And so it goes on...

[Grahamstown]

The Understanding Dementia course continues to be interesting. I particularly agree with the discussion about care at the end stage of this disease. The comparison was made about palliative care for cancer sufferers in the early years being poorly carried out, and the state of palliative care for dementia patients being similarly not very well developed now. Comfort and pain relief are priority and unnecessary interventions and treatments should be avoided. I am finding the course very thought provoking and slightly depressing as the full extent of how little we know about the disease and how to treat it become apparent. We carers at home are an amazing lot, carrying out our tasks for our loved ones with little training or professional support except in emergencies but left to our own devices to sink or swim. If it wasn’t for this website I dread to think of the even more distressed state of many carers.

 

[Duggies-girl]

The Understanding Dementia course continues to be interesting. I particularly agree with the discussion about care at the end stage of this disease. The comparison was made about palliative care for cancer sufferers in the early years being poorly carried out, and the state of palliative care for dementia patients being similarly not very well developed now. Comfort and pain relief are priority and unnecessary interventions and treatments should be avoided. I am finding the course very thought provoking and slightly depressing as the full extent of how little we know about the disease and how to treat it become apparent. We carers at home are an amazing lot, carrying out our tasks for our loved ones with little training or professional support except in emergencies but left to our own devices to sink or swim. If it wasn’t for this website I dread to think of the even more distressed state of many carers.

I am with you there @Grahamstown This morning I have got dad out of bed, dressed him, given him his medication and breakfast, done his washing, hoovered his bungalow and gone outside to fix his conservatory guttering that had blown out of the plastic holders and was threatening to come down completely in the wind. Next I am going to clean his bathroom (really must be done) and tonight I will give him his dinner, keep him company watching rubbish TV, put him to bed and then probably have to get up at least once to take him to the bathroom. Last night I found him wandering in the kitchen looking for the toilet which is a bit worrying. At least he has a bungalow and his bedroom is opposite mine so he can't go to far. I also have to remind him frequently where he is once it gets dark.

Talking point is a godsend as far as I am concerned.

 

[Grahamstown]

Talking point is a godsend as far as I am concerned

Isn’t it just! What a wonderful carer you are but I know it’s because of your love for your Dad. Even so you have become very skilled in dementia care which I am slowly learning. I only realised that was what I am a year ago and have needed all the help I can get to avoid anger and frustration. It is a skill that people study and take degree courses to learn how to do it and we have to do it cold as you might say. My best wishes to you x

 

[Grahamstown]

It has been a calm week but I got very cross yesterday with his ridiculous habits and confused ways much to my shame. I had got everything ready to leave him over the lunch hour, with my cleaner here to make sure he is alright, and walked to and then chaired the book club meeting, walked back in storm Gareth, got cold and wet and took time to warm up. So I was not able to tolerate stuff in my normal way. Leading a normal life and dealing with dementia are not compatible!

 

[Grahamstown]

Yesterday was a bad day for me because I couldn’t keep patience. After getting up late, a trip to the barber exhausted him. He said he could walk the half mile and back, which he did even though I knew he shouldn’t. Then he chatted to the barber, talked about what he did with himself now he was retired, all no longer true, and then spent the rest of the day confused, exhausted and pathetic. It really gets to me seeing him just sitting in his chair doing nothing and I get very irritable. Listening to him talking to the barber was excruciating, knowing what he is like all the time, but it was also a heart rending glimpse into how he is trying to rationalise his life now. His inner world is unknowable and quite unrelated to our external life together now. His amount of self deception is staggering because he tries so hard to appear and sound like a normal person with other people, on the telephone to family and friends, while with me he is the opposite. So this disconnect between the world he tries to paint and the one I experience is slowly driving me mad. Yes it was a bad day for me yesterday but he was the same as usual.

I have finished part 2 of the Understanding Dementia course and it’s clear to me that he is now experiencing four out of the five dementia areas or domains as they are called, namely memory loss is awful, ability to function is declining, physical mobility is deteriorating, and behaviour is obsessive. He doesn’t have psychiatric symptoms thankfully, it’s me who has those (joke I hope). I am going to my U3A meeting this morning, my last of this kind as I am giving this up and our son is coming for the lunch hour. I just hope I can stay cool today. If he does very little it will be alright.

 

[Grannie G]

I feel for you @Grahamstown . Your post brings back so many memories of this stage.

There is a big difference between what I know now and how I feel, in comparison to what I knew then and how I felt.

Is there any way your husband could attend some local provision, on the pretext of it being a `club`. Perhaps there he would be able to tell his tales and you would be able to have a break.

 

[canary]

Listening to those tall tales is indeed heart wrenching or, at times, amusing. He is not doing it on purpose, being in denial. or self deluding, though, @Grahamstown . These confabulations are a result of the memory loss - the brain is filling in the gaps with false memories that to him are indistinguishable from the real thing. So he really and truly thinks that this is what he has been doing.

I do wish the "host mode" didnt leave them so tired though, I have had my cleaner this morning, OH appeared bright and breezy all while she was here and he is now asleep on the sofa

 

[jenniferjean]

My husband has had few mobility problems. If he was out too long he would lean to the left. He can't walk on rough grass or uneven ground. He can't use escalators. But that's about it.

Then yesterday while we were out in that strong wind he suddenly stopped, clung on to a fence and refused to move. I waited a while and then managed to get him to cling on to me, but it was a slow walk to the bus stop for the return home. A lady at the bus stop watched and said afterwards that she was about to come and help me. In a way I'm glad she didn't as my husband would have been horrified. I suppose this means now that I'll have to watch the weather more.

 

[Grahamstown]

Is there any way your husband could attend some local provision

I have been in contact with such a place and I had a long discussion with a very sympathetic person who in the end felt that their place could not fulfill his needs. I agree actually but recently I have had an offer to take him out from one of his colleagues he has known for years. My husband said he didn’t want to but I have had a discussion with the friend and we have agreed to just do it, when we both get back from our holiday. Always helpful discussions on TP and the voice of experience is so reassuring because it is based on the reality of living with a PWD.

 

[Grahamstown]

These confabulations are a result of the memory loss

Thank you for this reminder. I know from other posts about ‘host mode’ and ‘confabulation’ but you forget until it happens in your partner. I do find it difficult to accept these behaviours because they go against everything we are brought up to believe is correct behaviour, and to accept it as being his normal feels like giving in. In other words it’s like colluding with it rather than correcting it. No answer I’m afraid but to gradually get used to it.

 

[Grannie G]

agree actually but recently I have had an offer to take him out from one of his colleagues he has known for years.

That`s really kind and I hope it works out. Have a good holiday.

 

[canary]

In other words it’s like colluding with it rather than correcting it.

Yes, that is indeed what you have to do (sigh), but its not failure - it actually takes emotional strength to be able to do it.

 

[Grahamstown]

Yes, that is indeed what you have to do (sigh), but its not failure - it actually takes emotional strength to be able to do it.

Ooff and how! It goes against my every instinct, partly because I have a very good memory even if it is getting a bit more rusty around the edges. Perhaps one has to role play and pretend? I guess I have struggled with this aspect of dementia care all along and it’s getting worse. I don’t mind filling in the memory blanks but it’s the fantasy world that he describes to everyone else that is soul destroying because it makes you look like a liar especially to his sisters who seem to have zero sympathy or experience to go by and feel that what he says is true and that I am exaggerating even if not lying. I had a long conversation on the phone with one sister who monologued most of the time about her sister-in-law and her woes, even though I rarely see this person. Yes she has had to endure the sudden loss of her husband two years ago to a heart attack, and now I feel how lucky she is, not a thought I could share except on here. The sister has this way of speaking that doesn’t allow you to be honest about her brother, she doesn’t want to know, so no support there even though she is constantly saying they are thinking of us. The other sister used to call every week or two, now no longer calls even though we said that we would talk regularly because it meant a lot to her brother, so I think the same about her, thinking of us and that’s about all. I feel quite hurt by this for him although he never mentions them now, unlike before. I have gone on longer than I expected but obviously it was niggling away at me so best out. Families!

 

[Grahamstown]

The power of TP. His overseas sister just sent a message and as she was online I video called back and she had a ‘talk’ with him which told her all she needed to know. She has her own problems but adores her brother so very hard for her.

 

[canary]

Yes, that is indeed what you have to do (sigh), but its not failure - it actually takes emotional strength to be able to do it.

It suddenly occurred to me that you might think I was sighing at you - I was not. I was sighing at the situation that makes it necessary. Someone on here likened it to an excersise in improvisational dramatics! My specialty is neutral vocalisations - Well, well....... Really?......... you dont say?.......... that must have been fun...... or (alternatively) How annoying..............


So does this sister now have the beginnings of an understanding of what dementia is like? Or is she back in denial?

 

[Grahamstown]

It suddenly occurred to me that you might think I was sighing at you - I was not. I was sighing at the situation that makes it necessary. Someone on here likened it to an excersise in improvisational dramatics! My specialty is neutral vocalisations - Well, well....... Really?......... you dont say?.......... that must have been fun...... or (alternatively) How annoying..............


So does this sister now have the beginnings of an understanding of what dementia is like? Or is she back in denial?

I knew exactly why you wrote ‘sigh’ because I say that too. I also use ‘um’ ‘really’ and all those things. My daughter and family came over and I did make the right decision, he is not good today. My daughter understands how emotionally and intellectually sterile our lives have become. A normal conversation is to be treasured. His sister is now in no doubt about his condition having tried to have a conversation with him. Sad but necessary and how glad I am I spelled it out in my thread so that I knew what to do when she finally sent that message.

 

[Grahamstown]

Another milestone today when for the first time he didn’t feel able to go to our sons and family for tea. So for the first time I went alone and felt like a ‘widow’. A horrible feeling and so sad. I got back and he was still in bed, came down about half an hour after I got home but said absolutely nothing, he has no idea what has gone on this afternoon. I guess I am lucky to be able to pop over to family for a short visit so that I don’t leave him too long.

 

[jenniferjean]

I am cooking a roast dinner today and left the kitchen to go to the bathroom. I was only gone about five minutes. When I went back to the kitchen my husband pointed to the oven control and asked "is that right?". I said "What are you doing? You've got it on grill". So he asked "what's in there?" I told him it was his dinner to which he replied "Well I haven't touched it. It wasn't me."
I'm assuming he was trying to turn it off because he saw no reason for it to be on.
What next I ask myself.

 

[Guzelle]

I would keep going to America for as long as you can especially if he enjoys it. It must be lovely for you seeing your grandchildren too,

 

[Maryland]

I would keep going to America for as long as you can especially if he enjoys it. It must be lovely for you seeing your grandchildren too,

Thank you gazelle. I finally plucked up the courage and booked. We have travel insurance which we can claim if something happens and we can’t go. The grandchildren get really excited when we go and the two big ones do understand, the two younger ones think it is funny when they find food in different cupboards but thrust they don’t mean any harm and it gives me a break once I get him there