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Your tips: dealing with changes in the person you're caring for

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HarrietD

Administrator
Staff member
Apr 29, 2014
6,598
0
London
Every issue our magazine includes real life experiences, and they'd like to hear from you.

What advice do you have to help someone dealing with how much a person with dementia has changed in the past few months?

This could include:
  • Coping with seeing how much impact the pandemic and lockdown have had on the person
  • Dealing with how much someone's dementia has progressed regardless of the pandemic
Please add your comments below, and they may be featured in the next issue of the magazine.

Thanks everyone :)
 

karaokePete

Registered User
Jul 23, 2017
6,123
0
N Ireland
One thing I found most useful was reading as widely as possible as that has meant that when some new change occurs it hasn't thrown me.

An example of that was the time, about a year ago, when my wife asked "Which Pere are you?" - I immediately thought, oh, the Capgras Delusion, and was able to deal with the situation very calmly.
 

Old Flopsy

Registered User
Sep 12, 2019
218
0
The Capgras Delusion is interesting to read about.

A few weeks ago as I was assisting a very wobbly OH back into the lounge he pointed at my chair and said 'Where's she gone?'
 

PARKLEYS

Registered User
May 12, 2014
2
0
When something goes wrong, (like they can't do something that they used to do easily), they will probably be aware of it and get upset (especially in the earlier stages). You can't say, "It will be alright" or "You'll soon get better": you know and they know that just isn't true - it does matter and they will not get better.
I found the best strategy was to ignore the thing that had gone wrong: do nothing about it, say nothing about it but immediately introduce a distraction: move to a different position or different place, talk about something entirely different, give them a very simple task (which you know they can do).
It's heart-breaking: it all is - but that strategy reduces the stress they feel when things go wrong.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
6,598
0
London
Thanks for sharing this @PARKLEYS - that sounds like a difficult thing to do, but a really good strategy to help reduce their stress as you say.
 

CAREME

Registered User
Mar 9, 2021
11
0
I have found linking a situation back to the Dr (in my situation, my father has very high opinions of her). For example as we are starting to introduce carers to help I have told my father that they are working really close with the Dr to ensure he is safe, and they will need to check things to feedback to the Dr.
 

mickeyplum

Registered User
Feb 22, 2018
162
0
The changes in my 92 year old husband over the past year are probably similar noticed by other carers.
1) mobility has worsened, meaning he is reluctant to leave the house to try and walk more than a few steps outside.
2) losing more sense of where he lives and where 'home' is. He sometimes seems to think we are on holiday and says 'this is'nt a bad place, we get plenty to eat and can come and go when we want'.(I must say it's cheaper than actually going on holiday! )When he says how long are we here for I say, 'We're home now and we're here forever.' He says, 'Good'
3) has lost sense of which family member in the family belongs to who. Doesn't recognise words like daughter, grandson etc. so I try not to use them.
I notice subtle changes almost daily and try and adjust my responses accordingly. Mainly, never contradict him or tell him he's made a mistake. Sometimes he says his memory is terrible and looks worried. In the beginning I used to say it was simply due to changes in his brain that occur as we get older. He can no longer grasp staements like that, so nowadays I just reply, ' Yeah, my memory's the same sometimes.' and change the subject. A moment later he's forgotten about it.
 

Dartist

Registered User
Apr 30, 2017
1
0
SE London
Keep the atmosphere calm and don't contradict try accepting the new version of your loved one.
Don't overload them with facts of old life but try to keep to your routines,. I found that gentle touches meant a lot to my husband - reassurance . The sense of touch seemed to stay with him to the end. I knit and he used to love holding the ball of wool and "sorted it out" I think as a boy he used to help his mum holding the skeins of wool whilst she rolled them into balls to knit with. So its worth trying to reconnect with skills.
 

JustNan

New member
Feb 11, 2020
1
0
When something goes wrong, (like they can't do something that they used to do easily), they will probably be aware of it and get upset (especially in the earlier stages). You can't say, "It will be alright" or "You'll soon get better": you know and they know that just isn't true - it does matter and they will not get better.
I found the best strategy was to ignore the thing that had gone wrong: do nothing about it, say nothing about it but immediately introduce a distraction: move to a different position or different place, talk about something entirely different, give them a very simple task (which you know they can do).
It's heart-breaking: it all is - but that strategy reduces the stress they feel when things go wrong.
Thank you for sharing.
 

Arty-girl

Registered User
Jun 29, 2020
40
0
It's been a huge struggle to cope with the difference from 13 months ago, when mum and I could sit watching Tv and discussing programmes the way you would with anyone else, to now her being totally bed-ridden after a urine infection and three weeks in hospital. We now have 2 carers coming in 4 times each day to see to her personal care. I do all the cooking, laundry, cleaning, grocery shopping (with occasional help from my neice when I can't get out), etc. Mum can no longer form full sentences and in many cases it's just 'hmm hmm' for both yes and no, but I do believe she understands a great deal more than what she can verbalise. One case that made me realise is when one of the carers made a simple comment of "it's such a same when they get like this". She obviously was just being sypathetic but I'm sure my mum totally understood what she said and since then, it's almost like she's giving up. The last three days has been very difficult to get her to eat or drink as well as she did, or it could simply be that her tastes for the things she likes are changing. The whole of the last year, her decline has been notable literally on a week by week basis. so this could be more decline. The consultant in the hospital stated that she was approaching 'end stage' which I, of course, then researched and found that could mean anything up to 3 years. Apart from her brain detriorating, she had several tests done in hospital (around a dozen so the consultant said) and the all ame back clear except for the urine infection. He commented that, bodily function-wise, she's really healthy for a 90 year old at the moment, but of course, her brain is failing. It's incredibly sad.
 

AwayWithTheFairies

Registered User
Apr 21, 2021
141
0
We are at early stages, but that means I am dealing with my own fresh grief every time Mum does something odd, or I uncover a problem like a scam she has bought into, that reminds me what is happening to her. This happens several times a day. It helps that I have learned more about the disease by reading this forum and books. As a result I have stopped correcting her, or pointing out I just told her where we are going or what day it is, and just calmly answer and change the subject.. I am trying to redirect her watching whatever is on tv such as nasty murder shows or animals eating each other in case it affects her mood or dreams. I am trying harder to take her on outings even though they are a trial for me, and trying not to be irritated that I have to decide and direct every detail, guessing what she needs or wants, and she shadows me everywhere walking on my heel instead of walking beside me. I and other relatives noticed something was wrong during the long months of isolation as she lived alone through the pandemic and abruptly lost her exercise classes, church, lunch with friends, and kept signing up for scam insurance and buying things she didn’t need, and calling us in a panic because someone had called her and said her computer was broken or she had to pay for an iPhone she had bought. There has also been a redoubling of scams aimed against people in her situation, I think, though responding to them may have also made her more of a target. She has also been bombarded daily by charity begging and can’t remember when she has already given, so pays again. It now obvious things were going downhill before the pandemic but what was a gentle decline has become a ski slope!
 

Arty-girl

Registered User
Jun 29, 2020
40
0
We are at early stages, but that means I am dealing with my own fresh grief every time Mum does something odd, or I uncover a problem like a scam she has bought into, that reminds me what is happening to her. This happens several times a day. It helps that I have learned more about the disease by reading this forum and books. As a result I have stopped correcting her, or pointing out I just told her where we are going or what day it is, and just calmly answer and change the subject.. I am trying to redirect her watching whatever is on tv such as nasty murder shows or animals eating each other in case it affects her mood or dreams. I am trying harder to take her on outings even though they are a trial for me, and trying not to be irritated that I have to decide and direct every detail, guessing what she needs or wants, and she shadows me everywhere walking on my heel instead of walking beside me. I and other relatives noticed something was wrong during the long months of isolation as she lived alone through the pandemic and abruptly lost her exercise classes, church, lunch with friends, and kept signing up for scam insurance and buying things she didn’t need, and calling us in a panic because someone had called her and said her computer was broken or she had to pay for an iPhone she had bought. There has also been a redoubling of scams aimed against people in her situation, I think, though responding to them may have also made her more of a target. She has also been bombarded daily by charity begging and can’t remember when she has already given, so pays again. It now obvious things were going downhill before the pandemic but what was a gentle decline has become a ski slope!
I totally understand where you're coming from. Your comment is almost the exact experience I've had. It sometimes make you wonder how we are going to rise up again from all this sadness. I would advise making sure you are in control of her pension and attendance allowance. Also make sure you get any LPA's in place in good time. My brother and I managed to get the Financial and Property one but mum was too far gone to get the Health & Welfare LPA. Sending hugs.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,366
0
Yorkshire
hello @JustNan
a warm welcome to DTP
I'm glad reading other members' experiences is helping you
now you've started, do keep posting as it does help to get things off your chest among folk here who understand
 

Old Flopsy

Registered User
Sep 12, 2019
218
0
@AwayWithTheFairies Yes you are right- if your mum is responding to scammers her details will be passed on to other scammers. My OH was found on a scammers list when trading standards investigated a firm. A lady from Social Services was sent to talk to him- I didn't know about her visit till there was a follow up phone call months later to ask if scam calls had reduced!

I got a landline phone from BT that requires the caller to announce who they are, which I can hear, then I can press 1 to accept, or block, or let it go to answerphone. So many calls were coming every day and now none. Such a relief.
 

Catastrophe

Registered User
Feb 15, 2019
54
0
It's been a huge struggle to cope with the difference from 13 months ago, when mum and I could sit watching Tv and discussing programmes the way you would with anyone else, to now her being totally bed-ridden after a urine infection and three weeks in hospital. We now have 2 carers coming in 4 times each day to see to her personal care. I do all the cooking, laundry, cleaning, grocery shopping (with occasional help from my neice when I can't get out), etc. Mum can no longer form full sentences and in many cases it's just 'hmm hmm' for both yes and no, but I do believe she understands a great deal more than what she can verbalise. One case that made me realise is when one of the carers made a simple comment of "it's such a same when they get like this". She obviously was just being sypathetic but I'm sure my mum totally understood what she said and since then, it's almost like she's giving up. The last three days has been very difficult to get her to eat or drink as well as she did, or it could simply be that her tastes for the things she likes are changing. The whole of the last year, her decline has been notable literally on a week by week basis. so this could be more decline. The consultant in the hospital stated that she was approaching 'end stage' which I, of course, then researched and found that could mean anything up to 3 years. Apart from her brain detriorating, she had several tests done in hospital (around a dozen so the consultant said) and the all ame back clear except for the urine infection. He commented that, bodily function-wise, she's really healthy for a 90 year old at the moment, but of course, her brain is failing. It's incredibly sad.
A couple of years ago Dad had a uti and silent pneumonia which resulted in 3 weeks in hospital. When he came out he was dased, confused and delusional. It took 6 months to get past that delusional stage. Obviously mentally there were changes but not as many and physically he improved. Every Dr and nurse we spoke to gave us a different view of what would happen. What I am trying to say is you might get some function back over the next few weeks.
It's a shame the care people did not keep their comments to out of the patients hearing.
 

DennyD

Registered User
Dec 6, 2016
240
0
Porthcawl, South Wales
From my experience, the start of the lockdown was quite positive for me and my husband. There were not many people around which helped manage social distancing when out. He was at a stage where all other guidance did not make much of a difference to his general demeanour. Other than repeatedly have to explain what he was picking up on the news.

It became quite different upon emergency admission just before Christmas. Dealing with the changes that brought has been intense and difficult. I would say how you deal with it depends on how contact and controlled visits have been managed by care providers. I felt very restricted and the strictly supervised visits undoubtedly made matters worse for my husband. I firmly believe that deterioration speeded up due to Covid restrictions. Support given to me by care providers does help ease anxiety, other staff have been less supportive which on occasion leaves me feeling bereft. I've learnt not to have expectations, and where they do pop up is to try ignore them. It is natural to feel anxious before a visit. For me it works best when going with the flow and to make staff aware that is what I intend to do, I am there for my husband, and will follow his lead. After the visit I take time out to let the emotions settle first then later will reflect on what happened during the visit. These reflections will hopefully help build a new connection with him that was lost because of changes brought on by Covid.

I understand there are calls for an investigation on how the Government dealt with Covid in care homes, equally I would call for at least a reflection how how care providers handled visits/contact between family and their loved ones.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
6,598
0
London
Thanks so much everyone for taking the time to share your experiences. I'll close this thread now, but all of your comments have been so helpful and I know our magazine team will really appreciate them.
 
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