And so it goes on...

[AliceA]

Absolutely the same thoughts here! I would need two rooms with visiting rights! I am not sure that the finances would work out though.

I have just started reading Don't let my Past be your Future, by Harry Leslie Smith. Born in the 1923 he writes of how we are in danger of returning to that time. Austerity seems to hit the most vulnerable. It is beautifully written and essential reading to the post war people who have naturally taken so much for granted.

I once listened to a lecture by a lecturer from one of the northern universities. I have hunted for details without success.
She explained how money is not 'real' it is a matter of trust. We trust the figures on our bank statement as being correct. It is but only as far as if we all do not want it at the same time. Same with insurance etc. Therefore she said austerity was not the way. She spoke of a responsible government working for the benefit of society would not need austerity. She explained creating the right jobs to benefit people would generate the funds, she had a circular example. She was was not against capitalism but a fairer ratio. Similar to the original building societies. She had interesting ideas. Certainly the rich are getting richer, the need for food banks etc. show the wealth gap is widening. I too had hopes for David Cameron's initiative.

In the meantime I think this green paper on social care will be too late for many of us. They then have to implement it.
I am caught between local care which could be affordable but out of reach because of a county border.
Sometimes like you I feel like throwing in the towel and getting a bit of care for me at the same time. Prison may be the fall back answer Mixed emotions on this subject, I am not sure what they all stand for so put them all in! Happy weekend everyone.

 

[canary]

Oh how I understand your says that you think that your OH needs a break from you too @Grahamstown
When OH went on respite recently it was as much to give him a break form me as it was to give me a break from him. We were both of us stressed and the stresses were winding each other up which just produced more stress.

OH enjoyed his break . It was sold to him as being a "hotel with nurses" (and truly had that feel) and we were both more relaxed when he got back. I said to him that it could become his little bolt hole and he visibly brightened at that point. It would be nice if he could think of it as his little escape from his boring, grumpy wife!!

 

[Grahamstown]

It was sold to him as being a "hotel with nurses" (and truly had that feel) and we were both more relaxed when he got back. I said to him that it could become his little bolt hole and he visibly brightened at that point. It would be nice if he could think of it as his little escape from his boring, grumpy wife!!

How much I hope I have the same result! I say the same thing, it’s a hotel with people who can help you with the things you have trouble doing that I help you with and he agreed at the time but as he has no conception of what that means the reality will tell.

 

[Starbright]

@Grahamstown .... my oh had a respite week in February after a short spell in hospital, it put out as a convalescent home to help him rest and recover. I couldn’t keep away and went up there every day for 4 or 5 hours and as they say “Hindsight is a wonderful thing “and I just wish I had stayed away. Although my nights where not disturbed and I had lots of space and privacy which is something I don’t get much of these days.
It’s so hard to let go and let someone else take over isn’t it. You’ll come back refreshed and that’s what you need.
Take Care A x

 

[Mudgee Joy]

I put my husband into morning care at a local home because it was the only one with dementia and non-dementia mixed. My husband had a good day - very chatty - not ready to leave when I went to pick him up !! What a great sign- sounds like you picked the right place @Grahamstown .

And I must say I think people with dementia can be manipulative- like a small child - they know how to get and keep your attention. On one occasion When my husband did not know I was nearby he was having a very pleasant time - then realising I was there he complained (albeit gently) that I should have come earlier !!

Have a great holiday !! And don’t be surprised if the home doesn’t say he enjoyed himself !

 

[Grahamstown]

After my call to the surgery about his decline and a telephone consultation the doctor told me to book a home visit. In the current climate I was amazed but did so. He had the home visit today from the GP who gave him a verbal memory check up and checked his blood pressure, which he couldn’t remember shortly afterwards. He was watching the news in bed having only been up an hour and couldn’t remember what was on. He can walk two miles apparently plus other random incorrect information about his life now. He is living an imaginary life which keeps him happy and keeps him thinking he is fine, which he told the doctor he is. She raised the question of Do Not Resuscitate with us and when she asked him he said oh yes I would like that. Not sure he knew what that was but afterwards in discussion the doctor said that he now doesn’t have capacity and that the family should discuss it and get the forms from the surgery. Ugh... it has been coming but the decline over the past month is now biting. My only consolation is that he is gentle and cooperative, without psychotic or disturbing behaviour. She was insistent that I must now safeguard my own health and discussed with him about getting more help with personal care at home. I shall attend to this when I return from the holiday. I really felt that this visit was worthwhile because she has a much clearer picture of him rather than a quick surgery visit. At last I have had some professional input and I feel like I am supported.

 

[AliceA]

It was good she called in, a much better picture I should think. X

 

[Grahamstown]

It was good she called in, a much better picture I should think. X

Absolutely, she did indeed. He was just lying in bed watching the news and she carried on with him there and could see exactly how he is. That is the advantage of a home visit but not always easy to get. She actually told me to book one because I wouldn’t have done so otherwise.

 

[AliceA]

I do think that we should be able to get home visits, at least now and again.
We had an assessment when suddenly my husband left and shut the door.
This would not have happened at an appointment, it gives a false picture when hosting cracks in.
How are you holiday plans going? X

 

[Duggies-girl]

@Grahamstown My dad's doctor came today and did a DNR form for dad. Dad has been referred to the hospice and the hospice nurse arranged for the GP to come. Dad was exactly the same and told his doctor that he could look after himself and walk for miles also I apparently pop in to see him most days. I think his doctor saw through him as dad had his walking frame standing in front of him at the time. Yes an imaginary life is a good description.

Dad obviously did not understand why the doctor was there but we have the form anyway. The GP circled the box to say that the patient did not understand but put my name on the form as POA I think I have made the decision for dad and I am fine with that. It's done and it is in a safe place where dad can't shred it like he does most things.

I am glad you feel supported, it helps.

 

[Grahamstown]

I am so relieved to see what you have done @Duggies-girl because I discussed it with my daughter this evening and she was clearly upset by the fact that we have to make the decision for him even though she realises we have to do it. It is such a shock to find oneself in this situation.

Yes I did feel supported because as she left she said that I must call her and ask for a referral form for a carer to help with personal care. It’s needed too, as I dread having to get him into the shower because it’s so exhausting for him. He hasn’t had one for days or changed his clothes so I must gear myself up to do it.

 

[Duggies-girl]

@Grahamstown I need to get help for dad too because he has not showered for months. He has a shloosh sometimes and talks a lot about having a wash but I doubt that it is adequate. I don't want to be to be intrusive so he gets away with it.

This seems to be a very difficult stage that we are at. I don't want to upset dad but something needs to be done. The problem is that dad truly believes that he takes care of himself and I just help out here and there. If only.

The hospice nurse was very good but getting dad to accept help is another thing altogether because he doesn't need help.

We can only do our best.

 

[Grahamstown]

The problem is that dad truly believes that he takes care of himself

My husband is just the same and thinks he could look after himself if I wasn’t there because of some emergency, which has never happened - yet. I sometimes think that the brain disease is protecting them from the reality of their dependence. He is in total denial about what is wrong with him and I find that very difficult.

Last night I had a funny turn when my gut started feeling very sore and cramping. I started sweating badly and felt quite faint but managed to lean back and slowly survive and eventually get back into bed and lie flat. I did recover and got back to sleep but it was still frightening as I wondered what would happen if I passed out. I have never done that in my life but now it is a worry if I am ill. The doctor referred to this yesterday and asked if we had a plan in place. Yes but not if I am out cold in the bathroom. Something has upset my tummy but I don’t know what. I guess it will get better.

 

[Grahamstown]

How are you holiday plans goin

Good morning @AliceA I am more or less organised. My husband is going to respite for two weeks and I am going on the holiday. The doctor could see quite clearly that he could not travel now and that I needed some respite too. If I had not booked this holiday a year ago we would just plod on but last year I just had to keep being optimistic but now I am on my own as his abilities are so limited so it is a mixed blessing. It’s a matter of taking the changes in your stride as they happen because you cannot foresee the future. I am still reasonably heathy enough to be living a normal life but I am feeling dragged into a disabled life. Sometimes I think he would like to see me as weak as he is but that’s silly.

 

[Mudgee Joy]

Hi @Grahamstown and @Duggies-girl
My husband is also not travelling well ! (Understatement) . What is frustrating is that you plan one thing for the way they are - then they get worse or occasionally better ! A moving target.
My husband is very weak - but has strong bones from years of cycling - he falls over almost every week - is annoyed when I offer his walking stick - but then wobbles along - so frustrating - I can see the wheel chair will be next - oh hell !
He went to respite today but didn’t enjoy - looked for me , kept no food down till he came home - then soup was ok!
Do have a great holiday Grahamstown and try to live in the moment ! Don’t fret - forget !
I have one night off next week it will rejuvenate me !!
Lots of love MJ

 

[AliceA]

Good morning @AliceA I am more or less organised. My husband is going to respite for two weeks and I am going on the holiday. The doctor could see quite clearly that he could not travel now and that I needed some respite too. If I had not booked this holiday a year ago we would just plod on but last year I just had to keep being optimistic but now I am on my own as his abilities are so limited so it is a mixed blessing. It’s a matter of taking the changes in your stride as they happen because you cannot foresee the future. I am still reasonably heathy enough to be living a normal life but I am feeling dragged into a disabled life. Sometimes I think he would like to see me as weak as he is but that’s silly.

I am pleased that this holiday was booked and that you are still taking advantage of it. You need a great break. When we had children we knew they would keep doing better, now we are all going backwards so difficult to plan.
Perhaps you are right that he would like you to be weaker, perhaps it would make him feel secure, rather like some women find when they get a job or lose weight, it is perceived as a threat as the wife may leave.
It is a strange condition the last day or so I felt my husband was much better, then last night he cope not work out something. Life is always unpredictable but for us Carers more so.
So enjoy what you can while you can. Xxx

 

[Thethirdmrsc]

I found a free course on the OU called designing space for dementia care, all about how spaces and places affect the PWD. There is also a paid one that I would like to do. My problem if you like is how not to answer back. It’s all very well the books saying go along with things they say, but sometimes I can’t, so I need help and guidance on how to do that. One book I have is Contended Dementia, which speaks to the PWD and says don’t worry, you will be looked after. Fine in theory. We are off in our Campervan next week for a few nights, and as long as I get a pitch near the loo, I’m happy, otherwise I have to go with him so he doesn’t get lost. I dread that one day I will see him come out of the toilet block, naked with just his wash bag, calling for me. Oh the shame.

 

[Grahamstown]

Perhaps you are right that he would like you to be weaker, perhaps it would make him feel secure,

I think you have a point there. Who knows what goes on in his mind? Perhaps he thinks that if I am with him all the time and not able to go off on my own, he would be sure that I shall always be there. I almost feel like a prisoner or that his dementia is exerting a kind of coercive control. He is getting very clingy and constantly wanting to be reassured and given permission to do anything, not that he does much at all.

 

[AliceA]

Sounds like a vague sense of insecurity that he cannot understand so he is looking to anchor to you. You are the constant in your husband's life.
I deal with this by constant but quiet slow reassurance like popping a bubble when I see it. Sometimes he just looks at me, I feel he wants something I cannot give him. It must be a scary place to feel insecure but not understand why.
It is a very fine balance of wanting security and also independence. I realised again the other evening when my own was looking for a programme on TV, he had the wrong day. When I suggested an answer I noticed he tightened his lips so I just backed and said these things are so complicated these days and that I get quite muddled. He relaxed at that. We decided to watch something else and try again tomorrow.
I realised once again, how much his mood echoes mine, I seem like a mirror. True, I feel I might shatter sometimes!
Babies pick up on body language, I think with this illness it come to the fore again. I feel I just have to try and go into a lower gear to negotiate.
Going into respite is a big thing first time, I am looking for somewhere so that I can ease him in. I am hoping I have found somewhere. A case of not counting chickens!
As you are going away just try and relax, there will be nothing you can do. Do you think you could prepare a little surprise for the home to give him, a card of a bar of chocolate etc. You know him and I don't, just an idea.
Just enjoy the rhythm of the cruise. X

 

[Grahamstown]

Much of what you say mirrors my feelings and experience @AliceA . This is where my personality butts up against the demands of the disease which seems at times like that of a baby sucking the life blood from its mother. I was talking to a young mother at book club last month who was still feeding her baby boy at 10 months and felt like that. Although 10 months is not late for breast feeding, she felt that she could not satisfy the demands of her son, was being drained and was going to discuss weaning with her health visitor. I wish we had a health visitor for people who have dementia.

I watched the Dementia Choir last night and it was very moving although I did find the relentless laughing, smiling and upbeat mood a bit too much but it would have been no good reflecting the reality of what I often read on TP. What struck me was the huge range of dementia in age, experience and symptoms. No one is the same, all have different expressions of the disease and none mirrored my experience at all. The brain scans were very interesting and I wish we had the resources to scan the brains of people who have been diagnosed, maybe once a year to help explain to those looking after them what is going on and relate that to the symptoms. We struggle to try and understand what is going on in their heads and I just wish there was something more illuminating to help.