Dementia news item ... Sooooo annoying!

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Tonight's news item says that people with dementia are going into care too early because carers don't realise how much support is available to keep them in their own home...

RUBBISH...

My dad cares for my mum and has asked and asked for more support but there is nothing else available in their area other than the 2 (short) days she goes to daycare.

An item on local news to say fantastic news - £1000 will pay for a support worker to visit a family once a week for a year to give dementia support...

WHOOOPEEEE...

A support worker visiting once a week to a carer is nothing when the carer is caring 7x 24 hours a week.

Dementia sufferers are best cared for in heir own homes.

Carers feel guilty enough about putting their loved one into a home without listening to this crap from people who obviously have no experience of caring for a dementia sufferer!

Thank you, rant over

If this has become the thread to vent about parents with dementia then I'm in! I've posted before on Elderly Parents but my thumbnail sketch: mid 40's 2 kids, work 4 days a week. Main family breadwinner. Mum died 18 years ago, dad diagnosed with Alzheimers 2 years ago, lives with my brother who has severe mental illness, i suspect schizophrenia. Brother has in the last year deteriorated markedly and I am trying to get specialised help for him. So far nothing seems to work, but that's another story. No other relatives nearby, Dad has 3 siblings who all live abroad. He lives about 90 miles away. This situation is scary and i struggle on a daily basis not to succumb to anger and resentment. I am Dad's only family support, although he has always been a sociable guy and has a very supportive church and small circle of friends (to whom i shall be eternally grateful).
Dad is slowly but surely losing his memories and intellectual capacities. It's all so sad, he used to be an academic, now can't remember close family members- he thinks my brother is some sort of lodger.
At this stage i am focusing on handling his affairs (have POA, thank God) and maximising his quality of life so I take him out for meals, invite him over to my place (so far touch wood he gets here OK on public transport), take him to concerts and over the last 5 years we've done about 4 holidays. I know when the time comes though he will need to go into residential care. I am in no way deluded about ever being able to care for him till the end. Those who say (and i have had colleagues spout this kind of stuff out at me) "I'll never put my parents in a home" or "never put me in a home" just have no idea of what dementia care entails, day in day out. 9 months ago I got to a point where i struggled to get through a day without crying, so now I go for weekly counselling sessions and it's really helped. One pernicious aspect of dealing with a demented relative is guilt, which I still have to tackle head on before it drags me into martyr territory and my DH, DCs and myself all suffer. I also don't sweat the small stuff where at all possible- so his bedroom's a tip- he couldn't care less, on the other hand I got the boiler fixed and took him to meet his friends at a concert, so I feel OK about things.

The phrase "putting xxx in a home" should be banned.
"Xxx is going to live in a care home" sounds sooo much better.

My mil lived in a care home, she loved it and thrived in it

The phrase "putting xxx in a home" should be banned.
"Xxx is going to live in a care home" sounds sooo much better.

My mil lived in a care home, she loved it and thrived in it

My mil moved into a care home approx six months ago and it has been entirely positive.
For her, for her family and for all those who love and care about her.
Putting someone in a home is not dumping them or getting rod of a problem, it is meeting their needs. She always said she wouldn't go into one, had a sash of pills ready but when it came to it the dementia meant she was glad of the extra company and care.

I will really go for anyone who ever says they wouldn't put a parent in a home . The more I've read about Dementia, the more I believe in the overwhelming majority of cases it is the only safe option as ultimately the care required will just be too much for one person. I've compiled a short list to look at after Easter.

This morning I'm meeting the Tracker Nurse at Mums and we're going to try to persuade her to put her meds in a locked box so the carers can distribute each morning. I think she'll go nuts but am clinging to the fact she likes the Tracker Nurse and may just do what she suggests. If not I'm just going to have to grab the packets , shove thin the box and close it knowing I'm much faster than she is . My stress levels are already sky high and it's not even 8am.

I don't sweat the small stuff. Mum's room is a mess. But her bed is now clean and the mattress doesn't fall off and the sheet stays on so that's fine. She's not allowed out on her own and doesn't have the mobility to do it. My brother has just accepted she's not able to make it to Europe this summer so we're trying two nights in Cornwall. And then just to add a further stress my 87 year old FIL who lives on his own in Spain as he won't come back, has Parkinson's. In the. Last couple of weeks he's had one episode where he was stuck in his chair for 3 hours and another where he fell over in a shop and knocked two teeth out.

WynkenBlynkenandNod - how about telling your mum that the doctor says that the medication has to be kept in a locked box . Sometimes they take it better if someone in authority says so rather than family.

Good luck

I think it is ok for some dementia patients to be cared for in their own home, it wont be a suitable option for all.

Sometimes a carehome is the only safe place for them.

For us, I think we can count three stages of mums illness. The point before she got the diagnosis, which was its own special nightmare, lasting around 3 years. The time between her diagnosis and her moving into a carehome which was not long but hell on earth the 7 months it lasted, as she deteriorated so rapidly, and put herself and the house at serious risk. Cooking at night and forgetting the oven on, packing to go home and wanting to walk out in the middle of the night when everybody was sleeping because she did not realize it was night still, or that she was at home already. And now, in her own world at the Carehome, happy mostly, and safe.

Thanks Membershipcard. The Nurse handled it beautifully, it's all now in a sturdy box with combination lock and Care Agency have the code. Mum thinks the box is smart and did protest but not too badly.

However, I now have to go to GP this evening as the Nurse thought I looked hypertensive and indeed my blood pressure is higher than I've ever seen it . I'm not surprised really.

Quint, I am sorry what you've been through but I do find your post reassuring that she's mostly happy in the Care Home, gives me hope.

She is much happier. She thinks she works there, and has staff accommodation!

Oh how lovely . I'm going to look after Easter at some homes after I've hopefully calmed down a bit. What I forgot to say is that Nurse persuaded her to try a lunch club type thing after Easter and I am going back to work now Mum's more sorted, plus DD's GCSE options are being submitted today so hopefully one less thing to worry about.

My blood pressure has gone up too. Before I had all this stress it used to be low to the point that I'd sometimes feel dizzy. Now it's gone above normal. I'm trying to cut back on salt.
I'd like Dad to go to a lunch club too. He's lost a fair bit of weight. Not sure how he'd get there though, I'm not around to take him there. The psycho geriatrician is visiting next month and as all "services" we were offered have so far come to nothing- no cognitive stimulation, no agency cleaners (they bailed out after 2 visits), no admiral nurse (my brother didn't engage with her) I feel I need to insist now but not too sure how to go about it. Any suggestions would be gratefully received.

Do you have the same GP as your Dad ? If not, would they discuss things with you ? I've found the key is to find on sympathetic health professional who will then push for you. Hopefully some of the others will know than.

With the lunch club I've been told Mum will be eligible for transport so hopefully your Dad will be too.

Thanks wynken. No, we have different GPs as live in different towns. But I know the GP well and he is always very helpful. Dad has given permission for stuff to be discussed wi me. As dad has more than£23 thou in assets I suspect he may have to pay for his transport? But it should still be worth, he ll have to be convinced as he s a bit of a penny pincher.

Ah yes Bob he might have to. But he also might not need to as the groups we were looking at are from Age Concern I think. I said to the nurse, do I mention she's being seen at the memory clinic to access the transport and she said yes. Then saw the memory advisor's sticker on the list and said to ring her.

As his GP is helpful I definitely would have a go with him. I personally would go from the angle that you are worried about your Dad not accessing the services in part due to your brother and that it has had a major impact on your health which in turn impacts your children.

My Mum doesn't really want to go to a lunch club but 3 health professionals have said she should so she's giving in, especially as there is transport so can't argue she can't get there.

I found this on the Alzhzeimers website and thought it may be useful to many of us.

Compassionate Communication with the Memory Impaired

by Liz Ayres
A Volunteer of the Alzheimer's Association and Former Caregiver

DON'T
Don?t reason.
Don?t argue.
Don?t confront.
Don?t remind them they forget.
Don?t question recent memory.
Don?t take it personally.

DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something?s wrong (even if it?s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.

Remember

You can?t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.

They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them ... always. For example: they don?t hide things; they protect them in safe places... And then forget. Don?t take ?stealing? accusations personally.

Their disability is memory loss. Asking them to remember is like asking a blind person to read. (?Did you take your pills?? ?What did you do today??) Don?t ask and don?t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (?You need a shower.? ?Day care will be fun.? ?You can?t live alone.?) Don?t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don?t argue, correct, contradict, confront, blame, or insist.

Reminders are rarely kind. They tell the patient how disabled they are ? over and over again. Reminders of the recent past imply, ?I remember, I?m okay; you don?t, you?re not. ?Ouch! Refer to the present or the future. (If they?re hungry, don?t inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it?s the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won?t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn?t work, be kind ... don?t remind.

Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, ?I was just thinking about . How did you two meet?? You might even try, ?He?s gone for a while. Let?s take our walk now.?

Open-ended questions (?Where shall we go?? ?What do you want to eat/wear/do??) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, ?You look great in the red blouse.?

They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can?t remember your reassurances. Keep saying them.

Examples

Don?t reason

Patient What doctor?s appointment? There?s nothing wrong with me.?
Don?t (reason) ?You?ve been seeing the doctor every three months for the last two years. It?s written on the calendar and I told you about it yesterday and this morning.?
DO (short explanation) ?It?s just a regular check-up.?
(accept blame) ?I?m sorry if I forgot to tell you.?

Don?t argue

Patient ?I didn?t write this check for $500. Someone at the bank is forging my signature.?
Don?t (argue) ?What? Don?t be silly! The bank wouldn?t be forging your signature.?
DO (respond to feelings) ?That?s a scary thought.?
(reassure) ?I?ll make sure they don?t do that.?
(distract) ?Would you help me fold the towels??

Don?t confront
Patient ?Nobody?s going to make decisions for me. You can go now ... and don?t come back!?
Don?t (confront) I?m not going anywhere and you can?t remember enough to make your own decisions.?
DO (accept blame or respond to feelings) ?I?m sorry this is a tough time.?
(reassure) ?I love you and we?re going to get through this together.?
(distract) ?You know what? Don has a new job. He?s really excited about it.

Don?t remind them they forget
Patient: ?Joe hasn?t called for a long time. I hope he?s okay.?
Don?t (remind) ?Joe called yesterday and you talked to him for 15 minutes.?
DO (reassure) ?You really like talking to Joe, don?t you??
(distract) ?Let?s call him when we get back from our walk.?

Don?t question recent memory

Patient ?Hello, Mary. I see you?ve brought a friend with you.?
Don?t (question memory) ?Hi, Mom. You remember Eric, don?t you? What did you do today??
DO (short explanation) ?Hi, Mom. You look wonderful! This is Eric. We work together.?

Don?t take it personally!

Patient ?Who are you? Where?s my husband??
Don?t (take it personally) ?What do you mean ? who?s your husband? I am!?
DO (go with the flow, reassure) ?He?ll be here for dinner.?
(distract) ?How about some milk and cookies?? .. Would you like chocolate chip or oatmeal?

Do repeat exactly

Patient "I'm going to the store for a newspaper."
Don?t (repeat differently) "Please put you shoes on."
"You'll need to put your shoes on."
DO (repeat exactly) "Please put your shoes on."
"Please put your shoes on."

Do eliminate "but", substitute "nevertheless"
Patient "I'm not eating this. I hate chicken."
Don?t (say "but") "I know chicken's not your favorite food, but it's what we're having for dinner."
DO (say "nevertheless") "I know chicken's not your favorite food, (smile) nevertheless I'd appreciate it if you'd eat a little bit."

Signing in here and sympathy to all. It's a horrid illness and really tough finding the right solution. MiL has recently gone into a home temporarily (since they flooded their house) and is desperately unhappy there but clearly has better care than we were managing before. FiL wants her back home too, (even before the ceilings have been replaced and redecorated), and is refusing to accept that he can't manage his own care, let alone hers any more. It's all very difficult.

Thanks membership card. I do get where this liz ayers is coming from, but Jesus, you need the patience of a saint to get it right every time. The only hope for those who are carers is to get help/ time out regularly, otherwise in my opinion there s no way one can sustain such a patient, selfless attitude.
I'm sure it does work best for those who are at the receiving end though.

There is no way anyone can get it right all the time but it can only help the sufferer if we, at least, know what may make things worse.

The piece is very idealistic

I try to do what's suggested but frequently don't manage. I try to move on when it's gone pear shaped but it is hard.

We're away for a week and I can't tell you how lovely it is. I've realised now she has a diagnosis bd care package in place I need to stand back and let the system work. If I keep stepping in then it will never be obvious when she needs more help so that is my Easter resolution. I was close to the edge recently and I'm not going back. The shock if diagnosis is wearing off a bit.

Enjoy your break Wynken you more than deserve it. Dad came over on Thursday, then for reasons best known to himself left before anyone else woke up on Friday, went to usual train station to go home, no trains running as was Easter Friday, got totally baffled and from what he told me the police had to get involved (not sure if that's because he had an explosion, or station staff saw he was really confused and needed help getting to the right train station).
A year ago I'd have been super stressing out about it, now I just think every time he comes to visit us under his own steam is a blessing. I had a great breakfast lined up for him on Friday morning, but oh well.

Thank you Whataboutbob. Think you're totally right about how good it is he can get to you.

I have some good news for a change. Back to Memory Clinic today and her Aricept dose being increased to 10mg. The Consultant said when she started that she wouldn't see any difference on a day to day basis. However we saw the nurse today. She asked if Mum had noticed a difference and I think there has been one.

Called her when back on Saturday and said I'd see her today. I didn't ring in between and she had changed and was all ready when I came. Before she woukd have needed reminding. She knew consistently what the day was today and referred several times to her Carer visit yesterday, knowing it's Sunday. She also remembered I had her out of date £20 notes to change whereas she couldn't recognise the difference between sterling and Euros a couple of week's ago.

I'm under no illusions, I know it won't work for long and she might have a TIA again as has mixed dementia. She couldn't recognise DH and DS in a photo today. But overall she is sharper and I feel I can back off a bit for now and am starting work again next week. I've also told her the Doctor told me to do less not more when she was asking me to do more shopping for her (exaggeration but he did say to try and relax !) and suggested. She ups her cleaner's hours for things like that as she's said she will happily take Mum. I feel my life is starting to go back to a new normal and we've been given a temporary respite to try and recharge a bit.

Marking my place, my father has vascular dementia, mother desperately trying to do her best for him. So hard for all of us.
Contented Dementia book has helped me a lot. The Liz Ayers thing made a lot of sense too. It's a horrid disease :-(

Hi Yogabird. Sorry you're going through it too. I'm halfway through the Contented Dementia book , must finish it at some point.

Wynken that sounds really positive. The aricept did seem to make a difference for Dad too. Good she's getting carers in and seems to accept them. I'm probably looking at that stage of things soon. Had a phone call from the social worker who had visited, and charmingly described my Dad and brother as "filthy". The psychogeriatrician is visiting in a couple of days and I will need to talk about carers with her. I think Dad would benefit from regular visits, like many others children of persons with dementia I can't be there for the day to day stuff. I nearly don't have the energy to go through the whole process of setting things up again (not least convincing Dad it's a good idea) but feel I should try.

Hi Yoga. Hope you find support here. As Groucho Marx would have said, this isn't a club anyone wants to belong to. But I find it helps to communicate with others who are in the same situation. The Alzheimers Society talking point can be good too, but as someone said it can be depressing reading about parents who are that bit further down the line. Yes it's a f* horrid disease.