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TIPPING POINT

Dutchman

Registered User
May 26, 2017
612
Devon
Not at all. I was interested in your reasoning. Its just that your wife sounds at about the same level as my mum was when she moved into a care home - late mid-stage, I would say. It is very easy to read other posts and think that you are not so bad, and yet it is.
You are seriously not coping and yet you do not have any help and are talking about it having to get horrendous.
What is your line in the sand?
Thank Canary

I’ve just received a letter from the hospital asking me to go in for a prostate biopsy. That’s worrying enough but my point is that a mention of this to my wife means little where before, pre dementia, I would have been supported and hugged. I’m on my own. In fact, if I was really on my own I’d probably be better off. Since not recognising me as her husband I suppose I’m a just a nice man with a problem.
 

canary

Registered User
Feb 25, 2014
12,210
South coast
Since not recognising me as her husband I suppose I’m a just a nice man with a problem.
Yes. And she also cannot imagine what it is like for you. Her world has narrowed down so that she cannot see other peoples problems.
When our cat got cancer and had to be put down I came back from the vet and bawled my eyes out. OH said nothing and just watched me. When I had finished he said "what are we having for dinner?". Thats it, you see - they are unable to imagine what it is like for other people and can only see their own needs.
You have got to let go of the person they were in order to cope.

Think about what your line in the sand is.
 

Dutchman

Registered User
May 26, 2017
612
Devon
The problem seems, Hatto, that going off on a tangent although perfectly understandable is counterproductive.
We are the one that gets the boomerang back in the neck. Finding strategies and practising these when not worn out help a bit when exhausted at the end of the day.
You are right that for our own sake we need to focus on ways of nurturing our our own self (respect) and finding meaning in what we do beyond the every day chores. Practicing loving kindness needs to be fully there in one sense but anchored. So you can reach out but not get swept of your feet.
Rather like and actor fully in the role while doing it but not 'in real life'.
Try and use your respite time for you. When I had babies I slept when they did, I am doing that now. Do not push your standards too high.
P,
Yes. And she also cannot imagine what it is like for you. Her world has narrowed down so that she cannot see other peoples problems.
When our cat got cancer and had to be put down I came back from the vet and bawled my eyes out. OH said nothing and just watched me. When I had finished he said "what are we having for dinner?". Thats it, you see - they are unable to imagine what it is like for other people and can only see their own needs.
You have got to let go of the person they were in order to cope.

Think about what your line in the sand is.
Yes, that’s the nub of it. There’s no empathy of others feelings. The ability to read emotions, to recognise distress is gone. Today I felt she was upset about something and asked. She said ‘why wouldn’t I be when he’s (me ) not come back’ . So a strategy I have is to be as nice as I can so she won’t fret too much over his ( me ) disappearance. So difficult to do when you’re constantly treated like second in line .

The line in the sand is difficult to judge unless it’s so bad I haven’t any options left.i believe the time will come
 

AliceA

Registered User
May 27, 2016
2,812
It is tough when you have your own health to be concerned about, I do empathise as I am dealing with serious health concerns myself. I think we have to stop expecting much empathy if any. It is a lonely place. Have you thought of a telephone befriending service, I was offered one, if is usually free. AGEUK, silverline, etc.
I believe it is the same person who calls that they find to suit you. Thus building up a friendship.
I refused but who knows I may at some point. I did have a visitor for a while. Just someone that will chat to you and in that you may find a confidant.
I like most have looked at options about how to go about care, problem seems whatever we choose or what is forced upon us is never simple. Sometimes in life we exchange one set of problems for another. So for your sake please do not do anything hasty.
Do let us know how the biopsy goes.
 

Dutchman

Registered User
May 26, 2017
612
Devon
It is tough when you have your own health to be concerned about, I do empathise as I am dealing with serious health concerns myself. I think we have to stop expecting much empathy if any. It is a lonely place. Have you thought of a telephone befriending service, I was offered one, if is usually free. AGEUK, silverline, etc.
I believe it is the same person who calls that they find to suit you. Thus building up a friendship.
I refused but who knows I may at some point. I did have a visitor for a while. Just someone that will chat to you and in that you may find a confidant.
I like most have looked at options about how to go about care, problem seems whatever we choose or what is forced upon us is never simple. Sometimes in life we exchange one set of problems for another. So for your sake please do not do anything hasty.
Do let us know how the biopsy goes.
I think today I realised more than ever how lonely all this can be. After an awful night with little sleep I decided to go to our doctor. Just keep doing what you’re doing he says, keep the contacts, use your children more, etc. All good advice but today was the first time I felt helpless and at a loss of any resolution to any of it. Fortunately a friend came round so I went for a walk to clear my head.

The lack of any real respite from it is frightening and I can understand why some carers have so much stress it kills them. I feel now that I really must look after number one if I’m to survive this episode in my life. I wonder what the next stage in my wife’s dementia will be?
 

maryjoan

Registered User
Mar 25, 2017
1,405
South of the Border
I think that most of us live a day to day existence, but, when the blinds open and we really see that this is it for the rest of our lives - it is when the despair really hits.

I think most of us are at an age when we have taken life's journey - been young, had the dream, realised it or not, and now this is all we have, and, frankly, it is very scary.

My youngest son was down from Scotland last week, with his lovely wife, and baby son. My son is 31, his wife 29, and baby is 4 months. They have worked hard, established careers, bought their home, travelled the world, had their baby, and now are moving into a bigger, better house. I am so proud of them.

BUT I am also so envious of them - they have their dreams, and lots to look forward too - just like I did once. I am at the other end of the journey, in despair, with nothing but more anguish to look forward to.

It is no wonder that most carers are exhausted, depressed, and totally fed up....
 

jenniferjean

Registered User
Apr 2, 2016
741
Basingstoke, Hampshire

BUT I am also so envious of them - they have their dreams, and lots to look forward too - just like I did once.
I feel exactly the same. We were never the adventurous types, we worked hard to achieve what we could. We so looked forward to our retirement and then to realise our dreams. And dreams they remain....
 

Dutchman

Registered User
May 26, 2017
612
Devon
I feel exactly the same. We were never the adventurous types, we worked hard to achieve what we could. We so looked forward to our retirement and then to realise our dreams. And dreams they remain....
Today we go as usual to M and S for breakfast. Wife wants to look around the house to check that we’re on our own. We had several visitors yesterday and I think that it’s confusing her so she believes we have others in the house apart from me and her.

She’s sleeping on the sofa next to me now so at least she’s at peace. Confusion, anxiety and fretfullness are her life now. She forgets who I am repeatedly. I sleep in the next bedroom. Where do you live she says to me this morning. She loads up a bag with food to go where? To be honest her sleeping gives me respite and a little part of me wants her asleep more. Not much of a life is it?

Is it worth it noting down the progression of her dementia. In other words what she’s like day to day, week by week to see the extent of the decline?

Comments please
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,122
Kent
To be honest her sleeping gives me respite and a little part of me wants her asleep more
I can identify with this @Dutchman. No, it isn`t much of a life but it`s better than dealing with anxiety, confusion and aggression which we can do nothing to ease.

Now I have the freedom to do as I please and even that is not much fun either.
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,924
England
Is it worth it noting down the progression of her dementia. In other words what she’s like day to day, week by week to see the extent of the decline?

Yes it is @Dutchman. I kept a diary in word on my computer. Each night I recorded how the day had gone for my husband and just as importantly how things had affected me. It’s so easy to forget things and an accurate account is important. When things began to deteriorate I printed them off and our CPN would take them to his consultant so when we had our appointment he knew exactly how things were without asking me awkward questions in front of my husband who of course thought everything was fine.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,808
69
Dundee
Totally agree @Dutchman. I kept a log of how things were. Prior to appointments with the consultant at the Memory Clinic I used this to type a letter summarising my thoughts and concerns. I handed it into the clinic the day before the appointment and this meant I didn’t have to talk about my husband in front of him. It also meant I left nothing out.
 

maryjoan

Registered User
Mar 25, 2017
1,405
South of the Border
Yes it is @Dutchman. I kept a diary in word on my computer. Each night I recorded how the day had gone for my husband and just as importantly how things had affected me. It’s so easy to forget things and an accurate account is important. When things began to deteriorate I printed them off and our CPN would take them to his consultant so when we had our appointment he knew exactly how things were without asking me awkward questions in front of my husband who of course thought everything was fine.
We never have appointments at Memory Clinic or elsewhere - and I can't seem to discover why not....
 

canary

Registered User
Feb 25, 2014
12,210
South coast
We never have appointments at Memory Clinic or elsewhere - and I can't seem to discover why not....
Mum never did after she was diagnosed either - she was simply referred back to her GP.
I think it is a post-code lottery, but it also seems to be the way it is going across the country.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,808
69
Dundee
My mum had vascular dementia and was never referred to a memory clinic. My husband had Alzheimer's and had 3 monthly visits to the memory clinic until they deemed his score on the MMSE to be too low for medication to be prescribed.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,122
Kent
We didn`t have memory clinics either but my husband was seen by his consultant every six months until he went into residential care.

These appointments weren`t really to change anything for my husband or for me. I think they were just to monitor the progress of Alzheimer`s for statistics.

However the consultant was very caring and liaised with the Community Psychiatric Nurse [CPN] who was readily available.

I think we were very lucky. The cuts weren`t as bad in the time around 2006-10 I shudder to think what we would get now times have changed so much.

It sounds as if there is a better knowledge of dementia but less support.
 

Agzy

Registered User
Nov 16, 2016
1,272
Moreton, Wirral. UK.
As I've contributed to this thread and exchanged posts with many of you on various threads I just thought I'd say goodbye to you all and wish you all the best as I am leaving the forum to concentrate on my own caring role. I hope that you can all find, at the very least, some moments of relief and normality in the future. However, when you shed a tear know that you are not alone.

I have asked for closure of my membership so I hope you see this goodbye before it's deleted.

Regards
Pete:)
Just read this @karaokePete and understand and respect your decision, keep up the singing.
 

Dutchman

Registered User
May 26, 2017
612
Devon
I can identify with this @Dutchman. No, it isn`t much of a life but it`s better than dealing with anxiety, confusion and aggression which we can do nothing to ease.

Now I have the freedom to do as I please and even that is not much fun either.
Asleep again. It’s 11.30 and she’s been asleep since we got home from breakfast at 09.30. No wonder she wants to move around, get dressed and want to go out at 21.00 last night. Is this it then? ..wants to sleep more and more because she’s bored, no motivation or a good way of being out of the anxiety loop. Someone said she would probably sleep more and more as the VD progresses. Shall I throw a bucket of water over her?(joke) or
shall I ?

I suppose in one way it gets me used to being on my own. There is now no sharing of anything. No shared memories, no sharing of forthcoming events. Everyday is just the day.

Can I ask anyone , when/ what we’re the circumstances when it felt right to consider a home for the PWD. She’s not there yet but I wonder if it becomes obvious.

Thank the stars for this forum/my journal
 

canary

Registered User
Feb 25, 2014
12,210
South coast
Can I ask anyone , when/ what we’re the circumstances when it felt right to consider a home for the PWD.
I think you will get a variety of replies to this question

My own feelings are that it is time for a care home if:
1. you cannot keep the PWD safe
2. the PWD is likely to cause injury to others
3. the main carer can no longer cope with the level of care required

For my mum it was because I could not keep her safe.
 

Duggies-girl

Registered User
Sep 6, 2017
1,853
Hi @Dutchman I considered a care home for dad well over a year ago when my husband had 2 heart attacks and i just could not cope but then we found that dad had cancer and would not be getting treatment (it was the correct decision in my opinion) and I just felt that I could not put a dying man in a care home and instead decided to try and make his remaining time as nice as possible in his own home.

We muddled through quite well until his hospital admission in February this year for pneumonia followed by a heart attack and a stroke and 3 falls and I went looking at care homes but again i felt awful about it and home he came. He has recovered well and can get about in his house but in hindsight he should have gone straight from hospital to a care home and he probably would not have noticed. At the time I could easily have got away with telling him that it was for recuperation. I don't think I would get away with it now though.

Dad gets out of bed in the morning at anytime between 8.00 am and midday, he has breakfast and goes straight back to sleep in the chair for most of the day. He can stay awake for a quiz show or a documentary but he can't follow a lot of programmes so he goes to sleep. He goes to bed whenever I say it is time and sleeps through the night. He is no trouble whatsoever but it is incredibly boring and I am only doing this because he is supposed to be dying. If he wasn't ill I am sure that he would be in a care home by now.

The thing is that he is safe at home and happy as Larry so I feel that I stuck with it until something happens to change things. I think it will only take another incident like a fall or an infection and dad will have another downturn and then he will not know where he is and it will be a lot easier for me to arrange a care home and he probably would not notice.

Incontinence would be another line in the sand for me. Amazingly dad still takes himself to the toilet although I leave his bathroom light on at night.

I feel for you, I really do and if it was my husband I think he would have gone into a care home well before now because I could not cope with the thought of this going on for years. Dad has got away with it because I know it will end at some point although that point is stretching out further than I expected.

Not a lot of help I suppose but you are obviously considering it and that means that the time is approaching and you should not feel guilty because you have done so much already and you deserve to have some sort of life of your own and I agree everyday is the same.