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BS: Dementia tips for carers

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Help: Talking to Mom About Dad's Care $$ (40)


ChanteyLass 04 May 13 - 05:23 PM
Kenny B (inactive) 04 May 13 - 07:12 PM
billybob 04 May 13 - 07:13 PM
gnu 04 May 13 - 08:12 PM
Rapparee 04 May 13 - 10:01 PM
Wolfhound person 05 May 13 - 05:20 AM
GUEST,mg 05 May 13 - 05:42 AM
billybob 05 May 13 - 06:34 AM
wysiwyg 05 May 13 - 07:28 AM
John J 05 May 13 - 09:13 AM
Ebbie 05 May 13 - 02:37 PM
Wolfhound person 05 May 13 - 03:34 PM
Bettynh 05 May 13 - 04:49 PM
GUEST,leeneia 06 May 13 - 09:28 AM
YorkshireYankee 08 May 13 - 08:12 PM
ChanteyLass 09 May 13 - 12:07 AM
billybob 09 May 13 - 06:48 AM
Becca72 09 May 13 - 10:59 AM
Bettynh 09 May 13 - 01:48 PM
billybob 09 May 13 - 03:09 PM
Becca72 09 May 13 - 03:32 PM
billybob 10 May 13 - 03:42 AM
SINSULL 10 May 13 - 08:54 PM
ChanteyLass 11 May 13 - 12:52 AM
billybob 11 May 13 - 04:40 AM
Mrrzy 11 May 13 - 08:08 PM
Little Robyn 11 May 13 - 09:45 PM
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gnu 12 May 13 - 03:42 PM
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Rapparee 13 May 13 - 09:15 AM
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Wolfhound person 14 May 13 - 03:45 AM
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gnu 14 May 13 - 03:58 PM
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May Queen 14 May 13 - 06:23 PM
ChanteyLass 14 May 13 - 11:49 PM
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Subject: BS: Dementia tips for carers
From: ChanteyLass
Date: 04 May 13 - 05:23 PM

Some of you have had experience caring for people with various forms of dementia. What are your tips? Here is one I learned recently and shared on another thread which led to the creation of this thread.

Apparently people with Alzheimer's at some point start to perceive anything black as a hole. Since most wheelchairs are black, they go rigid when a caregiver tries to lower them into wheelchairs because they think they are going to be dropped through a hole. One patient lived in a home with a black mat in front of the toilet and would walk around to the side and sit sideways on the toilet so she wouldn't fall through the hole (mat). (I just told my son if I ever need a wheelchair and have Alzheimer's to put a light-colored pad on the wheelchair's seat.)

Moderators, if you want to add this to another thread, please do.


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Subject: RE: BS: Dementia tips for carers
From: Kenny B (inactive)
Date: 04 May 13 - 07:12 PM

Dont be disappointed if close family member dont recognise you.
Be happy if you can leave your relatve with a smile on their face.
Sometimmes its much more difficult for relatives to handle Alzheimers than it is for sufferers.
Think of your relative as having no problems , a little passing confusion , but no worries.


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Subject: RE: BS: Dementia tips for carers
From: billybob
Date: 04 May 13 - 07:13 PM

A great idea to share our experiences here, I have shared looking after my mother who has dementia on two other threads," Janes Rainbow" and "letters from 1943," please do look if it helps,

After two years of looking after mum I am still learning about this horrid condition. One aspect that may not be addressed is other siblings who are in denial of a parents condition, there is still a stigma to mental health problems and sometimes it is very hard to come to terms that a sibling may pretend " all is well" with a parent
.
If you are in the UK and looking after someone with Dementia, Admiral Nurses are a wonderful support, they are there to help the carer not the patient and have so much experience and knowledge about this dreadful condition.

I do hope that anyone who has been touched by Dementia will join us here ,we can all learn and be supported by your thoughts

Wendy


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Subject: RE: BS: Dementia tips for carers
From: gnu
Date: 04 May 13 - 08:12 PM

Good on ya CL for creating this thrad! I am sure this thread will be of great use to many. I am gonna go back to see if reposting posts from the "other" thread may help.

They may be redundant but not if ya didn't read em already... >;-)

Here they are en masse and if some are not germain, ferget about it eh?!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass - PM
Date: 03 May 13 - 11:10 PM

Glad to pass on some info! Today I sent an email to my son telling him about some of the things I heard--just in case I develop this condition. I told him if I ever got a black wheelchair I want him to put a light-colored pad on the seat.

It's hard to believe Mudcat has no thread on this subject already. Should I start one, perhaps labelled "Dementia tips?" I am not good at finding out if threads already exist and would hate to start a duplicate thread.


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Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu - PM
Date: 03 May 13 - 02:29 PM

Good info on dimentia! There oughta be a thread?


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Subject: RE: Jane's Rainbow: for all needing support & comfort
From: billybob - PM
Date: 03 May 13 - 04:27 AM

Oh my goodness ,thank you, I didn't know about black but it really makes so much sense!. I know that in the evenings I need to keep bright lights on( I am a candle and table lamp girl) because otherwise mum thinks it is night. Now it is so light early in the mornings we need black out curtains otherwise she is up with the lark and dressed by five oclock!
Shiney floors, like in hospitals look wet so a person with dementia with stiffen up in case they slip and that itself can cause a fall! One tip I had was to have darker tones on walls if you have a pale carpet, mine are cream and the walls were coffee and cream and mum cant work out where the floor ends and the walls begin!

Its the start of another day here and mum sounds a bit wheezy so when her carer comes I will see if I can get a Doctor's appointment as it is a holiday Monday and I don't want to go three days without her seeing a Doctor?

Once the lovely carer arrives I am off to the salon to be an aromatherapist for the morning, soft music, scented candles, so I am able to escape for a while each day, so don't worry about me :-)

Sailing on,

Wendy
xxxxxxxxxx


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Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass - PM
Date: 02 May 13 - 10:42 PM

When I saw the number of posts, I wondered who did 2000. I'm not surprised that it is Spaw, not to be confused with Paws!

Paws, prayers are on their way for your friends who are ill and their caretakers.

Ranger1, I think it is good that you have taken action. I hope you and your brother can work something out.

Wendy, this morning I went to a talk about dementia, most specifically Alzheimer's. I don't know if that is the form of dementia your mother has, but I was thinking of you. I heard many things I already knew about Alzheimer's but also one that was new to me, though it has nothing to do with being able to locate a certain room. If it never helps your mom, it may help someone else. Apparently people with Alzheimer's at some point start to perceive anything black as a hole. Since most wheelchairs are black, they go rigid when a caregiver tries to lower them into wheelchairs because they think they are going to be dropped through a hole. One patient lived in a home with a black mat in front of the toilet and would walk around to the side and sit sideways on the toilet so she wouldn't fall through the hole (mat).


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Subject: RE: BS: Dementia tips for carers
From: Rapparee
Date: 04 May 13 - 10:01 PM

My MIL died this past January and from the last four months or so it was pretty awful.

It got to the point where the hospice people had to do an "intervention" and sent their chaplain over. She helped immensely to calm my MIL down.

At other times the aides would "talk her for a walk" in a wheelchair. MIL would get to the end of the corridor and start screaming that she was being kidnapped, would call the Security people (she was in an independent living community) using her panic button, etc. Afterwards I realized that with the MIL having macular degeneration and the corridors being painted in dark colors broken with light colored arches she could very well have thought she was being taken down a long, black, tunnel to...well, who knows?

We had to tell her that her medications were not to make her well, but to provide her comfort -- she had a "DNR" statement.

She did not eat or drink much at the end, and if this happens don't worry about it. They get energy from somewhere else, no, I don't know where.

By the way, I thought the title of this thread was "Dementia tips for careErs."


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Subject: RE: BS: Dementia tips for carers
From: Wolfhound person
Date: 05 May 13 - 05:20 AM

Family members should keep an eye out for couples where one is becoming the carer for the other, even if there's no formal diagnosis. We had a situation where my f-in-law was being cared for by his dutiful wife, who resolutely concealed his condition for as long as she could in an apparent attempt to "protect" her beloved son and his children from full knowledge of what was happening. (The children were teenagers at the time, not tinies).

Had we had full information earlier, we could have supported them both better, but she thought it was her duty and struggled on regardless of her own health. When he finally died of Alzheimer's it took several years before she was able to relax a bit, and several more before we found out about some of the violent and disorientating experiences she coped with.

As we all get older, we should all be aware that knowing when to ask for help and support is a vital skill in caring.

Paws


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Subject: RE: BS: Dementia tips for carers
From: GUEST,mg
Date: 05 May 13 - 05:42 AM

that is what i was going to say. know when to get help, know when it is time for a care facility. You can still visit but you should not be an advanced age and have to lift a heavy person for example..also if they are wanderers, or a danger because of fire etc. Or if they are violent or you can not keep them clean. Hopefully there are facilities for all that need them..of course there aren't but the first place we should have an econimic stimulus is nursing homes.


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Subject: RE: BS: Dementia tips for carers
From: billybob
Date: 05 May 13 - 06:34 AM

such good advice Paws,

My father refused to admit that my mother had dementia until he died at 91. He struggled on thinking if he involved a Dr they would take mum away!I tried to help constantly and even went behind his back and got mum to see a consultant who also found it impossible to persuade him.My brother agreed with him and that has caused a rift between us that still exists today. We have joint power of attorney so although mum lives with Billy and I it makes my life a constant battle.
When dad was alive mum was always nervous as she was so confused and dad and my brother got so cross when she couldn't find things in the kitchen for example.It was heartbreaking to watch both mum and dad struggling to cope!

Now mum is stress free and very happy, we are lucky and have fantastic support from her Dr, social worker and professional carers so she is never left on her own. We are working together on a memory book to share with everyone who looks after her. They know all about her family,past and present, where she has lived, holidays, hobbies, even the food, flowers and smells that she likes!

I know that one day she may have to go into a care home but I hope that may not happen,she is 89 and although her health has always been robust, I can see she is getting frailer day by day.

I could not cope without my darling husband, he is a tower of strength.

Wendy


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Subject: RE: BS: Dementia tips for carers
From: wysiwyg
Date: 05 May 13 - 07:28 AM

I saw a product online that seemed funny at first and then made total sense. It's a "wallpaper" to put onto a door you do not want your dementia'd person to open-- it looks exactly like a full bookshelf.

The best tip I can share is that when the person no longer knows that you are you-- and thinks you are someone else they remember-- just go with it. They have happiness associated with that person, probably, so let them be happy. Correcting them will only cause them hurt-- and the information will not stick anyway.

~S~


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Subject: RE: BS: Dementia tips for carers
From: John J
Date: 05 May 13 - 09:13 AM

My father is in the early stages of dementia. The decline in his mental health is mirrored by his decline in physical health - probably because he now can't look after himself as well as he once did.

He still lives alone but I visit every couple of days, bringing him meals, doing his washing and general household chores.

Care workers go in to him twice a day, every day. There's some invaluable support from the local community Mental Health team, but they're financially stretched so Dad can't get as much support as he really needs.

I've had to disconnect his gas cooker. I bought a tumble drier so I can at least walk away from him and know that he has clean and dry clothes. A favourite hobby of his is to urinate in the kitchen sink - or just wet his pants. When he wets his pants he just dries them over a radiator.

Reasoning doesn't work, he just can't comprehend - on the rare occasions he does, he just forgets.

It's VERY hard not to get cross but I try to remember that it's not his fault - it's an illness.

If you can, be cheerful with the dementia sufferer. Don't criticise them face-to-face, it just confuses and upsets them.

It's not easy. Dementia is a one-way street, it won't get better.

Next stop: a care home.

JJ


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Subject: RE: BS: Dementia tips for carers
From: Ebbie
Date: 05 May 13 - 02:37 PM

A good friend of mine for the last few years of her long (97 years)life no longer recognized her daughter, Marie, although she recognized and welcomed me. It upset her daughter needlessly; I tried to get it across to her tactfully that she simply didn't recognize the whitehaired woman her daughter had become. She still talked fondly of her daughter but she thought of her as the kid she had always known.

Is there a better way to handle something like that? It simply broke Marie's heart.


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Subject: RE: BS: Dementia tips for carers
From: Wolfhound person
Date: 05 May 13 - 03:34 PM

I had something similar, Ebbie - my mother assumed in her last years that I was her younger sister,and kept asking after "mother". My aunt had died some years previously: my grandmother died before I was born.

I worked out in the end that she had completely elided the 60 years of her married life and reverted to somewhere in the middle of WW2 - this was I think, to explain to herself why she was living in a home with other women in a strange place. She thought she was a refugee of some sort.

Paws


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Subject: RE: BS: Dementia tips for carers
From: Bettynh
Date: 05 May 13 - 04:49 PM

If a frail loved one suddenly becomes much worse it's probably a good idea to check their physical status - in particular, I've seen many people who became very confused and combative suddenly that had urinary infections. Treatment of the infection often helped the confusion. And I don't know the physiological connection - it's just something I saw when I was a nurse. One physician routinely prescribed vitamin C supplements daily in the belief that acid urine was less likely to become infected. (Vitamin C will be excreted by the kidneys unchanged once the body's needs are met.) Infected urine often smells of ammonia.


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Subject: RE: BS: Dementia tips for carers
From: GUEST,leeneia
Date: 06 May 13 - 09:28 AM

Ebbie, how about suggesting that your friend dye her hair or get a wig so she looks the same as she did when younger?

Although, re-reading your post makes it seem that Marie's mother has died already.


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Subject: RE: BS: Dementia tips for carers
From: YorkshireYankee
Date: 08 May 13 - 08:12 PM

My mother has (officially) had Dementia (probably Alzheimers) for nearly a year now (although looking back over the last 10+ years, that sure explains a lot).

I spent most of this past March and April helping my parents downsize/pack/get rid of stuff (from a BIG house) and move to a (MUCH smaller) apartment in a place where they will not have to worry about cooking & cleaning, and where assisted living and "memory care" will be available when needed.

The most stressful part of the entire seven(-ish)-week period was trying (to no avail) to get my mother to be realistic about how much she needed to discard before the move. Friends who'd been through the same kind of thing all said, "Have her decide what to keep, rather than try to sort through everything trying to decide what to leave behind." Excellent advice, but...

We explained, reasoned, explained again, begged, argued, begged again, lost our tempers (we could see that Mom's stress and panic in trying to sort through EVERYTHING before moving day was making her much worse) and (sometimes) yelled (I feel badly about that, but remind myself that I was completely stressed and exhausted as well, and am only human), begged some more -- and in the end the movers looked in disbelief at the masses of stuff Mom insisted on bringing along and queried, "Couldn't you persuade her to bring less?" sigh...

Many, many, MANY people suggested just putting her stuff in storage until she forgot about it, then getting rid of it. Or even just saying it was going into storage and then getting rid of it. My Father feels that lying to Mom would be a betrayal. I respect and admire his resolve to be honest with her, but I also see how it is going to make his life much more difficult...

Here is what I learned to do -- that I dearly wish I'd known at the start of this endeavor, and which I share here in the hope that it may help someone down the road:
Don't ask your loved one to decide what to keep and what to leave behind. If they're anything like my Mom, it tears them to pieces to make those decisions. What's worse, the decision doesn't stay made, because if you cannot immediately remove the item(s) they managed to decide to discard, they will not remember their decision and will have all the stress of trying to make up their mind about it again -- say 15 minutes later, and then an hour or two after that, and then the next day, etc.

DO ask: What do you use every day? What do you use every week? Every month?

I came up with this approach when trying to prioritize where Mom's clothes should go; figuring that the stuff she wears most often should go in the highest-visibility places. She frequently asked what would happen to the clothes she didn't pick -- anxious I would throw them out -- but was OK with the idea that they would go into drawers that were in less convenient places. This was SO much more effective than trying to get her to let go of things (even things that are irrecoverably ripped or stained, she can't bear to throw away; "I can wear it around the house..." My guess is that it has a lot to do with growing up during the Depression and having a dad who was often unemployed.)

As for my own honesty/"betrayal"? I was mostly honest, but there were times when I got rid of things when she wasn't looking -- especially the aforementioned badly stained and/or torn items of clothing. I'm not sanguine about lying to her; it still bothers me. I feel I did it "for her own good," but I also know it's easy to make rationalizations for behavior that's wrong as well as right. I'll have to live with what I've done, and know that I did it out of love (and -- to be honest -- impatience, and a feeling of desperation).

That's all I can write at the moment; more later...


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Subject: RE: BS: Dementia tips for carers
From: ChanteyLass
Date: 09 May 13 - 12:07 AM

Sometimes lying is the best policy. When my uncle was in a nursing home, he would often ask when certain people were coming to visit him. At first I reminded him that they had died. For him it was like hearing that for the first time each time. Fortunately I learned to lie before he asked me when his late wife (my aunt) was coming to see him--a question I'm surprised he did not ask much sooner. I said that she was too tired to come that day but sent her love and would see him as soon as she could. When he asked about other people who had died, I started telling him that I didn't know, or maybe tomorrow, or in a few days.


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Subject: RE: BS: Dementia tips for carers
From: billybob
Date: 09 May 13 - 06:48 AM

I have learnt not to give my mother a choice, just saying "would you like a cup of tea or a cold drink " can cause panic. So I just say " I think a hot /cold drink will be nice". I put mum's clean clothes out for the morning when she goes to bed and whisk the worn ones into the laundry quick as mum would wear the same things every day. However she often puts on two vests or blouses if I'm not looking! As long as she doesn't look silly does it matter? No one knows what is underneath but me.

Luckily I was able to clear her bungalow without worrying her as she had already come to live with Billy and I , I brought all her bedroom furniture and pictures and ornaments that she loves. Everything we had no room for is stored in my loft but she never asks where anything is! She never mentions her bungalow but often talks about living in our house in London ( we moved from there in 1960)

I find it is best to agree with everything she says ,that gives her peace of mind, but don't ever feel guilty if you get cross or shout, we all get to the end of our tether at times, when I do I get on the laptop and go to " Jane's Rainbow thread" The crew there are always ready to listen.

Wendy


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Subject: RE: BS: Dementia tips for carers
From: Becca72
Date: 09 May 13 - 10:59 AM

Just for the sake of clarity, Alzheimer's is a specific disease, while dementia is a symptom that can have multiple causes.

I have to dispute Kenny's statement above that this disease is much more difficult for the relatives than the sufferers; It has been my personal experience that the sufferers know there is something wrong.
I found this on the web broken into stages of the disease:

Middle Stage Symptoms:

•Difficult behaviors emerge
•Anger, suspiciousness, overreacting and paranoia
•Repeating questions or statements
•Fear of bathing, Hallucinations, Eating problems
•Hoarding belongings
•Inappropriate sexual behavior
•Violent behavior
•Help in choosing clothes ,remembering to change clothes, help getting dressed.
•Will progress from needing reminders regarding personal care to needing help bathing, taking medication, brushing teeth, toileting, etc.
•Increased difficulty in verbal expression and comprehension
•Spatial problems (e.g., having trouble setting the table)
•Loss of reading, writing and arithmetic abilities
•Loss of coordination
•Will need care or supervision 24 hours a day, seven days a week
•May not recognize family and friends at times


Late Stage Symptoms:

•Inability to communicate
•Inability to recognize people, places and objects
•Loses ability to walk
•Loses ability to smile
•Muscles may become contracted
•May lose ability to swallow
•Seizures may occur
•Weight loss
•Majority of time spent sleeping
•May exhibit a need to suck on items

My mother developled dementia and became a whole different person, in a positive way. The mean-spirited, bitter woman I knew became someone who actually laughed and smiled - something I never saw growing up. My grandmother had Alzheimer's and went after her own daughter with a knife and was prone to other violent outbursts...


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Subject: RE: BS: Dementia tips for carers
From: Bettynh
Date: 09 May 13 - 01:48 PM

I'm somewhat ambivalent about using the term "Alzheimer's disease." When I started nursing in the 1970s, it was barely recognized as a diagnosis (insurance companies refused to pay for it). As I understand it, absolutely accurate diagnosis is still only possible by autopsy. I'm not denying that the disease exists or that many people suffer from it, but sometimes dementia results from more treatable illnesses that doctors stop looking for. I don't know if it's a good thing for patients and families to identify the mental decline they're seeing as "a disease" which has no predictable course. For my mother the diagnosis of Parkinsonism led to depression which was as difficult to deal with as her physical symptoms.


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Subject: RE: BS: Dementia tips for carers
From: billybob
Date: 09 May 13 - 03:09 PM

I think that an MRI can give a clue to Diagnosis but ,as with my mother, the distress of the MRI would outweigh any benefit of knowing if her dementia is vascular or Alzheimers.

At the moment she is happy in her situation, her smile is wonderful to behold. But my grief of not having my mother here as I once knew her is quite heartbreaking, so I have to disagree with Becca. We do everything we can to make mothers life as stress free as possible, she is as loving and delightful as she always was, no signs of bad temper or violence.

The meaning of Dementia? From the latin Dis...away from Mens ...the mind.

I am reading " Contented Dementia" by Oliver James at the moment, it has opened my eyes to what I have been doing wrong and also ,thank goodness where I have been doing things right! I recommend the book to any carers.

Wendy


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Subject: RE: BS: Dementia tips for carers
From: Becca72
Date: 09 May 13 - 03:32 PM

Billybob, you'll note I was speaking of patients diagnosed with Alzheimer's, not dementia.


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Subject: RE: BS: Dementia tips for carers
From: billybob
Date: 10 May 13 - 03:42 AM

that is the diagnosis my mothers consultant has given her although she has not had an MRI , she is on the medication for Alzheimers,
Wendy


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Subject: RE: BS: Dementia tips for carers
From: SINSULL
Date: 10 May 13 - 08:54 PM

One of the saddest moments I remember from a dear friend's final years was the day she went into a complete panic when her daughter came to visit. She thought she was looking at and talking to herself. Apparently her daughter looked a lot like her in her twenties. The daughter had to leave to let her mother calm down.


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Subject: RE: BS: Dementia tips for carers
From: ChanteyLass
Date: 11 May 13 - 12:52 AM

I don't know if all of you will be able to get to this link, but this is about preserving memories when a loved one's memory is failing. And it ends with the mother and her adult daughter singing a lullaby. http://storycorps.org/listen/rebecca-posamentier-and-carol-kirsch/


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Subject: RE: BS: Dementia tips for carers
From: billybob
Date: 11 May 13 - 04:40 AM

That is so beautiful, thank you Chantey lass

Wendy
x


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Subject: RE: BS: Dementia tips for carers
From: Mrrzy
Date: 11 May 13 - 08:08 PM

Serious thread. Sorry to have misread as Tips for Careers...


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Subject: RE: BS: Dementia tips for carers
From: Little Robyn
Date: 11 May 13 - 09:45 PM

I was working with a group of adult Down's people and noticed a pattern as they approached 60 years of age. Some just slowly aged so that by 65, they were like 80-90 year olds, but the others developed a form of dementia in their mid 50s - early 60s where they slowly forgot how to talk and to walk and lost the ability to do things they had been really good at when they were younger. They all loved knitting so as long as they weren't getting too frustrated with it, it didn't matter if their stitches were doubling in number or making holes everywhere. When that became a problem, they were just happy to hold a ball of wool - wind it up then unwind it, as long as they had something familiar in their hands. When I last saw H on her 70th birthday she was just slumped over at the table. I spoke to her and put some wool in her hands and she came alive again - just for a short while.
While they were still able to walk, we had to walk them down the hallway to the bathroom and as we reached the edge of the carpet and the start of the lino they would stop and look down and freeze. It did seem like a hole to them. We had to distract them to get over the 'hole'. With C it was singing - I'd start one of her favourite songs - 'I love to go a-wandering along the mountain track, And as I go I love to sing my knapsack on my back. Valdereeee......' and by then we'd be marching down the passage way, happily keeping step with the song.
For B it was different. He didn't sing but he loved marching - his brother was in the army, so I would start Left, Right, Left, Right and we'd be off.
These people were born at a time when a Down's child didn't have much future - their life expectancy was maybe 20 - 30 years if lucky, but the 'children' who lived at Hohepa Homes in NZ were taught many life skills - crafts, farming, woodwork etc and many have lived well into their 60s and 70s. But the dementia at the end is a cruel trick for life to play on them.
Robyn


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Subject: RE: BS: Dementia tips for carers
From: VirginiaTam
Date: 12 May 13 - 01:56 PM

Black = hole. That explains something a bit.

TSO's Mum has been having episodes (more frequent, long and alarming lately) for a couple of years. The first indication something was not right, was that she put her rubbish from eating an icecream (last bit of cone and napkin) into very highend shopping bag sitting on bench beside its owner. It was shiny black and rectangular bag. I had to apologise to the woman who was quite upset and unwilling to accept apology from me.

Evidently Mum thought she was seeing a black bin. She was unfazed by the whole event, even when we explained that it was someone's carrier bag full of shopping. All very uncharacteristc.

We are all (TSO, myself, TSO's sister and her husband) now looking at how to deal with her condition. TSO's Dad is 95 and not coping well as she often does not recognise him and has lately taken to going AWOL. They live 3 hours away from us and 2 hours away from their daughter. We have been taking it in turns to visit at least one to two times a month to give Dad a break.   

What I find, when Mum keeps trying to tell me about her American daughter in law (me), is to just go along with it. I ask her if she visits often? Does she enjoy the visits. I keep questions simple. Yes or No answers only. Having to think or force memory can often exacerbate an episode as it puts her in stress.

When we go out to meal (every visit) I look at the menu with her and ask her if she would like items, one at a time. She often gets befuddeld by the menu. The last few times it was much easier when I just said, "Would you like the lamb?" "Or would like the fish and chips?"

I have noticed that when Mum takes a tipple she has bad episode within an hour. This makes me think it is vascular dementia. Nurse just visited last week and offered nothing more than advice on getting meals delivered and someone to come in to clean and some leaflets from Age Concern. None of which they need. They have been able to cope with shopping, cooking and cleaning. We still don't have a definitive diagnoses. No tests done. I suspect they both keep playing it down. We have had been tagged by the landlord of the pub where we eat and from friends and neighbors about how bad it is getting. They want phone numbers from us so they know who to call when she is wandering. We don't know how to progress a proper medical diagnoses at such distance.


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Subject: RE: BS: Dementia tips for carers
From: Bettynh
Date: 12 May 13 - 02:23 PM

My dad loved meal deliveries, even when I was there to cook. It was a visit from a vaguely familiar (but not emotionally familiar) person who usually stopped to chat for a few minutes. The delivery person always insisted on actually seeing Dad when the delivery was made - it's a welfare check as well. If the food wasn't eaten, it was really beside the point of the whole operation.


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Subject: RE: BS: Dementia tips for carers
From: gnu
Date: 12 May 13 - 03:42 PM

Bettynh... yeah. I used to do meals for seniors in my neighbourhood. It was very gratifying. Had to stop for an odd reason but I won't get into that. Sadly, all of them are now gone but there is a lad just opposite me whose wife just passed "abruptly" before she should have. He is having a hard time... NEVER cooked a meal. I have been taking over food a couple of times a week and he might just be ready to accept a simple "meat and veggies crash course.


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Subject: RE: BS: Dementia tips for carers
From: Bat Goddess
Date: 12 May 13 - 04:22 PM

I well understand the stresses of being a caregiver -- even though in my case, the situation doesn't involve Alzheimer's or dementia. (For which I TRULY thank God!)

I've been taking a free 6-week course "Powerful Tools for Caregivers" sponsored by NH ServiceLink, which is an aging and disability resource center and RiverWoods. Basically the course deals with helping the caregiver take care of themselves so they can continue caring for the care receiver. There are really good chapters in the course book (and covered in class) on communication and on dealing with emotions -- both especially useful in dementia cases.

Here is the website - Powerful Tools For Caregivers

I think you'll have to check with local elder support agencies to find where you can take the class.

About half of the caregivers in the class I'm taking are dealing with dementia which has a whole different level of problems from those of us just coping with physical disabilities. But I've learned a bit from the experiences of those in the class. And the major thing is to learn to let go. It doesn't do anybody any good to get angry, frustrated or just plain sick of answering the same question over and over. They're not doing it to spite you. If you get upset you're just hurting yourself and the added stress can literally make you sick. And the care receiver won't remember that you're upset, they're upset, or what you just told them. So just let it go.

I highly recommend the class. And after this week's class (the last) and I finish reading the book and photocopying pages of resources, etc., I'm sending the book to my sister who is caregiver to my mother (in a distant city from me) and who needs the information desperately.

Linn


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Subject: RE: BS: Dementia tips for carers
From: Wolfhound person
Date: 12 May 13 - 05:23 PM

VirginiaTam

The situation you describe sounds ominous to me. If the neighbours think there is a problem, then there probably is - they see your in-laws every day or so.

When you visit from away, both will probably try and be on their "best behaviour". They may well be less able to manage than you think.

Getting a formal "assessment" of both their capabilities by the social services is the next step, to the best of my knowledge.
That then means that they are on the radar if / when something should go wrong and you will have less emergency firefighting to do from a distance.

The only other option is moving them nearer to you, or moving yourself - and I'm guessing both are out of the question.

Paws


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Subject: RE: BS: Dementia tips for carers
From: billybob
Date: 12 May 13 - 05:40 PM

Once again I do urge any carers to read " Contented Dementia" by Oliver James

Three golden rules, Don't ask questions at all, really very difficult but ALWAYS causes stress,
Be led by the dementia sufferer, they are living in a different time to you and me.
NEVER disagree, it will cause you both stress and unhappiness.

V Tam, do get your mother in law diagnosed asap, for your father in laws sake as well as hers. Contrary to what most people think there is a lot of help in the UK, personal budgets, Admiral Nurses, etc. but until they confirm the illness nothing will happen. Also for goodness sake get power of Attorney for health, it will be very important and takes ages to process.

Wendy


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Subject: RE: BS: Dementia tips for carers
From: Rapparee
Date: 13 May 13 - 09:15 AM

Take a break.

Get away, let someone else do it even if you pay them. A week in a spa or at a folk festival -- just something different, very different. You'll come back refreshed and better able to deal with the problems; you may even have found answers you didn't know were there or that you've decided to implement something you were undecided upon.

Take a break.


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Subject: RE: BS: Dementia tips for carers
From: VirginiaTam
Date: 13 May 13 - 02:12 PM

Ta Wolfhound and BillyBob

We TSO and his siter tried over 8 years ago to get Lasting power of Attorney, which actually Mum and Dad had initiated. But when they saw the cost of it (over £1750) they absolutely refused. Not that they couldn't afford it. Thinking back now TSO and his sis wish they had offered to pay part of it to ease the sting a bit.

The really worrying thing is that Dad put all his money, bank accounts, and deed to flat in Mum's name, because he expected (based on his age and state of health - really quite fragile) that he would go first. Now that she is no longer compos mentis, he is very worried. He doesn't know what to do. We are all under the impression that once the person is no longer compos mentis, you can't get lasting power of attorney.

TSO is trying to arrange a weekend when he and his sister visit and have sit down discussion with both of them about it. From making proper appointment with GP and not the practice nurse ad getting an a real diagnoses, to discussing options for care in their current home or moving to accommodation or moving nearer to TSO or his sister.


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Subject: RE: BS: Dementia tips for carers
From: billybob
Date: 13 May 13 - 07:11 PM

We had the same problem, my father didn't do LPA, after he died we got power of attorney for mum but it took 14 months. You can get it if your mother in law is not compos mentis through her doctor and a solicitor, but maybe get father to do his now? Also maybe have a word with Richard Bridge for advice?

lots of love Tam

Wendy xxx


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Subject: RE: BS: Dementia tips for carers
From: Wolfhound person
Date: 14 May 13 - 03:45 AM

Lasting power of attorney (UK, or England at any rate) is a lot more complicated now than it was a few years ago when I had to do it (it was a 30 quid letter from a solicitor then), but get them at all costs (I question the 1750 - get a 2nd opinion!) because it means you can operate bank accounts etc etc.

Sounds like a weekend "sorting it all out" and getting a care plan in place is a really good start.

Then at least you and the other rellies will know where you all are. It probably won't get any easier (small comfort, I realise), but at least you'll have a handle on things. My thoughts go with you - there's always the Jane's Rainbow thread when you need extra help and good thoughts from a wonderful bunch of people.

Good luck

Paws


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Subject: RE: BS: Dementia tips for carers
From: billybob
Date: 14 May 13 - 05:46 AM

I agree with Paws,

There are two Lasting Power of Attorney in the UK now, one for property and finance and one for Health and welfare, it cost me just under £1500 to do mum's,( mainly Solicitor fees!!) my brother and I share jointly but also we added my daughter and son as replacement attornies in case Tony or I were unable to fulfil our roles!

One of my clients recently had to do it for her mother who had Dementia, she completed the application on line and didn't use a solicitor, but it was very stressful. She had her mother's Dr certify that her mother was not compos mentis and I think it has gone through quite quickly.

hope that helps Tam

Wendy


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Subject: RE: BS: Dementia tips for carers
From: gnu
Date: 14 May 13 - 03:58 PM

Subject: RE: BS: Dementia tips for carers
From: billybob - PM
Date: 12 May 13 - 05:40 PM

VERY wise words.


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Subject: RE: BS: Dementia tips for carers
From: VirginiaTam
Date: 14 May 13 - 04:22 PM

Thanks for the advice. Yes! Very useful.


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Subject: RE: BS: Dementia tips for carers
From: May Queen
Date: 14 May 13 - 06:23 PM

This is a great thread, thankyou to all who've posted advice. My mum is 2 years into a diagnosis so all these tips are invaluable both for now and for future deterioration.

Im particularly interested in music keeping a dementia sufferer active mentally. Folk song is something I thought my mum knew nothing about but turns out English schoools used to teach a lot (she was a primary age teacher as well as obviously a pupil herself). Its a great area we can share. I was thinking of posting a thread about songs taught via the BBC in British school in the 1950's onwards unless anyone knows of a similar resource? Sorry if this may cause thread drift...


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Subject: RE: BS: Dementia tips for carers
From: ChanteyLass
Date: 14 May 13 - 11:49 PM

That sounds like it would make a great thread.


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Subject: RE: BS: Dementia tips for carers
From: GUEST,VaTam on her Tab
Date: 15 May 13 - 02:55 AM

Yes. Even though Mum is not into music, she never had the attention span to listen properly, she does love it when Dad starts singing and whistling. He knows loads and used to sing in Bach choir. So when he starts singing it sort of brings her back to us.

When Dad calls us to help him comfort her during an episode, I always suggest that he go along a bit when she does nit recognise him, maker her a cup of tea and ask her to talk about what Arthur (Dad) looks like, his interests, indicating that he would like to meet him. Then while making tea start singing something she is familiar with.

I should mention that at last vist she was convinced that TSO was her husband and not her son. TSO looks nothing like his Dad. Beside having long hair and beard his Dad never had, he has his Mum's facial features.

So her imagination must be working overtime when this happens. There have been so incidences of mixed up memories cobbled together as well.

I am finding this thread a great boon to helping cope with being on the sidelines regards Mum and Dad in law. I love them dearly, but am not in position to butt in.


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Subject: RE: BS: Dementia tips for carers
From: Joe Offer
Date: 15 May 13 - 03:21 AM

Grandma's 98 and still here, but it seems like she's on the way out. My wife takes care of her all day, and I stay up later and get the duties later. My mother-in-law was pretty good until about two years ago, but it has been tough since then - especially the last three months, nothing we can do keeps her happy for very long. She's confused, and has some hallucinations. She'll ask a question and we'll give her a very patient explanation; and then she'll ask the same question five minutes later.

But she doesn't want to die, and she keeps hanging on. Every day, I think she's only going to last a few days, but she's still here. I suppose some morning we'll wake up, and she'll be gone. I wish we had the energy to sit beside her all the time, but we just don't.

It's hard.

-Joe-


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Subject: RE: BS: Dementia tips for carers
From: billybob
Date: 15 May 13 - 03:47 AM

Dear Joe, hang in there, you and your wife are doing so well I know how hard it is.

Do try and get the book I recommended, " Contented Dementia" I have found in just one week since reading it MY stress levels have gone down! Remember that when Grandma asks the questions , in her mind it is the first time she has asked you. In the book they teach you a form of word "ping pong" when she asks a question answer with a phrase that reminds her of a past pleasure she , hopefully, will respond with a phrase related to that, then you "bat" another phrase back. I know it sounds odd but it sometimes works!

In a way it is a form of distraction, just like we employ with the little grandchildren. There is a big similarity in the two stages of life!

Will keep you in my thoughts Joe,

Wendy xx


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Subject: RE: BS: Dementia tips for carers
From: GUEST
Date: 15 May 13 - 06:59 AM

If a frail loved one suddenly becomes much worse it's probably a good idea to check their physical status - in particular, I've seen many people who became very confused and combative suddenly that had urinary infections
Happened to my mother and was caused by severe constipation which she had done nothing about.

One problem is that the decline can be very slow and, until something dramatic happens, you don't always appreciate the full extent of the change until much later.


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