me great satisfaction to be able to support her, and do whatever I can to maintain the quality of her life. And every small achievement, from mum eating a piece of cake, to enjoying the view, to helping mum keep clean and well dressed, does, quite definitely, give me joy.

Circumstances ( mum's health and mine) now dictate that she needs residential care. I know in my head that this is the right thing to do, but I feel absolutely no sense of satisfaction in having wrestled this out of the system.

It's interesting how far we will go as carers....only today my daughter said to me "you know mum, you had to stop, or it would have broken you and dad's marriage. And that wouldn't have been right, to sacrifice your marriage for nanny, much as we all love her". She's right, I think, but that doesn't make the situation much easier to accept.

Lindy xx

 

[stanleypj]

Yes Stanley I do think dementia is uniquely awful as with most other illnesses the person has capacity despite being very ill. I care for 2 parents with complicated I'll health and quite advanced dementia and there is not a positive moment. Even if you have full time care there is never a day off from reality. I think it is very healthy to take the approach that your life and the caree's run in parallel rather than your life becoming the caree's.

I'm not sure about this. Without spelling out the gruesome details, some people with full capacity die horrible deaths. Having full capacity, knowing what they can expect, would only make it worse for them surely? And their loved ones would certainly have their lives changed forever.

 

[Kjn]

I know what you are saying Stanley , don't disagree . I've seen various deaths in prev job, found a man who committed suicide out walking , dad has dementia , both our fathers have had cancer , know a teenager who took drugs and at 23 can't communicate but is alive and immobile and a girl only early 40s who had a stroke but has locked in syndrome.
I don't think there is a particular way which is worse than another even though dementia upsets me a lot . I really don't know what's worse as all are pretty awful.
Just my opinion of things..

 

[jaymor]

Life for my husband became more acceptable once he lost capacity. Prior to the loss he was so tormented by the disease he continually sort to escape the illness by harming himself. Something I could not have lived with would have been if he had achieved his desire.

For us, loosing capacity meant a much easier time.

 

[garnuft]

My friend just died, she had lung cancer with secondary spinal tumours. She was 58.

Her third of four children was 29 in May. He had Down's Syndrome.

She was VERY aware of the impact her death would have on her son, as well as being aware of the impact HIS life had already had on all of her children's lives.

Never mind her own.

She struggled for the last 29 years and STILL was stung by the injustice of fate.

Sometimes there are no happy endings, sometimes there are happy lives that hold a sting on their tail.

Sometimes there are neither and some poor souls endure a lifetime of misery before death creeps up on them.

It doesn't do to imagine one thing is worse than another.

As my little Mam said "count your blessings".


Sent from my iPhone using Talking Point

 

[AndreaP]

The comment made about not wanting to inflict this on our children or partner was crucial to my decision. Also that if asked 10 years ago what I should do in this situation, mum would have said "put me in a care home".

I also considered whether keeping her at home was making her happy and the truth is it wasn't. Although she didn't want to go I know that was more fear of the unknown and the fear of losing what little independence she still had. I truly believe she is no less happy in the care home but her grumbles are about different things. She is not jumping for joy to be there that's for sure but she wasn't happy at home by any means either. She was plagued with fear and anxiety about what needed to be done that she could no longer remember. We wrote things on a calendar but she would move it from the fridge door and then forget where she put it.

I also question the dementia sufferers true capacity for happiness. She was being tormented by the loss of her faculties and her failing eyesight. Life was a struggle but she clung grimly on rather than embrace the idea of being in care. I console myself now with the fact that she is surrounded by people which she has always loved and is getting wonderful meals which she raves about. I think there is more opportunity for pleasure now and that is a comforting thought.

 

[stanleypj]

I also question the dementia sufferers true capacity for happiness.

I'm quite prepared to believe that this is true of your mum and, by all accounts, of many other PWD. It can't be true of all though. There's plenty of evidence on TP that some people with dementia can be happy some of the time and I can't see why anyone would wish to deny that.

 

[Cat27]

The comment made about not wanting to inflict this on our children or partner was crucial to my decision. Also that if asked 10 years ago what I should do in this situation, mum would have said "put me in a care home".

I also considered whether keeping her at home was making her happy and the truth is it wasn't. Although she didn't want to go I know that was more fear of the unknown and the fear of losing what little independence she still had. I truly believe she is no less happy in the care home but her grumbles are about different things. She is not jumping for joy to be there that's for sure but she wasn't happy at home by any means either. She was plagued with fear and anxiety about what needed to be done that she could no longer remember. We wrote things on a calendar but she would move it from the fridge door and then forget where she put it.

I also question the dementia sufferers true capacity for happiness. She was being tormented by the loss of her faculties and her failing eyesight. Life was a struggle but she clung grimly on rather than embrace the idea of being in care. I console myself now with the fact that she is surrounded by people which she has always loved and is getting wonderful meals which she raves about. I think there is more opportunity for pleasure now and that is a comforting thought.

There are lots of accounts of happy moments on TP.
My dad has happy moments.
I'm a firm believer in counting my blessings.

 

[Chemmy]

The comment made about not wanting to inflict this on our children or partner was crucial to my decision. Also that if asked 10 years ago what I should do in this situation, mum would have said "put me in a care home".

I also considered whether keeping her at home was making her happy and the truth is it wasn't. Although she didn't want to go I know that was more fear of the unknown and the fear of losing what little independence she still had. I truly believe she is no less happy in the care home but her grumbles are about different things. She is not jumping for joy to be there that's for sure but she wasn't happy at home by any means either. She was plagued with fear and anxiety about what needed to be done that she could no longer remember. We wrote things on a calendar but she would move it from the fridge door and then forget where she put it.

I also question the dementia sufferers true capacity for happiness. She was being tormented by the loss of her faculties and her failing eyesight. Life was a struggle but she clung grimly on rather than embrace the idea of being in care. I console myself now with the fact that she is surrounded by people which she has always loved and is getting wonderful meals which she raves about. I think there is more opportunity for pleasure now and that is a comforting thought.

That could be me writing about my MIL eighteen months ago. I kept going on to my OH and his sisters that many of her symptoms were caused by malnutrition but this was dismissed as being an exaggeration. However, once the dirty baggy clothes were removed, there was a frail little old lady, weighing just over 5st. hiding in there. We did a conversion on her weight this week and she's now 6st 12lbs.

She was a little upset when we saw her as her friend in the home had died just the week before. Another lady, who had been on respite and had called back in, knocked on her bedroom door to say hello when we were sitting there.

But I think it was the fact that she now had friends that surprised us most! Last year, back home, she had - literally - sat cowering in an armchair in the hope that she wouldn't be spotted when she saw a new neighbour coming down her drive to say hello. She was paranoid about answering the door and had no friends. And I mean no friends, only family.

That was the reality of her so-called 'independence'. It was more like a prison sentence. I have asked my children never to let me get into the state Grandma was in, however much I might protest.

 

[Pickles53]

The comment made about not wanting to inflict this on our children or partner was crucial to my decision. Also that if asked 10 years ago what I should do in this situation, mum would have said "put me in a care home".

I also considered whether keeping her at home was making her happy and the truth is it wasn't. Although she didn't want to go I know that was more fear of the unknown and the fear of losing what little independence she still had. I truly believe she is no less happy in the care home but her grumbles are about different things. She is not jumping for joy to be there that's for sure but she wasn't happy at home by any means either.

This is how my mum was too. She continually said how miserable she was at home and once she could no longer go out she hardly saw anyone except me, and I lived 60 miles away. I eventually realised that I couldn't make her happy, but I could keep her safe.

 

[jaymor]

There are happy moments. My husband can jabber away, non of it understandable to me. He could be telling me poor George has passed away or they had all sneaked down to the kitchen at midnight and scoffed all the cake intended for afternoon tea. Sometimes he will smile and give a little laugh so what ever he was telling me was of something good that made him smile.

He also talks with his eyes. Feeding him his lunch I will ask if he is enjoying it, his eyes will sometimes open really wide and his face has the expression that tells me he is. He does not need the words he can no longer remember or say.

I carry the sadness, I am not so sure my husband does now he is so advanced.

I too count my blessings.

 

[Padraig]

One's perspective on life is determined by events that have influenced my life from the start and life as it unfolded. I take the view, that each person has either large or smaller loads of manure dumped in their life's path. We can either smother in it, or learn to use it to our benefit and obtain valuable fruits.
Along the way I've had many loads of manure dumped in my path. The first consignment came at the age of two when I was locked away from my family and home. It was considered in my best interest that all contact be severed. To grow up without a home, family or education had its advantages as well as disadvantages. The next load of manure was the largest. It prepared me for the others that followed.

To have our child suddenly taken from us was the worst experience. Our fifteen year old daughter and I had arranged a holiday the following day. That evening I kissed her prior to my wife and I left the house for a walk. On our return home the phone rang to tell me that our daughter had been knocked down whilst out with a friend. She had been killed. From that experience I learned much.
Time, is the most precious commodity we are given. We know not how much we each have. When Alzheimer's visited us the one message I understood was; our time together was running out. With that in mind, I was determined to provide the best possible quality of life for the love of my life. Now I can reflect on those years and strange as many may find, I have many happy memories. Best of all I can look back on them as I recorded our journey on CDs.
When I was informed that I had stomach cancer I thought: the next load has arrived! Can't complain I've had an amazing life and am still running.

 

[canary]

Mum wasnt happy in her own home either, even though she clung to it. She thought that she was coping and had no problems - of course she did all her own laundry and shopping and housework etc etc. In truth she was doing nothing and eventually got to the stage when she didnt even recognise her own home and used to go out walking and getting lost.
When she went into a CH I was relieved as I was so worried about her, but I didnt expect her to thrive as she has. It took her a few weeks to settle, but then she started putting on weight and made friends. She joins in activities and she is still OK to take out, so we go to the seafront, or park or garden centre which she loves. It is so good to see her smiling. She is not happy all of the time (which of any of us is?), but I would say that she is content most of the time and has many periods of happiness. I know with dementia things can change overnight, but this is much better than I imagined and I hope it lasts a long time.

 

[Chemmy]

. She is not happy all of the time (which of any of us is?), but I would say that she is content most of the time and has many periods of happiness.

I often used the word 'content' talking about my mum when she was in her CH too. Even in her latter days when she couldn't join in anything, just having other people around 24/7 seemed to be comforting.

 

[AndreaP]

Padraig, I am so sorry life has given you so many challenges. I am glad though that you have come to terms with those challenges and that you are not bitter. Clearly caring for your loved one with dementia was the best thing for you and is the right thing for many other members.

But I suspect there are many who like me did not embrace the care of a loved one in the same way. That was due to my limited capacity to cope with the stress involved. I had to overcome my tremendous feelings of guilt over forcing her to move where she didn't want to go.

I rationalised it in the manner described in my first post. I was not intending to convince others that this was the right path for them. If I had felt that deep commitment to be there for mum until the bitter end, I would have done the same. I kept hoping that something would force the issue, a minor health crisis or such like, and the decision would be out of my hands but it never came and my stress related reflux was making me ill.

I described my experience for the benefit of others who were struggling with the decision about care and were so bound up in feelings of "a loving daughter/son would not do this to their parent". Well I did and the whole family has breathed a massive sigh of relief. It is not a decision you need to feel guilty about, that was my message.

I congratulate all those who have chosen a different route. I admire your commitment and ability to cope and I'm glad you find joy in providing care. Ultimately it's an individual choice which way to go. My message is it isn't wrong to choose a care home if you're not coping - the carer has rights just as important at the dementia patient.

 

[Grey Lad]

Edited from last post by AndreaP:

I congratulate all those who have chosen a different route. I admire your commitment and ability to cope and I'm glad you find joy in providing care. Ultimately it's an individual choice which way to go. My message is it isn't wrong to choose a care home if you're not coping - the carer has rights just as important at the dementia patient.

Ends.

I agree completely: the carer also has rights as difficult as they might be to establish.. G L