Dimentia, how do you handle it?

[Grumpy John]

My mum is in her early 90's and has dimentia (Alzheimer's) which gets worse in the evenings (Sundowners syndrome). As a consequence of this I only visit her on weekends, mid-morning to mid-afternoon and rarely (if at all) answer her phone calls in the evening as the conversations with her leave me upset/angry/confused. Are there any other forumites going through/been through this with a loved one?

Cheers
GJ

[Chesand]

Unfortunately this condition is very distressing for the relatives, etc.
Patience is required but that can be very difficult.
The person who has the condition usually has no worries because they are blissfully unaware of the world around them.
There are groups such as Alzheimers Association which can offer help in understanding how to deal with this situation.
Many years ago I went through a similar situation with my father (more physical than mental deterioration) I used to get very angry and upset about what had happened to him until I realised that it was just eating me up as I was not able to change the situation but only support him.
Hope that helps you a little.

[tea lady]

She must be not that bad really if she can still telephone you. And in her nineties? Is she still in her own home? My hubby's mum has Alzheimers, and is in an old age home. (She was only in her 60s when she got it.:C) She doesn't do much at all now, but early on conversations would go round and round the same thing. It was a bit distressing, but I just go along with it, and steer the conversation somewhere else. I guess I'm a bit removed 'cause its not my Mum, and I didn't know her "before". We take our son, and drawing stuff and kids books and snakes and ladders and just do stuff in the room with her there. The company hopefully helps her feel good. And helps my Hubby feel better too. At least she seems content. Some other people in the home are constantly disorientated and calling out. That would be hard to deal with. Don't think I can offer any thing to help really, other than support and a virtual hug. :console:

[Grumpy John]

Thanks for you thoughts Chesand, I've done all the rationalising but I still get upset after one of our conversations. As tea lady said these conversations just go round and round, then five minutes later the same conversation crops up again.

Tea lady, my mum has been in an aged care facility for about a year now and she keeps ringing up asking when I'm going to take her home. The other night she rang up thinking I was her husband and that I'd left her, another time she told me that I'd raped her when I was 12, with conversations like this you can see why I don't like answering the phone.

In my original post I sait that I feel upset/angry/confused after these conversations, but that's not as bad as the guilt I feel when I don't answer.

Thanks for the hug:).

[barnsey]

G'day Grumpy John,

Yeah, my mum is in her 90's in an aged care secure facility too.

Doesn't it suck.

Full of the wonderful memories of her through your life and now you're not sure - the light's on but!!!

They tell me that they know but!!!

I still go and visit - not as often as I should!! Still I guess her condition is such that she doesn't really know that.:C Think my Mum might be a bit further down the track than yours.

Her mum spent 15 years in the same position - knew nobody and was rather incapacitated so I guess I knew it might happen.

I find it heart wrenching that she really doesn't know where or what is going on, she hardly talks and every time I leave I feel so guilty that I am.

That causes me to delay seeing her again cos I don't want the hurt again:-

Her condition tore my father apart - they were married 60 odd years and he hated seeing her that way but stuck by her till his end. I very guiltily wish they were together wherever that might be.

Guess I can't really help but you have my thoughts with you in the situation we are in. Even worse she made me promise that I'd not let her get like her mother - 'shoot me before that' she said.

Yeah it sucks,

We can just treasure what we have had I guess. We wouldn't feel this way if we hadn't.

Jamie

[tea lady]

Gee Grumpy. It does sound hard. We are lucky in that at least we have a quiet happy little old lady. How come she has access to a phone? I guess the home know what is going on. Maybe they could suggest what to say during one of those phone calls. :shrug: (And she prolly doesn't remember making the phone calls.:rolleyes::C) .....Maybe you could telephone her during the day if you can't get to see her when she is more OK.

[Grumpy John]

Gee Grumpy. It does sound hard. We are lucky in that at least we have a quiet happy little old lady. How come she has access to a phone? I guess the home know what is going on. Maybe they could suggest what to say during one of those phone calls. :shrug: (And she prolly doesn't remember making the phone calls.:rolleyes::C) .....Maybe you could telephone her during the day if you can't get to see her when she is more OK.

I spoke to the Director of Nursing at the home and she suggested that I tell her "I'm busy at the moment, but I'll be down in a couple of hours". This will settle her down and she forgets the conversation in about 1/2 an hour. Seems to be working, but I'm going to hell for lying to my mum so much:burnt::devilred:

[DavidG]

Mum (88) has gradually gone down hill with dementia. She is now in a nursing home.
She has forgotten most of the family and her deceased husband.

She lives in her own, but happy little world.

Conversations are a repetitive cycle.

The important thing is to take what ever they say with a grain of salt. Don't let it get to you as they won't remember saying it to you.

Routine is important, so try not to break it.
If I visit Mum before lunch and she leaves the activity room, then she thinks she has had lunch and won't eat it when it is brought to her.

If I want Mum to do something I say it was her idea and everything is Ok.
This works for taking her on outings as she will say NO is you ask her to go out.
Say you have arrived to take her out as she asked for then all is OK.

What ever way you look at it, it is very stressful for the whole family so just take it easy and realise there is little you can do but try to make their life comfortable..


There is a lot of information on the web

[bsrlee]

I just had to put my Mum in a nursing home today (Tuesday) due to her dementia - NOT a good day, her carrying on in fine style, me nearly throwing up with stress every few minutes, all that good stuff.

There is some disagreement among the doctors just which sort of dementia it is, but its a case of lights on, no one home most of the time. Found out when the ACAT assessment was being done that they had misplaced the specialist's report that said she should have been in a home before last Xmas - it was in the folder, they just hadn't acted on it.

Mean time I am just short of another big spin out due partly to missed respite care etc. I now have to do all the paperwork & financial stuff, may end up loosing my home in a year or two as Mum ended up with the title after Dad died & I didn't have any paperwork to cover my contributions towards the house - may end up feeding the lawyers yet.

[Grumpy John]

Brslee,
My heart goes out to you mate, I was lucky enough to have a decent social worker on mum's case before she went into care. She advised me to get power of attorney (legal, medical, financial), this has saved me so much trouble when dealing with having to sell mum's house, centrelink and setting up her finances. I don't know whether it's a good thing that I'm the only close relo mum has as every decision has fallen to me, but at least there are no family fights.

[arose62]

I had to move my mum into a facility earlier this year because of her dementia.
Dad's moved into the same place, but in a separate room.

Unfortunately (for us), when we visit Mum, it seems to upset her, and she gets into the cyclical arguments, wants to go 'home', gets distressed that she wasn't consulted before being 'put away' etc. etc.

So, we are now in the situation where Dad only goes down the corridor to visit Mum once a week or so, and I visit Dad most days, but rarely visit Mum. It took a while to accept that this arrangement is for the best all round, but thankfully the staff always make the time and effort to report to Dad on what Mum's been doing, and that she's OK, even good, when her family aren't around.

When we do visit Mum, Dad often falls into the trap of trying to explain or reason with her, whereas I've learned to just agree with whatever her current 'reality' is.

It's tough - Real Tough!

Cheers,
Andrew

P.S. A big "Thumbs Up" to 'William Cape Gardens' at Kanwal on the Central Coast NSW. Looked a quite a few places before choosing this one. Dad went in for 2 weeks respite, and to check the place out from the inside, and decided to stay. He loves it there, regards the staff as an extended family.

[Calm]

GJ, i know it is hard for you and my sympathy goes to you, Derryn Hinch says something that i think is so true - the only difference between them (old people) and us is they got there first - not much comfort but remember you still have your mother, plenty of others dont.

Cheer up:2tsup::2tsup:

[prozac]

Before my Mum passed away she kept asking why she couldn't go home. Talk about how the place she was in looked like a swish hotel would help change the subject except she would then comment that they still hadn't charged for the accommodation. We would talk about taking a trip. "I think I need a holiday" she would say.

The staff at the nursing home would comment that my mother was always a lot more content when I visited than when my sisters visited. I think that this was because I just accepted where her mind was at on any particular day and did not try to make sense of anything said. Just go with the flow, be happy that they know if you are there, hold their hand and chat, or not chat, read a book to them, but just be there and be calm. I'd hold Mum's hand for ages sometimes without either of us saying anything. Don't expect anything in return. They mostly need company and comfort. Ask the questions you will never know the answers to after they're gone. You may be surprised at the answers and the things remembered.

[STAR]

Before my Mum passed away she kept asking why she couldn't go home. Talk about how the place she was in looked like a swish hotel would help change the subject except she would then comment that they still hadn't charged for the accommodation. We would talk about taking a trip. "I think I need a holiday" she would say.

The staff at the nursing home would comment that my mother was always a lot more content when I visited than when my sisters visited. I think that this was because I just accepted where her mind was at on any particular day and did not try to make sense of anything said. Just go with the flow, be happy that they know if you are there, hold their hand and chat, or not chat, read a book to them, but just be there and be calm. I'd hold Mum's hand for ages sometimes without either of us saying anything. Don't expect anything in return. They mostly need company and comfort. Ask the questions you will never know the answers to after they're gone. You may be surprised at the answers and the things remembered.


My wife is a Community Nurse. The majority of her clients are geriatric or palliative care. Her mother, is in a Nursing home and amongst other things suffer dementia. Somedays she is ok and others off the planet. I know it is hard when a loved one goes this way.

My wife's brother was in total denial that she had this condition, however now the progression of unbelief has given way to acceptance. Maybe because of the special people skills of my wife she is able to sit and talk with her mother even when no sense is made of the conversation to an outsider.

Sometimes, just being there is all that is needed.

[Sebastiaan56]

My father has this condition as well. All of the symptoms mentioned above, paranoia, rage, wandering etc, 82yo. What strikes me is his loneliness. We visit and he forgets that we have visited. He then extrapolates that to "no one visits". He is in excellent care and I asked him the other day if he would be better in than out. He said in, it eased his discomfort for a while.

My wifes grandmother went the same way, its a long slow road Im afraid..... Warm thoughts to all.....

[prozac]

There's a good argument for driving your Ferrari, or Porsche, or Datsun 1600 into a rockface at grossly excessive speed when you reckon you've gone far enough.

......now, where did I put those keys?

[arose62]

Last Wednesday was the official opening of William Cape Gardens, where both my parents now live. The facility has been operating for a year, and my parents have been there for about 6 months.

While Mum's dementia means she is reluctant to leave her comfort zone of the secure dementia wing, Dad has made a conscious decision to make the most of his move into care.

He is the only resident taking advantage of the 'Mens' Shed' at Wm. Cape, and he is working his way through sanding and re-oiling all the outdoor furniture, making aids for the Diversional Therapists (playing card holders, horse cutouts for Melbourne Cup Day, footstools, etc. etc.).

At the official opening Dad's contribution was recognized by Hon. Justine Elliott MP presenting him with a "Community Service Award".:2tsup:

After the official guff, the owners and the builders of Wm. Cape had a chat with Dad in the shed, and jokes were made about it not qualifying as a 'real shed' due to the lack of a beer fridge. The next day, Dad rang to tell me that a brand new bar fridge has been installed in the 'Mens Shed', :D so he's now had practical, as well as symbolic, recognition of the work he's been doing.

From my POV, it's really great, as Dad's making up for the years lost to coping with Mum's dementia symptoms, and Mum's getting top-notch care.

I hope others can achieve as good a result for their folks.

Cheers,
Andrew

[prozac]

You are very fortunate that you have done the best for your parents, but don't have the usual associated guilt for putting one or both into care. Your Dad's self esteem must be shooting through the stratosphere! It's probably a good time to get your foreign orders in before he gets too busy.

[Fuzzie]

I've held off adding anything to this thread because I can't even now verbalize a satisfactory answer for myself, even though I went through the same thing a few years ago. The hardest thing for me was when my mother was phoning every few minutes forgetting she had already called and was in full blown hallucinations. I had to try and manage phone calls about things like the other me (a hallucinated 7 year old version) sitting at her dining table and my father having not come home for tea. In the midst of the conversation the other me would disappear and she would be panicking that I had been stolen. I had many loooong phone calls at night trying to talk her down from hallucinations. I live 1700kms away and trying to do the support thing, the ACATs thing and the legalities wasn't easy and a cause of much anguish.

In the end there is no correct way to handle the situation. It is a one way street and it's part of the human condition. You just have to eventually accept the inevitable. Our society and medical advancements have corralled us down the assisted care route. It's nothing to be ashamed of. Some special people have the gift of coping and caring better than others. Others have the knack of expressing their grief and care more lucidly than others. Everybody and every situation IS different but in the end we are all dead.

For the dementia sufferer they at least end up just living in the present, so I found with my mother in the later stages, although it was clear she was in a distressed state, it was less of a burden on her than earlier on when she was aware that things were wrong but still had a partially working logic and was fighting against and worrying about the decline.

One thing that occurred to me going through it was that the dementia seemed to magnify random aspects of a persons nature that already existed. For some people they just became more happy and childish while other angry personalities became aggressive and anti social. I guess it's the luck of the draw about what part of the brain is being attacked. But if you liked the person to start with it's probably going to be easier to handle the deterioration than seeing the things you didn't like become more pronounced.

For a variety of reasons my mother went through a procession of assisted care and nursing homes. Being concerned for her dignity we originally looked for places with private rooms and apparently good services, but in the end she seemed most settled in an old shared ward nursing home. Sebastian is right about the appearance of loneliness. Maybe the shared ward eased it.

I'm with prozac about the rock face, I just hope I'll be able to remember how to drive when I reach that particular curve.

To all those going through it, take care and don't blame yourselves.

[WoodJunky]

just finished reading all the posts and my heart and thoughts go out to you all.

My poor old mum god bless her heart ended up in a nursing home due to her dementia.
She hated been there and all she wanted to do was go home, well that is what she told us.

The reason I say that was in the beginning we would go and visit her and she was always very happy to see us and then she would say " have you come here to pick me up and take me home, I want to go home '. Well what could we say? as we did not want to upset her anymore.

This continued for a short time which became very upsetting for all concerned, I would have loved to take her home but was not an easy thing for us to do at the time and all my old man would say " she is in the best place where she will get the best care " but that was his excuse as he did not want to look after her. We talked to the staff there and they could not understand why she was like that as they thought she had settled in there quite well but did say that she was always upset for a while after we left, was that because we left her or because we did not take her home ?? nobody could answer that question and that included mum as well .

So, that put us in a situation where my old man would visit Mum once or more a week , but we would rarely visit. It took a long time to accept that this arrangement is for the best all round, but thankfully Mum was doing well, and that she's was OK, even good, when we weren't around.

My mum was not like some of the other mums and dads, never got phone calls, hallucinations, rage, etc, If I did I would not know how to cope with that, so I cannot give any help in that area but there has been some good comments from others and I totally agree with what Fuzzy says;


To all those going through it, take care and don't blame yourselves

[Paul39]

I think this is one disease that is harder on the caregivers than the patient.

My mother, Godmother, and now friends affected / afflicted.

There is a book that is helpful:

The 36-Hour Day, 4th edition: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life (A Johns Hopkins Press Health Book)


Authors: Nancy L. Mace, Peter V. Rabins
Manufacturer: The Johns Hopkins University Press
Keywords: Medical, generic brand
Rubric: Quicklook drug books (http://www.onlinedrugtest.info/books/quicklook-drug-books.html)
ISBN: 0801885108

Book description
Revised in 2006 for its twenty-fifth anniversary, this best-selling book is the "bible" for families caring for people with Alzheimer disease, offering comfort and support to millions worldwide. In addition to the practical and compassionate guidance that have made The 36-Hour Day invaluable to caregivers, the fourth edition is the only edition currently available that includes new information on medical research and the delivery of care. The new edition includes: -new information on diagnostic evaluation-resources for families and adult children who care for people with dementia-updated legal and financial information-the latest information on nursing homes and other communal living…

Book review: THE 36-HOUR DAY continues to be the 'bible' of recommendation for any caregiver whose family member suffers from dementia.
When THE 36-HOUR DAY appeared in its original edition it was unprecedented in its information for families struggling to care for people with Alzheimer Disease and other dementias: now this updated… Describes perfectly the changes taking place in my mother as she developes dementia. Helps me understand what is taking place and it is very helpful to know how other people have dealt with the same…

[Calm]

I had forgotten about this thread - does that mean something:no::doh::q:B:D:D

[prozac]

No David, I think that if you can remember where you left your marbles then you're ok.

[tea lady]

No David, I think that if you can remember where you left your marbles then you're ok.
I was told that its OK to not know where you left your marbles. Its when you can't remember what marbles are that you should worry.:rolleyes: (Is that to flippant? :C:U:U )