Category Archives: General

Dementia: Finding Some Respite

General

I have sought advice about my wife taking to her bed today.  It is to let sleeping dogs lie and hope that her mind set changes soon.  Trying to shift her from being tired, or her leg hurting, would likely cause further distress for us both.

It is possible that the carer will be able to encourage her to become active tomorrow.  I have now decided on a change of plan and will go out shortly after she arrives, as I have one or two things that I need to get done.  When the eye brows get long it is time to get a hair cut and I need to return the alarm to CareLink.  I simply feel it is too risky to go out and leave M in bed at the moment.  If she awoke and found she was alone in the house then anything could happen.

It is never easy to get respite as a carer, because personnel are simply not available and finances are a hurdle that has to be overcome.  So I have to see my wife taking to her bed as an opportunity to have some respite.  I can have a bit of time to myself as she dozes and rests her leg.  When you are on call 24/7 you need to take every opportunity that comes along to have a break.

Dementia: Sorry I Forgot You Can’t Remember

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I have just committed the cardinal sin.  I have reminded my wife that she has dementia by talking of events from a week or more ago.  Not only is she struggling to understand what happened, she cannot accept that she has no recollection of Black Thursday.  I have also forgotten that her memory can falter and have failed to keep to my mantra of KISSS.

On that fateful night we suddenly had three new faces in our living room.  The Rapid Response Team had turned up to try to ease tension in the household  followed by a carer for an overnight sit.  This was a poorly handled approach to giving your truly a night’s respite.

The best laid plans eh …. At 5 pm we had been told that there were no carers available to stay with my wife so I could have a break for the night.  Shortly after 10 we had three additional support staff in the house.

In retrospect I should have let another sleeping dog lie and put Black Thursday down as a bad experience.  It is quite remarkable that I am still to receive any explanation or apology for the distress caused to us both.  Then to put icing on the cake I have mentioned it to M again early this morning.  I won’t share the detail but her incessant questioning about another woman staying in the house over night have been taxing; to put it mildly.  I am hoping that sleep will shift it from her mind otherwise I am in for a rough few days: all of my own making!

When someone has dementia : Keep It Simple Stupid and Short.

Dementia: Still An Uphill Struggle

General

I still feel the treacle is around and the uphill struggle continues.  It’s just been one of those days.  All my normal strategies to lift mood, or prompt some activity, have come to little.  My poor wife has eaten well and slept for most of the remainder of the time.

She is currently sitting in the dining room struggling to accept that it will be time for bed in an hour or two.  She thought it was morning and is very distressed that she is often confused between day and night.  Some say this is the most challenging time of the condition; when lucidity kicks in and there is insight that there is something wrong.  I am not sure what I can do to help as nothing I suggest has any impact on her distress.

I hope that this is just one of those days and tomorrow will bring a new dawn.  It is horrible watching someone you love so distressed and not be able to do anything to help.  Perhaps a hug might do the trick, as talking is not shifting her mind set.

Dementia: Like Walking Uphill Through Treacle

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One of our carers  likened recovery from a stroke to: walking uphill through treacle with snow boots on.  I am not sure what additions are necessary when dementia is also present: perhaps a blindfold.

I think we are on the lower slopes today and the blindfold is firmly in place.  Just to make it clear I am talking about me now – the carer.  My carefully laid plans have come to nothing and M is hiding in bed.  No matter what I suggest there appears to be no way forward with semantics and blocking the order of the morning, to any suggestions I make.  All I can do is hope that sleep is curative and the smell of lunch will do the trick.

Little point in going into detail it’s just one of those mornings.  Who knows what the afternoon will bring?

Dementia: Door Notes

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I have read a number of books on dementia and talked to many people about my role as a carer for my wife.  It would be no surprise to any reader of this Blog to realise that my priority is trying to minimise distress.  Sometimes I get it wrong, misread situations, and my responses to M are unhelpful.

I also try to guide other people, relatives and friends, on the best way to support M. Again I often get that wrong and my good intentions are misunderstood.

Yesterday I read a post on Talking Point that has the potential to help anyone who has  involvement with this dreadful condition.    I have managed to get her permission to add it to this Blog:

Door Notes!

I had spent almost 2 solid weeks of dementia around the New Moon and then sometime later I was better for several days straight! Oh Happy Days were back! I did a lot of deep thinking, because some of our 4 adult children are clueless on what to do. They ask questions (I have no answers when I’m “bad off”) and so they avoid us. (My opinion.)

This is what I came up with and taped it to my bedroom door so when you enter you can’t easily miss it. I left space where I or they can add more:

NOT IN RANDOM ORDER:

Don’t ask me if I have taken my meds or vitamins. Bring me water and them (IF) you know for certain that I haven’t, or that I need another one, now.

Distract me with something else. Even if it is just “busy work”. This may last well for 10 minutes or 2 hours then come up with some other distraction.

Have a list made up for distractions that have worked, that you’ve heard or thought of but haven’t tried.

Take your loved one a drive. (my favorite help)

Have your loved ones favorite funny movie to watch: over and over and over if necessary.

Don’t ask me any questions! None!

Let me talk if I want and DO NOT interrupt me while I’m talking even if I am not making sense or have the wrong word or name.

Let me wander around the house, or certain safe areas.

Let me cry.

DO NOT tell me that I “CAN’T” do any of the above. They may not seem to you to help but they DO help me! But if you can distract me into doing something else that is GREAT!

I may want to be alone: perhaps in my room. Or just alone while everyone is around me!

As a last result, for me, at this stage is, hold me and assure me that it will end. LIE TO ME!

This is THE most important thing I discovered when searching my mind: I am “homesick” for ME! I am all too aware in my most worst demented state, that I am not who I was. I may be homesick for my childhood and parents, pets, home. Or for being a Mommy to my babies. Or homesick for who I was in my career. Etc. I wander around; cry; search for ME! And you, my love, may never have even known the ME that I am homesick for, because we had never met then!

I hope this helps, I think it did my children. Jaffy

Dementia: Tiredness Returns

General

We have had quite a good day today without doing anything special.  We have been busying ourselves with normal domestic tasks and pottering in the garden. M seems to need lots of naps again.  She is on the sofa for the third time today and may now be down for the night.

Most people who have experience of dementia suggest letting sleeping dogs lie.  I can see the sense of that because every time my wife wakes up it takes her ages to come round.  She generally thinks it is morning; even if it is dark outside.  When she wakes she tends to ask me if I have had a good night’s sleep.

If she remains asleep until our bed time I will rouse her gently and nurse her upstairs to bed.  With care I can move her from the sofa to the bed.  Get it wrong then confusion, and distress, will confront us both as she tries to work out where she is.

I have mentioned before that we were warned that exhaustion is a common after effect of stroke.  It might also be a sign of further progression of dementia.  Rest is the only way that the brain can recover from the strains and stresses of the day.  Any brain that has faced the double whammy of stroke and dementia faces overload all day long: the only remedy is rest.

Dementia: Unresolved Grief

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I’m on the case early this morning trying to edge things in a positive direction.  What else can you do when your wife tells you she is fed up with not being able to do things that other people can do?  I didn’t think this was one of those occasions when changing the subject or diverting attention was the answer.  So I went for it and provoked further discussions on her aspirations.  It is possible, that once again, I misread her thoughts as it appears to have been a grief related aspiration: wanting to see her mother.

It is interesting that yesterday morning my wife was on a similar wave pattern.  She explained to me that she hadn’t slept well the night before because she had been thinking about her daughter who passed away a couple of years ago.  She was distressed that she couldn’t remember what D looked like and she found that really upsetting.  I listened for a while, shared experiences of my own, and talked of the happy times we had spent together.  I also reminded her of the photos that we had of D that could remind us of what a generous person she was.  I think I may have been closer to the mark yesterday.  Now I have an idea of what might have been going on this morning.

I think that M wakes up in the morning aware of the curse of dementia.   Perhaps her safety net is to focus on unresolved grief and there is a lot of that around..  Daily grieving becomes part of her psyche because she doesn’t know how to deal with the consequences of stroke: she just can’t bear to come to terms with it’s legacy. Some people would suggest that such denial is unhelpful.  However, I don’t think that taking steps to encourage her to face reality at this moment in time would be helpful.  For the time being working with my wife’s reality can only minimise distress and that remains my prime focus.