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Carer/Caregiver Respite Tent
27 Oct 2013, 02:09
Quite a few of us are carers (Brit) or caregivers (US) for family members. I think that @Julieathome and @Karenm have particularly challenging jobs, and I'm sure there are others working equally hard.

So it seemed there might be a use for a respite room for us to share tears and laughs.

I'm a long distance caregiver for my mom, and I'm going out to see her next weekend with my brother (only sibling). My mom has Alzheimer's. She lives in a retirement community, and so far has an independent apartment, but with aides coming in to help, and lots of friends for support. She still knows who everyone is, but her short term memory is gone, and her long term memory isn't much better (I thought that wasn't supposed to go). Hard to get excited about going out there - it's stressful.

Please come in if you'd like to vent - I'd like to listen.
I'm an "as needed" caregiver to my Mom and anyone else in the family/friends that require extra assistance. Thankfully my Mom still has her wits about her and her very sharp sense of humor. :grin: It's hereditary in my family, lol. Strangers beware, no one is safe from a good razz :razz: lol.
Wendyjane, I understand your stress. :heart: It's very difficult to see loved ones and especially your parent change as the disease progresses. My first job was in a nursing home, I loved it! I worked swing shift and had alot of time to spend with my patients, chatting, doing silly things to make them laugh. I enjoyed them all regardless of how their minds had changed, it made their families feel a little bit better knowing I was taking special care of their loved one. Hopefully your Mom has people looking after her that care as much as I did way back then. :)
I have great respect for you, Betsy, and for anyone who loves working in a nursing home. Yes, there are a group of people - the Caring Committee - that give her rides to church. She plays Trivial Pursuit with a group of neighbors who all seem to be "all there" and enjoy having my mom with them - she sometimes knows answers that no one else does.

I call almost daily, and repeat the same news, and leave out the stuff that really matters - worry over one of the kids, the news of the Great Flood, concerns about husband's employment. They feel like duty calls for the most part, and that is depressing.
Great idea. Thank you.. My father in law is in his 80's, fiercely independent, lives in a retirement community, sharp (does the UK Daily Telegraph crossword every day), but we are about to have that "should you be driving" discussion. He can barely walk around the flat, his feet are swollen and has bad arthritis. To take his freedom away (he only really goes to Waitrose), will devastate him. Has anyone else had to have this convo?
@rawkaren had this conversation with my Dad seven or so years ago. He had been driving since the age of 12 (yes really - it was the war, and his family owned a haulage contractors so everyone was into driving- and lorries too.) He had what we thought at the time was Parkinson's but which has turned out to be Multiple Systems Atrophy. At the time we felt he was becoming unsafe (he'd frightened my nephew with a dangerous manoevre one day) so as he listened to me, I was deputised to speak to him. I actually went on his last drive - to get his beloved Citroen washed before it was sold ... Very sad. But better to have done, as you read about so many fatal accidents caused by older people who shouldn't be on the road.

My Dad is now far advanced with MSA, bedridden for the most part at home, and looked after full-time by my Mum (with care assistants visiting 4 times a day) - and she will be 80 next month. But as a former nurse, she wants to look after him. She has got the DNs (District Nurses) exactly where she wants them, and even our GP trusts her assessments of my Dad's condition now. We'd like to avoid his being in hospital because of the bad experiences we've had of his care there - the day-to-day stuff is appalling and all you hear about in the news is accurate I would say from our experience, although there is of course some exceptions.

I live 125 miles away - but try to give support where I can - so sympathise with your situation @wendyjane -it is stressful and very wearing at times. But my sister and I have just organised an 80th party for my Mum at a local hotel next month - about 25 people including some of the carers as well, so we're all looking forward to that especailly my Mum. It's just a shame that my Dad is really now too unaware and also not well enough to join in.
I'd like to be on this thread, although my lovely mother died 3 years ago I was very involved in her day to day care so I understand the frustrations and humour that accompanies such responsibilities.

@Silverdarling reading about your dad reminded of Bob Monkhouse once saying, " I want go like my died who died in his sleep, unlike his passengers!" :lol: :grin: :grin:

My thoughts and best wishes are with everyone who is a carer, whatever your circumstances and whomever you are caring for, not an easy , but massively underestimated job.

Ballerina x :heart:
I'm a full time carer to my 12 year old daughter (which in itself is amazing as they told us she'd probably not reach 2!)
It is hard work and her epilepsy is a pain. We now have a date of 18 November for her VNS surgery to try to control her seizures. But even though I spend most of my life tired, every day she makes me smile! She asks for kisses and cuddles and sings songs she hears on the radio (although she has little understanding of what she's singing)
I love her to bits! :heart: :heart: :heart:
Very touching to read the stories and brings back memories of when my own parents needed support..which was given willingly but very stressful in so many a great idea wendy to start the forum for folk to vent,share etc etc x
I'm not quite there yet. My parents are both in their mid 80s and managing alright. I dread the car talk with my father who is a very stubborn and fiercely independent person. Any reasoning with him in the past when he was ill did not go well. He still drives to Queensland on holidays a couple of times a year which is a very long way for someone his age.

I think this thread is a great idea. I have the utmost admiration for carers. I'm sure it has it's great rewards but is also physically and emotionally exhausting. X
Thank you @silverdarling Thankfully he does listen to OH (the only one of the siblings he takes note of), so maybe he will be given the task. He wants a stairlift as he is in a first floor flat, which we will end up funding. So it might have to be "if you need a stairlift you should not really be driving". But like most men of his age, I imagine he will be stubborn about it. He even had the stairwell banister secretly modified to make sure the stairlift meets building regs! Still cunning at his age. :lol: :lol:

@candicemarie. I also find this thread deeply touching.
rawkaren wrote: Great idea. Thank you.. My father in law is in his 80's, fiercely independent, lives in a retirement community, sharp (does the UK Daily Telegraph crossword every day), but we are about to have that "should you be driving" discussion. He can barely walk around the flat, his feet are swollen and has bad arthritis. To take his freedom away (he only really goes to Waitrose), will devastate him. Has anyone else had to have this convo?

We wrestled (figuratively!) the car away from my mom about 3 years back. She had a couple of times called her friend and helper in tears, because she forgot where she was going on the road. So we knew there was no choice.

We took the tack that
a) she would save money. Cars are so expensive. For what she was paying in gas, upkeep, registration, she could take a cab whenever she wanted to go out.
b) she lives in a "continuing care community". There are vans that regularly go to malls, doctor's offices, etc, that she could take for free.
and c) she has so many friends that take her places.

The car was sold, and unfortunately we went through a few months of her calling complaining that "I don't know why I let you kids talk me into selling my car. I feel really stranded without it. And I was still a good driver, not like some people here..."
Meanwhile the last time I saw the car before we sold it, there was a big dent in the side panel and she didn't know how it got there.

Well, she finally got around to feeling she's better off not dealing with a car, but it did take a while, and it wasn't easy.

@rawkaren, are there other ways he could get to Waitrose? That might be the first thing to investigate. See if you can create options for him.

Fortunately, I'm never going to be in this position, because I've decided not to get old. :lol: :lol: :lol:
@WendyjaneI am with you all the way on this one,

Ballerina x :heart:
Ballerina wrote: @WendyjaneI am with you all the way on this one,

Ballerina x :heart:

Yes and hopefully we've made a good start by doing 5:2 :victory: fingers crossed :clover: :clover: :clover:
One of the most appealing things I learned about fasting when I first read the MM article back in March was the possibility that it lessens the chances of getting dementia.
And be sure to post how the 80th birthday party goes, @Silverdarling!
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