Observations on dementia

[HillyBilly]

Just some random observations from the last couple of weeks really - am guessing quite common?!

There is (certainly in my Mum's case) a complete lack of empathy or awareness of other people's own needs, circumstances etc. As an example - am up with Mum in the middle of the night. Mum - why are you whispering? Me - because it's the middle of the night and OH is trying to sleep. Mum (in extra loud voice) - OH! (That word OH she somehow manages to stretch out to 5 syllables and tones as if what I've just said is the most bizarre thing ever!). When she had to use the porta-loo at the weekend, she simply left her used pads on the floor (as she does here at home too mind - even though there is a bin right next to every toilet!). There is absolutely no comprehension of or curiosity/interest in e.g. how the laundry is getting done to ensure clean, dry clothes appear in her wardrobe; what happens to the bins that become full of incontinence pads (magic!); how the chemical toilet empties itself every few days. I could go on lol.

Another thing I've noticed is that unless something is right in front of her - she can't see/find it e.g. she goes to bathroom specifically to brush her teeth. Stands at the sink and says she can't find her toothbrush (it's in a wall-mounted toothbrush holder just to one side of the sink. She can never find the toilet roll either (on a wall mounted loo roll holder beside the toilet but, of course, behind her). Am going to start buying coloured toilet paper, see if that helps.

I can now totally understand how a PWD can become malnourished (and/or dehydrated). Mum is unable to remember when she's eaten. If I say that dinner will be ready soon, she'll often say that she thought we'd had dinner already. Are you hungry? She'll then either say "I'm always hungry" or "I don't know". She never requests food (or drink) - it always has to be offered/presented.

I'm sure there will be more of these as time goes by! If one was more detached from it, it could be quite fascinating!

 

[Rodelinda]

Your observations chime with my experience with my mother who lives with us and I could have written almost exactly the same. I find it interesting as my mother's world was looking after the home and she did it brilliantly but now isn't at all curious or interested in how everything gets done. But on the other hand her lack of empathy/understanding (of the impact she is having including that my OH and I can't go out together, that I might be tired having been up in the middle of the night having worked all day etc) and her requirement that what she wants must be done 'now' (not even in 5 minutes) seems to be a distillation of how she always behaved although then it was moderated through conscious thought and some understanding of others' needs and wants.

We're also fascinated by what must be going on in her mind given what she will suddenly come out with. Sometimes I can trace it back to something that happened earlier that day or a seminal moment in her early/our family life but at other times I am totally baffled. What we find hard is when she imagines a response from one of us - this evening I was told not to give her salads any more as it takes a long time for her to eat it and she didn't want another of those 'dirty looks' from my OH. It goes without saying that there was no such look - and in any case as they sit next to each other on the same side of the table and my mother can't look round it would be impossible for her to see my OH's face.

I am trying to develop a certain detachment from the emotional side of caring for my mother - of course I hug and kiss her but I know from reading posts from other TP-ers that it's going to get much harder and I'm trying to develop a bit of a thick skin. I'm also trying to learn how to react/respond to situations so that I stay calm (which isn't easy as I have a short fuse). Sorry for the musing but it is interesting to think about things.. All the best Sue (ps I love that picture of your dog with your mother)

 

[WORRIER123]

I echo both your comments. No thanks , just moaning or saying things aren't done properly.
And yes how my boyfriend who sits next to dad on the sofa is pulling faces.
I try and ignore these things but very difficult and just makes me so angry

 

[Marnie63]

Totally the same with my mum HillyBilly. I think all of that is common with dementia (my mum has Vascular Dementia by the way).

The lack of empathy is very hard, but I have become used to it. When mum declined very suddenly end of last year, I had some terrible times when she wasn't sleeping for weeks on end (called 999 in the end and she was taken to hospital - just could not cope any more!) During those nights, when I was still learning about all of this and thought I could 'reason' with mum, I tried many times to explain I needed to sleep. I now know better - no point at all doing that, and she would not have noticed how awful I looked after so much sleep deprivation! Not trying to scare you, but there's no reasoning with dementia after a certain point.

 

[HillyBilly]

It's almost funny, isn't it - these common traits?

Does anyone else get great big loud yawning? The first time Mum did it (I think she was sitting on the toilet at the time) I thought she was in great pain and ran in to see what was up! No, not in pain or dying...simply yawning. Never heard anything like it!

 

[WORRIER123]

Not had the yawning yet
Today I was up at 5am like everyday to do jobs before leaving for work at 6am to return at 6pm where I then care for dad till 5am again
This morning he tells me I am a disappointment , I do nothing, I don't care or look after him as I should
I have changed my working hours, don't go on holiday, don't go out only to work, do all the cleaning cooking washing ironing waiting on him hand and foot help him with commode (in addition to carers everyday)
He just doesn't realise what I do or have given up for him
It's quite hurtful to be told this

 

[marionq]

You're a disappointment and I'm mad! Had husband showered, shaved and in his underwear, left for five minutes to put laundry downstairs and expected him to continue to put his clothes on. All laid out on bed in order. Came back to find him with underwear off and back in the shower.

Yes, indeed I did rant and rave. We'd been up since three - well I had, he was able to fall asleep again after I got him back to bed.

So when he goes off to daycare I will be glad to see the back of him and if only I could think of something nice to buy myself then I would. So there!

 

[canary]

I recognise all of these traits - even the yawning. Does she also sneeze so loudly that it sounds like an explosion? Every time OH sneezes I nearly shoot through the ceiling

Its funny isnt it - people who dont deal with dementia often think that they just get forgetful, whereas its far, far more than that.

 

[canary]

Oh dear, Marion. Doing something nice for yourself sounds good.

 

[LadyA]

The lack of empathy is, unfortunately, one of the symptoms of the disease. And very hard to take. I think until we come up against this, we don't realise how much we depend on emotional feedback from those we love. And it does seem to make the 24/7 caring very much harder - I think it's one of the reasons "professional" carers can go on for years and years. Well - that and the fact that they are doing their shift and then going home, and they get days off, and holidays, and a pay cheque, and (not least) the gratitude of family carers and, and, and,

 

[HillyBilly]

Does she also sneeze so loudly that it sounds like an explosion? Every time OH sneezes I nearly shoot through the ceiling

LOL - no, not had that one yet!!!! That's one to look forward to!

 

[Wolfette]

I consider myself to be fairly new to all of this. A little insight to my life if I may, my parents moved in with me just over 2 years ago, house extended with bedroom/wetroom. Dad is disabled with various ailments and mom has vascular dementia. Added to this my daughter has MS though she does not live with me I do what I can as she has a 3 year old son to look after. Mom was diagnosed more or less as they moved in with me. I have no idea where my mom is on a scale of 1 to 10 with this dementia and over the last 2 weeks she has gone downhill very fast with not eating or drinking. Doctor came to visit last week and is coming back today. A dementia gateway nurse is coming tomorrow so hopefully I will have a better understanding of what I'm supposed to be doing. I am mortified with myself that mom is not on any medication for this disease and feel like she has slipped through the net so to speak. She has meds in a dosset box and I thought one of the tablets was for dementia ? This will be sorted today once doctor arrives. It has given me some comfort and some trepidation to read what some of you are going through and an insight of what I may or may not have to deal with.

 

[Witzend]

I recognise all of these traits - even the yawning. Does she also sneeze so loudly that it sounds like an explosion? Every time OH sneezes I nearly shoot through the ceiling

.

My dh has always done that! I gave up long ago telling him that it's not necessary to shout at the same time - he 'vocalises' it.

When our first baby was very tiny he sneezed like that close to her, and it frightened her so much that she cried for ages. He was mortified, but it still didn't stop him.

 

[Rodelinda]

Yes, my mother (who is another vascular dementia sufferer) can yawn massively - it's as if she's wanting lots of air. She's currently in one of her sleeping for England phases. Wolfette - don't despair or feel mortofoed. There aren't any drugs that can help vascular dementia so the memory drugs given for AD don't help. There may be other drugs that are helpful for some of the side effects such as sleeping tablets or mild tranquilisers (my mother takes one Mirtazapine at night) but nothing can help the changes to the brain. All the best. Sue

 

[Ann Mac]

I can relate to quite a lot of this. The lack of empathy - definitely! When Mum-in-law went through phases of being up through the night, keeping us all awake, there were times when I was almost begging her to be quiet because her son had work in the morning, or her Granddaughter had school - Mils usual response was 'So?' Sometimes, I felt that it wasn't so much that she didn't notice that I or someone else was ill - it was more that it only had any relevance to her if it was likely to impact on her. For example, just a couple of months before she stopped living with us, I had an awful throat and chest infection, the worst I'd had for several years, and I was really poorly. Helping her wash and dress one morning, I had a bad coughing fit - and Mils response was a very unsympathetically expressed comment along the lines of she hoped that I didn't pass my 'germs' on to her. Absolutely no concern for me that I was so obviously ill, and no apparent awareness that, ill or not, I was still helping her and doing things for her.

As for the not seeming to realise that things just 'magically' get done - I have another theory there. I believe that yes, often it just didn't occur to Mil to even wonder where the clean clothes or the food came from, she rarely acknowledged me even putting her meal down in front of her at the table - but sometimes, it wasn't that - it was that she was utterly convinced that she WAS the one doing all these jobs herself. I remember handing her a pile of newly washed and ironed clothes to take up to her room - and she had been able to see me stood ironing from where she was sat in the lounge - and she took them from me with the comment that she meant to put them away earlier, after SHE had finished ironing them. If someone commented on her hair looking nice at Day Care, she would tell them how she had spent ages styling it - at that point, she couldn't even comb it herself, sadly, I would either curl or blow dry her hair every morning. A few times I would ask if she had enjoyed her tea (that obviously I had cooked) and she would tell me that she 'always' enjoyed stew/liver/fish - often adding that's why she had cooked it ! And she really did believe that she had done all these things herself - so I suppose in her eyes, there was no need to wonder how all the jobs got done - she 'knew' that she did them herself!

 

[marionq]

I'm glad that you've all chipped in to Hilly Billy's post because I really was cheesed off this morning. It's good to be reminded that you are not really the target of a selfish, self centred oaf but just on the receiving end of a disordered mind. My husband is a nice, sociable, amiable creature but he drives me nuts usually in the morning and usually connected with the whole showering, shaving toothbrushing routine. There is a consolation in hearing him praised for being so smart but if others could see the effort that goes into keeping him like that they would be amazed.

So, all of you out there who feel undervalued don't be a screechy banshee like me. Take a deep breath, pat yourself on the back for the good work you do and live to fight another day.

 

[sleepless]

Just some random observations from the last couple of weeks really - am guessing quite common?!

There is (certainly in my Mum's case) a complete lack of empathy or awareness of other people's own needs, circumstances etc. As an example - am up with Mum in the middle of the night. Mum - why are you whispering? Me - because it's the middle of the night and OH is trying to sleep. Mum (in extra loud voice) - OH! (That word OH she somehow manages to stretch out to 5 syllables and tones as if what I've just said is the most bizarre thing ever!). When she had to use the porta-loo at the weekend, she simply left her used pads on the floor (as she does here at home too mind - even though there is a bin right next to every toilet!). There is absolutely no comprehension of or curiosity/interest in e.g. how the laundry is getting done to ensure clean, dry clothes appear in her wardrobe; what happens to the bins that become full of incontinence pads (magic!); how the chemical toilet empties itself every few days. I could go on lol.

Another thing I've noticed is that unless something is right in front of her - she can't see/find it e.g. she goes to bathroom specifically to brush her teeth. Stands at the sink and says she can't find her toothbrush (it's in a wall-mounted toothbrush holder just to one side of the sink. She can never find the toilet roll either (on a wall mounted loo roll holder beside the toilet but, of course, behind her). Am going to start buying coloured toilet paper, see if that helps.

I can now totally understand how a PWD can become malnourished (and/or dehydrated). Mum is unable to remember when she's eaten. If I say that dinner will be ready soon, she'll often say that she thought we'd had dinner already. Are you hungry? She'll then either say "I'm always hungry" or "I don't know". She never requests food (or drink) - it always has to be offered/presented.

I'm sure there will be more of these as time goes by! If one was more detached from it, it could be quite fascinating!

That's dementia for you!
And it also highlights the difference between what we all know dementia to be, and the watered-down, pre-watershed version that is often how the general public perceive it.
Thank goodness for this forum.

 

[WORRIER123]

1 min from the front door and sitting at a bus stop avoiding going back to the lack of empathy for the 600th day
Have to go back as social services coming at 2pm to review dad
Feel like saying to dad while they are here so what do you feel you need more help with seeing as I have let you down and are a disappointment to you with the help I give ?
Let's see if he turns on the hostess mode !
Ugh need to leave my bus stop bench in 5 mins max

 

[patmac]

The lack of empathy is, unfortunately, one of the symptoms of the disease. And very hard to take. I think until we come up against this, we don't realise how much we depend on emotional feedback from those we love. And it does seem to make the 24/7 caring very much harder - I think it's one of the reasons "professional" carers can go on for years and years. Well - that and the fact that they are doing their shift and then going home, and they get days off, and holidays, and a pay cheque, and (not least) the gratitude of family carers and, and, and,

Hi LadyA, absolutely right, I used to be a 'professional carer' I loved my job and I think I was good at it. Now years later looking after my own mum at home, no comparison whatsoever. It's so much harder, no end of shift, no going home, no holidays and not much gratitude either. The lack of empathy was a real shock, mums favorite grandchild was very ill at one time and mum just said 'she'd be better off dead'. It was my daughter she was talking about...can't describe how that made me feel.

 

[WORRIER123]

And the empathy changed each day. Last night and this am dad was polite and said thank you and even said u need a holiday. It won't last but does make you understand more when they are rude it's this dreadful disease