too early for bed?

[aquilaboy]

Routine is everything

Hi everyone This is my second time of writing, and now only because the Alzheimer's Society sent me an standard email. I notice that most of the writers are women with husbands that have ftd. With me it's my wife who is now 64 but was diagnosed with Semantic Dementia four years ago, but I believe she has had it for 6 or 7 years.
Semantic dementia is the loss of understanding of words - both spoken and writen. She can now no longer read and has a very limited vocabulary. She understands only a little of what is said to her. However, routine and compulsion is everything. She has to go to bed at 10pm; must get up at 8am; coffee at 11am; lunch at 12noon; dinner at 5pm; cuppa at 8.20pm! She knits ferociously - all day if she can! She is also completely obsessed with the weather - no different i suppose with the rest of us!
However on the plus side she does like to go out to places although not to 'educational' places ie National Trust properties etc as she cannot understand and has no patience with the exhibits. I have just retired, the irony being that I was a journalist - a word smith! It's difficult having your wife there, but not being able to communicate with her properly - not being able to discuss things. I suppose writing all this is cathartic - what do others think

 

[jaymor]

I'm coming from the other side here. My husband is a non sleeper and has a 12 hour clock. Practically 24 hours a day to fill for me. Could never find anything to do between 1am and 6am that was quiet, having some consideration for neighbours. He was never tired and could not understand how washed out and utterly exhausted I was. He is now in a nursing home and his nightly pacing and wanting to do is taken care of by his 1:1 carer but unfortunately my brain needs reprogramming as it has forgotten how to get me to sleep again after years of no sleep. There were times when I just wished for a little time to myself even if I used it to sleep. Funny old life we lead as carers.

 

[seamble]

Remember that sleepiness may be a physical effect of the illness and that the symptoms often get worse in the evening when it gets dark. But how to cope? Part of the pain we all share is the sense of a loved person slowly moving out of touch, particularly for those of us who are the husbands or wives of people with Dementia. At some point one starts to mourn, different from but no less real than with a sudden loss of a loved one and similarly easing with time. The key thing is that one needs not only to care for that person, with their personality still there but also to find the courage and determination to care for oneself, to find interests and occupations to fill the growing gap. A small help might be to change your own routine, with more leisure in the day to relax with your husband, with the chores and personal business more dealt with in the evening when he has gone to bed. But more decisive is to find or revive the activities or hobbies which could become far more rewarding than the chores! You might think about going to classes etc, thus needing voluntary or professional help (or more of it) to sit with or care for your husband when you are out. We must not forget that we have the need for and the right to all the help that we can get. There are many sources of help, although perhaps depending to an extent on where one lives. The local branch of the Alzheimer's Society was very helpful to me. That is in addition to the Social Services with their separate,Carer's Assessment and a specialist NHS unit to which my GP referred us. There are others. I faced the common problem at one stage that my wife couldn't accept that she was ill or allow help into the house. All the more did I need professional help and advice! Amongst other things, it is no shame to ask for help with coping with one's feelings and sense of loss as well as with the practical problems. It is difficult to accept but one needs slowly to build a new structure for one's life, not by any means at the cost of one's relationship with the loved one but, in fact, likely to strengthen it,

 

[shep 44]

a big thank you

hi everyone,i have not been on here for a while and it was a lovely surprise to see all your replys,all very helpful and reasurring that i am not alone,i take all the advise you all give onboard.Me and my husband are going on a little seaside break soon ,just to weymouth for a few days,i feel that i want to try and spend some quality time with john while we can,i know i cant exspect to much and hope he will enjoy it,he lived there before i met him when he was in the navy many years ago,so he should,just have to take things slower than we did on hols before the ftd,i am alittle conserned that john is getting worse quite quick,but i mite be looking for things too much,once again thanks for the replys they mean alot sandra xx

 

[DASPO]

Until I saw this thread I hadn't realised that going to bed earlier than normal was common. My sister who has the condition has been going to bed around 8.15 or so for some while now whereas the normal time used to be 10pm. Not last even then. However we have both always got up at 5.30 to 6am which is early so I put the tiredness down to getting up early. Not only that but also down to the medication too and I actually believe that is the main culprit. She has several types of pill for high bloodpressure, underactive thyroid, agoraphobia and so on. Most of the tablets list tiredness as a side effect as does the Aricept of course. Given all that I was not surprised that she was tired and slept or dozed during the day and went to bed early. Other factors may play a part...boredom and stress etc even the darker nights.

That said she sleeps not too bad at night but is inclined to wake up early but then she did before she had this problem. Its just that the time has shifted earlier in line with going to bed earlier.

The only thing I am not sure of is that since increasing the Aricept to the full dosage she gets up during the night and ot just for a toilet break but because she thinks it is time to get up. This can be between one and three times a night. I usually wake up when I hear her moving around and get her back to her bed. There does not seem to be any ill effects to this though.

 

[Chrismitch]

Having a life

My husband sleeps a lot - no real routine, it varies from day to day. He feels safe there. He is also recovering from exhausting himself in the stressful situations he finds himself in from time to time.
But although it is a very sad situation can I encourage you to go out and do interesting things if your spouse/parent can be left alone? There will come a time when they cannot be left alone but if you can leave them for a short time, try and force yourself to go out to the cinema, an exercise class, dancing, evening class, anything to brighten up your life - you deserve it.

 

[gringo]

In my experience, going to bed early, is the least of it. When your partner has dementia of any type, eventually everything changes.

 

[Izzy]

Sorry I am so late coming to this thread. I must have missed it somehow. My husband us exactly as you describe. I have gradually adjusted my own evenings to fit with him. Most nights I go to bed with him unless it's exceptionally early. I have a sky box in the bedro and we watch recordings of programmes in bed. Not an exciting lifestyle but we're together. With Bill it's, I think, a mixture of tiredness and feeling safe in bed. At weekends I try to get out and about with him so that he's st least had some activity before he heads off to bed.

 

[patilo33]

Get an iPad

Hi Sandra
Yes, all change and more changes in the future.
My advice for you would be to get an iPad. It's been brill for me.
Mum goes to sleep downstairs at 7.00 and I go upstairs, get into bed with my iPad. Works for me.
even watch tv on I player on the iPad.

 

[jkt]

early bed time

hi again as some of you may have read in my last post my hubby has ftd newlly diagnosed,for the last week he has insisted on going to bed at 8pm,i say stay down with me a bit longer,but he wont have any of it,should i just let him go at this time he does toss and turn alot in the night but he stays there until 6-7am ish,i do feel fed up when hes gone to bed so early,everythings so different now,i feel good typing this as i know you are going through similar feelings and experiences,thanks in advance sandra xx

Hi Shep I know exactly how you feel my husband is in bed most nights at 7o'clock watching television ,he was diagnosed with vascular dementia 3years ago he is now 65 I sit on my own most nights and feel quite lonely, but what else can you do things are not going to get any better so you have to get used to it . I try and get out as much as I can hope you do.

 

[Jamjar]

going to bed early

Hi Shep 44 and other postees

I've only just caught this topic but my wife who is 65 is now an early-to-bedder. She does however have a good sleep generally and is awake around 7, sometimes earlier but nothing outrageous!. She used to read a lot but can't now and has never been a lover of TV so I sometimes think she goes to bed just to do something, though when I check on her after say 30 minutes she is almost always fast asleep. Oddly she seems most lucid and "her old self" when we first wake in the morning, but by the time we've dealt with getting washed and dressed she is more like the new person I'm still getting to know (she was diagnosed April 2011 but I think there were signs at least 2 years earlier). Anyone else noticed this ?

 

[rjm]

Oddly she seems most lucid and "her old self" when we first wake in the morning, but by the time we've dealt with getting washed and dressed she is more like the new person I'm still getting to know (she was diagnosed April 2011 but I think there were signs at least 2 years earlier). Anyone else noticed this ?

Hi Jamjar,
Yes, I have had the same experience with Sharon. Although as times goes on those periods of "old self" are getting shorter and shorter. These days, when they happen, they are fleeting - just a look or a word or two then it is gone; but I do treasure those moments.

 

[aquilaboy]

What's in store.....?

Have written on this thread a couple of months ago but am not sure if this is the right place for this question. What does the future hold? As my last thread said, my wife of 40 years has semantic dementia and has had it for about five years. She can no longer read or understand 75% of the spoken word. I have Googled this extensively - as I suspect all of you have. I have always believed calling a spade a spade and most sites claim that ftd is fatal - If so, how can it possibly be? Has anyone first hand experience? What are the stages? Are there stages? Nobody mentions life expectancy, so what is the truth?

 

[rjm]

Hi Aquilaboy,

I will attempt to answer your questions, but I am not a specialist - my opinions are only worth what you pay for them

Semantic dementia is one of the expressions of frontotemporal lobe dementia, commonly known as Picks disease. As are the other dementias it is a progressive neurodegenerative disease where the brain slowly atrophies away to the point where it can no longer sustain life. This is what makes it fatal, although other conditions, such as pneumonia, can often be the actual cause of death as someone weakened by dementia is more susceptible to them. Whilst "stages" can be described not everyone will experience all the same symptoms, and not necessarily the symptoms in exactly the same order. I prefer to think of it as a continuous process; from wellness, to having dementia, to a bumpy but always downhill slope ending in death. Life expectancy varies so much from one person to the other that I'm not sure much can be taken from the average numbers.

I hope you are both able to find some pleasure and happiness in the time you have left, no matter how short or long that may be.

 

[Smithy 56]

I am struggling at the moment as my mum has vascular dementia and wants to go to bed at 5 pm. She then gets up about 5 times eventually gets dressed then gets back in bed. My dad is 88 and finds it hard and gets on at her for getting back in bed. I feel for him as he is too hold to go through this.