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My journey with Kate

Scorpio3537

New member
Jan 16, 2021
3
0
Hi All
My name is Robert my wife was diagnosed with Vascular dementia in 2014 we are both in our 80s in the early days her memory was not too good but we could manage ok but around 2018 she startes saying things like "i have had no housekeeping of you for 6 week"
and numerous other things at first i thought she was joking as i gave her her housekeeping religouslyand this use to start around 4 pm and she use to get a bit angry over trivial things also she started getting bad on her feet nearly falling she did eventually fall and broke her arm.
after that and an operation to set her arm she got a lot worse having hallucinations saying "whos that sat up there" no one says I, cant you see them you must be blind
I took her to the docs who gave her memory test again and said VD is getting worse but it may have been after effects of the anesthetic we cant give any medication for it.
Well to cut long story short when she gets up in a morning she is quite chipper and makes juvenile jokes sometimes sexual quotes then around 11 am its like a switch as been thrown and she starts when are we going home ,we are home says I oh no we not we at my mums house no we not, 5 secs later same thing must be 10 ,20 times what day is it .
She cannot rember a thing at night she packs things up into her handbag and says i want a taxi i will go to my sister she will look after me, her sister died 10 years ago it seems she is in the past
if i am in kitchen doing dishes or putting washing in she comes up behind me asking what i am doing if i go out which is only 15 min at most she says you have been 2 hours phrases that are all the same
Sorry for the long saga
I just wondered if anyone else as this type experience
there is loads more but im sure you get the gist
Thanks for reading
Robert
 

canary

Registered User
Feb 25, 2014
14,602
0
South coast
Hello Robert @Scorpio3537 and welcome to Dementia Talking Point.

Im afraid that all the things that you have mentioned are typical of mid-stage dementia. I dont have experience of hallucinations, but I can help with other things.

When someones short-term memory reduces so that it is almost gone, their perception of time becomes totally skewed. Without the memory of hours, days and weeks passing some things (like you nipping out for 15 mins) stretch out interminably and seem to go on for hours and other things that havent happened for moths or years seem to have happened "just that morning". They do not know what day month or even year it is and often lose perception of whether it is day or night (you would think the darkness would be a giveaway, but apparently not!). The years become like shifting sand and they are constantly living in the past, although it is not consistent.

Wanting to "go home" is classic behaviour at this stage. It is not a question of an actual place, though. It is more a state of mind. "home" represents comfort and security and an escape from the confusion of dementia. Its significant that this starts as the day goes no and she is probably more tired and confused. It also sounds like she is Sundowning" (a period of increased agitation and confusion that starts in the afternoon and evening)

It is no use trying to argue with her - you will never win with dementia. You might find Compassionate Communication to work better
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,640
0
Kent

Hello @Scorpio3537 Welcome to the community.​


I`m afraid your experiences with your wife mirrors the experiences of so many, myself included. My husband experienced this light switch phenomenon daily, not knowing who I was, wanting to go home, packing his bags, restless and agitated.

With us, it was generally during the late afternoon/early evening and attributed to sundowning. This can also happen at any time during the day even though it is most common when the person with dementia is tired.


if i am in kitchen doing dishes or putting washing in she comes up behind me asking what i am doing if i go out which is only 15 min at most she says you have been 2 hours phrases that are all the same


When I used to go to the kitchen just to make a drink, my husband thought I had gone out and would ask where I had been.

Your wife will have lost all concept of time.

These explanations show you these are common behaviours but they don`t help you live with the challenges I`m afraid.

If there are any ways you can distract your wife, they are the best option.

My ways were, its too cold, too dark, too wet, let's leave it till tomorrow.

Sometimes they worked. Sometimes they didn`t.

I remember waiting until my husband was sleeping before I returned all his `packed ` clothes into wardrobes and drawers.
 

lemonbalm

Registered User
May 21, 2018
1,217
0
It's a lot to deal with @Scorpio3537 . Do you have anyone coming to give you a bit of a break sometimes?

When I was looking after my mum, she used to see people outside and often thought they were in her flat. Drawing the curtains well before dark can cut down on reflections from outside, which I think mum often saw as people. I got some sheer curtains for during the day which I think helped too.

When mum was convinced people were in her flat, I used to settle her by physically going in every room to check and then return and say "Just you and me here now, so lets .....have a cup or tea/listen to some music" to distract her. Sometimes she would get upset that the people had left without saying goodbye so I'd make up a message they'd left for her.
 

Whisperer

Registered User
Mar 27, 2017
244
0
Southern England
Dear @Scorpio3537

Several of the things you mention I can recognise in my mum. The actual precise details vary from person to person but underlying themes can be seen. I do not yet get the asking to go home very often but my mum has no concept of the passage of time. Before Covid19 I would pop to the local shops for say 20 minutes. On my return I would be told I had been gone hours, where have you been or I had only been gone a few minutes, that was quick. I am repeatedly asked what day it is, what month it is, what year it is. I do not understand why but mum repeatedly asks if we can visit uncle Bill in Wigan. Problem is he died years ago. He would now be 136yo.

Please consider the use of white lies, love lies, flexing of the truth. Rather than say her uncle is dead and cause upset I say it is to late to travel today we will go tomorrow. Or there is deep snow in Wigan. Covid19 lockdowns do not work as an excuse not to travel as mum does not understand all that has happened and her poor memory means she retains no detail of it. What you have to do is see what gets accepted then stick with it. Remember for your wife each time you give a reason why temporarily she cannot go home it is like the first time. As @canary has said the search for home is an attempt to find the security of an earlier time, most likely long ago. Do not try to logically explain why that is not possible, just give reasons why it cannot happen right now. Follow up with distraction like a cup of tea, music, TV, etc.

Build a little arsenal of reasons to use. Please understand your not deceiving your loved ones, you are working compassionately with their condition. I was advised about this strategy from someone on this forum. It felt uncomfortable at first, but once I saw it work and the upset it reduced I went with the flow. The compassionate communication thread has helped me and my mum a lot.

Please continue to use this forum. It is built on the practical experience of the members not theory. I have found it very useful and the members may never meet but they are friendly and supportive. You have received several earlier well informed answers. Take what will work for you and your loved one, pick and mix. Some suggestions will not work, others only if you patiently persist. Mum still wants to go to Wigan some days, but now it is not all day. Yes mum we will go when the snow has gone up North, the car MOT has been done, etc. Now how about you helping me with the washing up, sit in the kitchen with me whilst I get lunch together, shall we have a drink, how are you doing with your magazine, etc. Mum has read an article to me repeatedly this week about the health benefits of parsnips, last week it was a tribute to Sean Connery. Better than repeating the same questions over and over. Best wishes for the future.
 

Scorpio3537

New member
Jan 16, 2021
3
0
Thanks Whisperer,LemonBalm,Grannie G,Canary
for your speedy replys its good to get info from other people in a similar situation
I do try to take heat out of situation when kathleen starts but sometimes i do snap which i immedialy regret and say i have just told you i know its not her fault its this horrible disease,
last night she said " you have brought me here to this pub and there is only us 2 left here i want to go home so get me a taxi" and loads of things like that on a train on a bus .
when i said we was in lockdown she was banging on window withstick saying she was trying to see if someone can come and let us out as the police have locked us in.
things like that are every day so it does get me down
but thank you once again for repling
Robert
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,640
0
Kent
Hello @Scorpio3537 /Robert


things like that are every day so it does get me down

Please don`t hesitate to ask for help. I know things are extremely difficult during this pandemic but help may be available if you make yourself known.

Try this link to see what may be available to you.

 

lemonbalm

Registered User
May 21, 2018
1,217
0
Also don't hesitate to ask your wife's doctor if they can prescribe something to help with her anxiety @Scorpio3537 . A low dose anti-depressant/anti-anxiety medication can be very beneficial in many cases.
 

Scorpio3537

New member
Jan 16, 2021
3
0
yes i have spoke to doctor they put me in touch with the admiral nurses and the young lady was very helpful reccomended lanazaprom and i think it as eased situation.
but she is also bad on her feet as well so walking is a problem i have got a chair and a stairlift for her but her mobility is not too good.
had no outburst last night from her she was subdued all night
i was wondering if she had moved to a different phase as i did read that there are several stages to it
but thank you for your replies is much appreciated
Robert