Very, very sensitive, and gets really upset.

[LadyA]

William has I think taken another downturn in recent days. His speech has gone really bad - he can't string a sentence together at all. Although having said that, last evening, when I showed him my new Bible, which has large, bold print (my failing eyesight!), because I was going to read him a bit before he went to bed, he gob-smacked me, by taking the Bible and reading an entire chapter, perfectly well, without even hesitating!! Granted, he was a church minister for 55 years, but what I mean is that he can't speak coherently, and he doesn't read at all anymore - but this he could read perfectly! He didn't even stumble once. It brought tears to my eyes. Anyway - that apart, he has gone down in other ways too.

One thing - he has taken to being very very sensitive, and easily prone to tears. He is very sensitive to "atmospheres" and tones of voice, expressions etc. Like this morning, I was getting ready for our daily outing, and he was pacing up and down outside the bathroom door - really irritating! When I came out, I (ok, a bit testily!) told him that it was very annoying to be hassled like that, and he mustn't keep pacing outside the door when I'm getting ready - it's not like we are in any big hurry! Anyway, off we went, and about an hour later, he started crying in the car. He couldn't stop! He cried and cried and couldn't tell me why - just that he felt upset. This went on all day - finally I worked out that it was because he thought I hated him, and was furious with him and everything was just horrible and awful in his world! This kind of thing happens more and more frequently these days - and usually with no reason. He often mis-interprets something, like dau tends to always go off when she gets in from work and yakkity-yaks in a very stressy voice - on and on and on! He picks that up, and it upsets him. And I keep telling her, but she just doesn't get it! And other people, who (because of his deafness) tend to raise their voices to him, he comes to me after and tells me that they were "furiously angry" with him and shouting at him.

Sorry for rambling (she's at it now! But at least he's in bed!). But what's really upsetting me about this is: If he gets so totally devastated by me being slightly impatient now and then when hurried and hassled, what if he ever has to be in hospital, or in for respite (if I get sick or anything) and I'm not there to keep an eye? I've seen and heard the way the overworked staff at the big hospital here (who are not trained for working with elderly vulnurable people, never mind people with dementia - even people who are slow or deaf get short shrift). I just find myself getting all tearful and upset at the very thoughts of him trying to cope in that situation without someone to make sure no-one shouts at him, tries to hustle him along, etc. etc. It's one of the reasons I bounce him to the GP if I even suspect he might be getting an infection - and the GP is just as anxious as I am to keep him out of hospital.

There's no answer, and nothing I can do other than what I am doing - just needed to get that off my (ample!) chest!

 

[jtc]

you sound like you are doing great in the grand sceme of things...I was in a house today and they were planning christmas ....every one was saying what they would like to eat apart from the lady with dementia...she will have the leftovers apparently

 

[jenniferpa]

I'm not saying that this will not be a problem, but do you think he might be more upset if he thinks his nearest and dearest (i.e. you and your daughter) are upset with him than he would be if it was someone who he didn't feel close to?

 

[jtc]

I would like to say...live in his world..(it's probably a lovely place to be) be there with him!! hopefully the rest will change....it's always the ones who are doing their best that are made to feel guilty...just make sure you never feel like the ''professionals'' should be doing more

 

[lin1]

Hello Lady A
Sorry to hear this
I had to be careful with mum as she got angry or upset, more often angry than upset if their was ThAT tone in my voice

I am wondering if William could be suffering from Depression ? if William is on Anti depressants already , the dose or med may need changing so do have a word with his gp, consultant etc

My mum would cry buckets till we found an anti D that worked for her

 

[jenniferpa]

I would like to say...live in his world..(it's probably a lovely place to be) be there with him!! hopefully the rest will change....it's always the ones who are doing their best that are made to feel guilty...just make sure you never feel like the ''professionals'' should be doing more

Nice idea if you can manage it - not so easy when you are living with it 24/7. This is the difference between being employed in the field and living with a loved one with the disease.

I'm not sure what "just make sure you never feel like the ''professionals'' should be doing more" actually means, to be honest. Sometimes professionals can't actually do more, but sometimes they should be doing more.

 

[garnuft]

I wonder LadyA if perhaps he senses the tensions rising in the house and as a sensitive man, is afraid of what it means? If your Daughter is intolerant, with my children I would make them behave or move out. It is not all about individuals and kids shouldn't always come first. And in my opinion if they are adult, there is no excuse. Don't be afraid(says me who has never entrusted her son to the State) of help. You can watch, supervise, dictate and withdraw. Help can be a daunting hoop to jump through(I am beginning it after 25 yrs) but a saviour too. GwenX

 

[stressed51]

Hi Lady A, could he be suffering from depression aswell? My OH would get very much like this and very upset and crying over the slightest thing (slightest to me, but in his disordered thinking not so slight) this stage does seem to pass eventually, but I know everyone is different, you sound like you're doing a very good job with him and doing all you can

 

[LadyA]

It's not that dau is intolerant Gwen - it's that she is just a stressy type of person. She has a stressy job (she works in a community childcare facility, with two-year olds - the kids don't stress her at all, but the bitchiness of the staff does!). And she's waaaayyyy over-qualified for the job, she's actually got a higher Degree than the Manager of the place - but with the recession, is lucky to have a job. She's brilliant with kids - just doesn't haven't a clue how to handle William. ANd part of the problem, as i said, is his deafness - and she has a light voice, which is higher in pitch and tone than mine, so he can't hear what she's saying - she raises her voice, so she's shouting! And I've been trying to get some help - I have a Home Help from the Health Service two hours a week. She does basic cleaning. They don't provide anyone to do sort of "company keeping" a person with Dementia. There's nothing like that here, except from either the Carer's Association or the Alz. Society. I've gone to both of them, and the Carer's Association don't cover the area I live in at all, and the Alz. Society have no workers available right now, but I'm gone on the waiting list. I'll have to hire someone privately anytime I need to go out for a bit, as I do on the two mornings a week when I go to work for a couple of hours. It costs me more than I earn, but is worth it to see someone else!

I think what's happening with William is that all his adult life, he was a very unemotional type - at least on the surface he was all jolly, cheerful, woo-hoo, happy-go-lucky, no-problem-too-big type. But underneath he was still this emotionally scarred, terrified little boy still. His dad and grandad were both alcoholics. The fear would come out in ways though - like he could never hold on to a penny. It was as if he had to spend it quick, or it wouldn't be there! Then in adult life too, he was a minister in one of these very very conservative type American churches. And in William's mind, as long as everything appeared fine, his family looked perfect on the surface, no-one got wind of any rows in the family etc. - then that was what mattered. He was very highly thought of - and very well known. But he was living in a sort of fantasy. He would go from pursuing one interest obsessively for a while, to another. I think maybe now that all the peripheral stuff is gone, his emotional life has caught up on him. The last year and a half, he's been a much nicer person than he used to be, all his control-freakiness has gone.

He might be depressed. He's on 200mg of Trazodone (Molipaxin) a day though. We are back to the Clinic on Monday (fingers crossed I see the Consultant and not his registrar!) as I have a list of changes in William I need to discuss with him! It's only when I think about those changes, I realise how much he has gone down in the last two months, since our last visit.

 

[Izzy]

Nice idea if you can manage it - not so easy when you are living with it 24/7. This is the difference between being employed in the field and living with a loved one with the disease.

I'm not sure what "just make sure you never feel like the ''professionals'' should be doing more" actually means, to be honest. Sometimes professionals can't actually do more, but sometimes they should be doing more.

I agree totally Jennifer. I tried my best with the contended dementia approach with my mum but failed miserably.

From what I read on this forum there are many instances where professionals should be doing more.

LadyA you've made me think about my own tone of voice. I think I often snap at Bill and although he doesn't cry he does look sad. He's never lost his temper with me in our 33 years of marriage and he deserves more of my patience now.

Thinking of you. x

 

[LadyA]

Well that's it, I think as dementia progresses, their needs change, particularly when vocal communication is not as good. William always hated being touched or hugged. Now, he needs constant, reassuring touches - hugs, pats on the shoulder, a touch on his arm, or a couple of times a day, I massage hand cream into his hands which get very dry.

 

[angelface]

Could your dau consider treating her dad a bit like she treats the 2 year olds?

I really don't mean this in a demeaning way (Don't want to offend!), but I have worked with young children most of my working life. I know dementia is different, but I have found many of the skills I learnt with children have helped me relate better to my aunts with dementia.

My OH could not deal at all, until I explained to him that he needed to think of my aunt as having 3 year old type skills.

Gill

 

[Butter]

I don't see how you could be doing more. Your own sensitivity seems to be tuning you in to the whole picture: you convey a rounded picture, to me anyway.
And I don't see how you can not be testy, sometimes. Izzy says she has been made to think about her own tone of voice - but none of us can exert total self-control in a domestic life (at least I don't believe we can).
There was a wife on here a while back describing her silent and withdrawn husband. A daughter came on and talked about ways she might stimulate him with conversation. It seemed to me a good example of how impossible it can be for a partner - a 24/7 partner - and how unlike the parent/child relationship. The wife was so upset by the implied criticism of her.
These leads me to my mantra: looking after yourself is as important as looking after your husband - it seems he is no longer able to keep an eye on you. So I can imagine your daughter (with all her charms and foibles and needs) is a major life-line. I expect she knows that. It sounds a pretty good set up and as if you are all managing very well. But , goodness, isn't it hard.

 

[Helen33]

Dear Lady A,

Your post rang some bells with me. My Alan lost intelligible speech and language and I discovered that he also lost the ability to understand speech and language directed at him. He became very sensitive to body language and atmospheres. During this time Alan changed tremendously. He went from being a very 'typical English male' to a 'very sensitive male'. Most people actually preferred the latter. Alan would cry very easily but I always thought that he actually had a lot to cry about in reality. He had lost his world and hadn't a clue what the matter was because he couldn't really understand what was being said.

There were times when I got very angry and frustrated, especially towards the end when things became so much worse healthwise and my stress was off the scale. I console myself with the fact "that I could have been a whole lot worse under the circumstances". I always used these incidents as pointers in that if it happened more than a couple of times in a week then I needed extra help or something needed to change. I was always aware that it could spiral out of control and that would have been devastating for us both.

But what's really upsetting me about this is: If he gets so totally devastated by me being slightly impatient now and then when hurried and hassled, what if he ever has to be in hospital, or in for respite (if I get sick or anything) and I'm not there to keep an eye?

I have been doing this myself recently, Lady A and have decided that the best way of dealing with it is to concentrate on the present. I actually discipline my mind not to go back or forward but to live in the moment - it helps me but it may not be helpful to all.

Love

 

[LadyA]

Angelface - of course she treats/speaks to him as she would to a child! She speaks to me as she would to a child! And treats me accordingly at times - and she gets very short shrift I can tell you! She simply does not get the whole thing of having to s-l-o-w -r-i-g-h-t d-o-w-n - not only in speech, but I find that movement, everything - all goes very much better if everyone slows down and moves/speaks etc. much slower and more gently around William. Zzzzzzzz!

 

[Butter]

One of the problems of being a child of the situation may be the difficulty of grasping the fact that parents are not necessarily thick. They may just be getting old.

(I do NOT mean you are old - Lady A - simply you are older than your daughter .....)

 

[LadyA]

One of the problems of being a child of the situation may be the difficulty of grasping the fact that parents are not necessarily thick. They may just be getting old.

(I do NOT mean you are old - Lady A - simply you are older than your daughter .....)

And of course, being of the younger generation, she knows everything! Yes - I remember thinking the same way about my own parents! How they couldn't possibly know how things were!

 

[Butter]

Fortunately, we are able to help our parents along the way ..... it's amazing how much they can learn from us. How would they manage without us?