And so it goes on...

[Mudgee Joy]

Yes it's important to have it up your sleeve. I had one night away in October with much planning - it turned out he was relaxed at home with his favourite carers and I had a very poor night - but knowing it is possible is a real relief !

One friend at our carers group says her husband likes his holidays at respite !! I don't think I could get it that good ! But would be nice...

 

[Grahamstown]

The doctor suggested that for my husband’s particular case a carer at home world be a good idea. I have checked the nearest place out so when I need it I can decide which would be best. I was talking to an elderly gentleman today and his wife had a stroke, vascular dementia and died earlier this year. On talking about dementia he said that he thought people were afraid of people with dementia because they might attack them. I really tried to disabuse him of that because it is a) not true generally and b) is no way to understand the disease in a meaningful way in this age of increasing incidence. More understanding is what is needed not half baked opinions.

 

[AliceA]

We seldom use the word, my husband said it sounds as if it means demented and sent to an asylum.
We just refer to a brain condition he is happy with that. We do use it when wanting professional help but with discretion. Fear is the greatest problem.

 

[Grahamstown]

We seldom use the word, my husband said it sounds as if it means demented and sent to an asylum.
We just refer to a brain condition he is happy with that. We do use it when wanting professional help but with discretion. Fear is the greatest problem.

Yes I absolutely agree and never use the word at home but this elderly gentleman is of the generation who does and doesn’t really understand and has his own opinion which is quite old fashioned. I was quite surprised by his strong reaction. This is what we are up against in the wider world where people don’t like to talk about it, a bit like cancer was a word that was never used, and I tried to change his attitude. Not much success I don’t suppose even though his wife had had vascular dementia, I think he just thought it was a stroke, which results in brain damage anyway. When I asked him it turned out she had had a lot of small TIAs. I knew her and had realised she had some dementia. But a brain condition is correct anyway.

 

[AliceA]

Same with the word carer, I do not see myself as a his carer, however I do use it to stress what I do, I will use 24/7 carer to get the help my husband needs. Sometimes his looks are deceiving, he has a big happy open face and a small shrunken one. Not even sure if that is true but it is how I perceive him, his emotions and mood.
When I talk on the phone and I know I will use these words, I tell him and apologise but say I am just trying to get the help he/we/I need. He accepts this. I can seldom phone out of his earshot, I would if I could.

When I can talk to someone, if I feel they are listening I do try to educate, erase the false ideas. I try to explain the affects depend on the type and also the area of the brain damaged affects behaviour and outcome etc.
Horses for courses.
I do not moan but point out the positives. E.g we are lucky because it has nor affected etc. etc.
My grandmother had a series of strokes in the sixties, we were close, she used to call me by the wrong name. The word dementia was never used.
I am wary of labels, people are so different. I feel labels confine people to a role and they play it out subconsciously. Tell a child they are helpful and they become more so, naughty children are the same.
Labels seem to give permission.

Sometimes I just try to blind them with science to stop unwanted, impractical and ill informed advice!
Other times I just want to curl up and weep.

I do feel for you, we are both juggling with too many balls! Xxx

 

[Grahamstown]

I am with you on all this. I only use these emotive words in certain circumstances but at the same time we shouldn’t shy away from the commonly used words to describe this dreadful illness. I usually say that he has an illness to my husband when he is feeling bad. When he is feeling good it doesn’t apply. He is so like your husband, you would never know unless you were with him for any length of time. When we went to the Care Home last week, he was so his usual self that when I mentioned to the person who was showing us round that he was well but had some memory loss, he said that his memory was perfectly fine. We got home, he was exhausted and spent the rest of the day in bed. He can’t remember the visit or the conversation at lunch yesterday which he could hear but not properly which I feel protects him from the pain. The other thing that happened last night was when I gave him a drink of low alcohol wine, he then wanted another so I opened a bottle of no alcohol beer and after that he said could he have another glass of that wine. I nearly choked as I realised that he couldn’t taste what he was drinking. He can’t smell either and I believe both these sensory losses are part of the disease. My brother is coming for the night today and he is already worrying about it. Take care xx

 

[Mudgee Joy]

Our friends and relatives have varied attitudes from being scared of him, to just not noticing .
- like you both I don't use the word dementia if I can help it - "cognitive impairment" is my substitute - many people ask me if my husband will know them ! And mostly he knows them as much as he ever did - we all forget names - but it's more supple than that - it's the strange disorientation, the mixed up of other news and the 'here and now' reality; the slowness and lack of ability to make plans.
On the alcohol side I have cut down a lot - and recently out to dinner my friends were aghast when I topped the wine up with a lot of water - I just smiled and said its a water-shandy !
We had a carers Christmas lunch today and one lady , whom I had felt sorry for , who has two parents with dementia - spoke so unkindly to them I was really a bit shocked. I guess we're all different ?
Must be cold over there - very hot here ! 36 C today

 

[Grahamstown]

Three good things have happened. First my brother came to stay and has said he will come at the drop of a hat to give me a break if it comes to that. He does have a long way to come so I wouldn’t ask him lightly but he did spend the 24 hours with us required to see how much my husband has deteriorated since we visited them in August, for only a few hours. Second we took him to our nearby pub for supper which has been so helpful with my husband’s drinking issue. As we left the landlady rushed up to me and said that they were having an open couple of hours for invited guests on Christmas Day 12-2pm, and we were invited if we would like to come. How lovely is that? Finally I went to the doctor for my check up today and got a clean bill of health and told her I was not as fit as I had been a year ago, because in the meantime my husband had been diagnosed with Alzheimer’s disease. She was immediately helpful and looked up some carer information, and was very understanding. So was my brother so I feel a bit more cared for and less alone now plus have a suitable place for him if it is needed.

 

[Mudgee Joy]

That's lovely news @Grahamstown - I think our siblings can be great helpers - I would call on my younger sister if need be.

Yesterday evening I was thinking my husband was rather astute - speaking of this and that and being fairly lively !! I noticed it was after 9pm so I suggested he should be thinking of shower and bed. He looked a bit downcast and I asked why. 'aren't we having dinner first? - we had finished it 2 hours before - I told him we had had dinner - but it must have been a very ordinary meal if he couldn't remember it - he thought that was funny which was good and set out to 'find' a shower !
Some days we manage better than others. Night all , mud joy X

 

[jenniferjean]

My husband has no concept of time of day either. Often I can be thinking it's time for bed when he suddenly asks when are we having dinner.

 

[Grahamstown]

I hit a new low this morning out of the blue, he can no longer make a cup of tea correctly, something he has been able to do all his adult life. Also he weighed himself this morning with my help and he has lost more weight even though he is eating well. He said that is a good thing, he has always had a fixation about his weight, and was almost anorexic in the few years before he got ill but he was the right weight then. I helped him shower and put clean clothes out and suddenly realised what I could not handle. I was a nurse and midwife and could do anything for the people in my care, but because it is my husband who used to be so able it just floors me. So a little grieve here helps me to pick myself up and carry on. I have helped him apply for Carers Allowance which everyone can receive regardless of income, and it was granted immediately so I am so glad we did that. I am going to need a bit more help now.

 

[Mudgee Joy]

Dear @Grahamstown - he may pick up tomorrow or in an hours time or, in a few days - ups and down. But please don’t wait to get some time out !! Take some now - arrange a night off or an afternoon as soon as possible and repeat it - he will be better for the break too- I promise you - everyone needs some time to just be.
And with that medical check - is his blood flow normal !? After discussions with our doctor my husband who has vascular dementia has one small “aspirin ‘ each day (brand ‘Cartia) which helps blood flow a tiny bit- I think it helps brain)
So hold up and organise time off /out even if you don’t need it !! That’s the best time ! Before you need it ! Hugs and love MJx

 

[Grahamstown]

Dear @Grahamstown - he may pick up tomorrow or in an hours time or, in a few days - ups and down. But please don’t wait to get some time out !! Take some now - arrange a night off or an afternoon as soon as possible and repeat it - he will be better for the break too- I promise you - everyone needs some time to just be.
And with that medical check - is his blood flow normal !? After discussions with our doctor my husband who has vascular dementia has one small “aspirin ‘ each day (brand ‘Cartia) which helps blood flow a tiny bit- I think it helps brain)
So hold up and organise time off /out even if you don’t need it !! That’s the best time ! Before you need it ! Hugs and love MJx

I have called Care at Home and they are coming just after New Year. I think I can manage until then. I was exhausted after my brothers visit, much more than I expected because I had to deal with a fussing husband as well as help my brother learn about PWD. He too tries to be rational and hits a brick wall. Onwards and upwards. I was having to pick up on conversation which went haywire. I told my brother quietly to operate on a ‘need to know’ basis, only tell him at the time and what he needs to know for that moment. It makes you realise how bad things have got. Still looking on the bright side he can still do some things and always laughs, inappropriately in my mind, but still that’s ok. I meantime am crying.

 

[AliceA]

Yes, it creeps up, we put in 'balancing skills' automatically and it is only when we try to explain to others that we realise how 'uneducated' the rest of the world is. The lack of understanding. Coping with others is so tiring.

 

[Mudgee Joy]

On some ways they help themselves ! My husband is very good at relaxing !! Something I find very hard - obviously goes with the territory of carer !!
Soon to bed !!! Love MJ

 

[Grahamstown]

Oh dear, broached the subject of a little help to be with him from time to time and was met with strong resistance because he can ‘look after himself perfectly well’. Of course it’s me who needs the help not him so I shall just have to persist. I have bought him a new winter jacket today and that went ok but will he recognise it I wonder? His managing to look after himself did not extend to knowing which card to use for what.

 

[Duggies-girl]

Oh dear, broached the subject of a little help to be with him from time to time and was met with strong resistance because he can ‘look after himself perfectly well’. Of course it’s me who needs the help not him so I shall just have to persist. I have bought him a new winter jacket today and that went ok but will he recognise it I wonder? His managing to look after himself did not extend to knowing which card to use for what.

Dad got new socks and pants for Christmas because he doesn't seem to have any, or at least I haven't seen or washed any for months. I laid the new ones out on his bed so he can't miss them. I bet they disappear never to be seen again.

Dad also looks after himself perfectly well.

 

[Grahamstown]

It really helps to see you have experienced the same @Duggies-girl the ‘I can look after myself’ stuff, because it gets to me to me, to see this previously able man so weak and confused. I am starting to get despairing when we meet people we know out and about, which we did this morning shopping, and they ask him how he is, and he says fine even though he doesn’t know who they are in some cases and certainly not their name. Then they look at me and I avoid a direct answer and would like to scream he’s got dementia and it’s horrible. Especially when they inevitably ask if we had a lovely Christmas. We did have a reasonable time with careful management but not as it was before of course. I guess I am just at a low ebb, have been holding off a viral infection with paracetamol and First Defence (which is very good) all over Christmas without saying a word, just no point, he wouldn’t even realise and I certainly don’t want my children to be worrying about me too, no point. I am feeling better but I think you are left with a post-viral lethargy. Always feel better after a rant anyway.

 

[Duggies-girl]

It really helps to see you have experienced the same @Duggies-girl the ‘I can look after myself’ stuff, because it gets to me to me, to see this previously able man so weak and confused. I am starting to get despairing when we meet people we know out and about, which we did this morning shopping, and they ask him how he is, and he says fine even though he doesn’t know who they are in some cases and certainly not their name. Then they look at me and I avoid a direct answer and would like to scream he’s got dementia and it’s horrible. Especially when they inevitably ask if we had a lovely Christmas. We did have a reasonable time with careful management but not as it was before of course. I guess I am just at a low ebb, have been holding off a viral infection with paracetamol and First Defence (which is very good) all over Christmas without saying a word, just no point, he wouldn’t even realise and I certainly don’t want my children to be worrying about me too, no point. I am feeling better but I think you are left with a post-viral lethargy. Always feel better after a rant anyway.

Yes dads always fine, he tells everyone that he does everything. I think he really believes that he does. I find it hard when he does strange silly things. He has moved all his pot plants about today and they all stand in a bowl filled with to the brim with water and the bowl will stand on another upside down bowl or a biscuit tin. I try to ignore them but it is so weird.

A viral infection is horrible. I had the flu eight weeks ago and I am still coughing like mad. I thought about going to the GP but just presumed that it will go in the next couple of weeks. Well it hasn't so I will see what it is like next week or next year even.

Found dads new pants and socks in his wardrobe all neatly put away patiently waiting to be worn.

 

[Grahamstown]

Well done finding the pants and socks. I don’t think my husband would ever change them if I didn’t do it every few days. He used to be so meticulous too. That lingering cough is dreadful and I always resort to endless ways to control it especially at night. It lasts three weeks apparently.