Caring for others - tips and hints, support and strategies, or just plain offloading

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anniet
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Message 1818012 - Posted: 18 Sep 2016, 15:31:32 UTC
Last modified: 18 Sep 2016, 15:34:23 UTC

*direct pointy stick at far right of thread title*

I will be focusing on this bit today, people. I hope you don't mind... *breeze-on before someone can say they do* If I wasn't being selfish, I would be discussing my mum's poor nights, but I am so I won't. Instead,

here...

*wave pointy stick at here* I will be moaning about my mornings. Barring assault by inanimate objects in quick succession; stair descents combining exhilarating angles with thudding and roaring, I used to manage perfectly well with mornings by rescheduling everything so that waking up occurred a few hours after getting up. This is no longer working for me. Barring bits falling off loved ones, them shrinking in hanging baskets, anniet's clinging to the outside of buildings, or frozen mince during bomb-hurling events, my mornings are delivering better nightmares than anything my nights can dream up, and as I don't have any hints or tips for making them stop, I'm hoping someone else has.

However *beam round thread* other people's problems can distract a brain long enough for it to bob up out of the mire its overthinking churned up... and start crawling with fresh purpose to the next prime site for one *wistful blink* So do feel free to step over my plea and get straight into your own offloading if you prefer :) or indeed any other unrelated advice that might prove helpful to others when it comes to adjusting to a loved one's growing frailties. Okay? Okay! :)

Now. *begin busy period with pointy stick* I do recommend you lot over there eating... to leave the thread here, except over there... by the door :) but thank you for popping in.

For the past couple of months, my mornings involve discreetly attempting to search my mum's room (and remove things from it) without her knowing.

This is predominantly for a random assortment of somewhat ill-suited "containers" of wee and poo, people, that she's taken to ferreting away in drawers and cupboards and behind curtains etc, which she then forgets about... and is in addition to her bedside commode and her incontinence panties (both of which were much less of a steep learning curve for me than this is proving to be.) I shall call this niggling concern #1.

I'm trying to do it without her knowing because when I deal with it in front of her - it seems to flip a switch in her head and she gets really upset :( and as much as I love her, she's not very pleasant when she's upset :/

Sometimes she mistakes me as "staff" (And I know I'm not doing it to get her thrown out). Sometimes she remembers who I am but that is almost always worse whatever tack she takes. The one that hurts me the least is when she stitches some confused thoughts together, and firmly pins the blame on children climbing through the window and wants to "call the authorities" - until I point out that the window is perhaps twenty feet off the ground and doesn't open very wide - which means they only way in is wafting through the glass - which she accepts is glass only when she fails to waft her own hand through it - which is when she blames someone else instead.

Now I know her grandson. He's my son after all :) and I know his dad too. You kind of do after nearly thirty years together :) and I know if they find out what they're regularly being accused of - that they too might get really quite upset :// I'm going to call this my niggling concern #2. and finding a solution that means they need never know, would prove a lot less fraught all round I think :) because upset people take a lot more of my time when they're upset than when they happy, and my days are already lacking sufficient hours in them as it is. But she doesn't know them. She hasn't a clue who they are 90% of the time :(

Very, very occasionally - she has a recollection of "getting muddled about where she was" and then "feeling ashamed" :((

I don't want her to feel ashamed. I want her to feel comfortable and happy, and I'm vacillating between thinking: this is just an unfortunate part of how her Alzheimer's affects her as it progresses which we will all just have to learn to run with... and wondering if it's something rooted elsewhere. In her childhood(she did used to wet the bed, and was punished severely by her father for doing so... or it could even be a regression to what she must have done on the occasions she used to barricade herself in her bedroom when in a rage (and then not come out for days on end) when I was a child.

So it could be something as simple as being behind a closed door that's triggering flashbacks to earlier times in her life - but she refuses to sleep with it open - and bedtimes are enough of a tussle as it is :\

edit: Oh. I meant to click preview there because I was going to say something else, but looking at how long this is already, I'll leave it for the moment... :)
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Message 1818044 - Posted: 18 Sep 2016, 19:33:53 UTC

Annie, I cannot imagine how you cope as well as you do.

Now I am caring for my dad every day I find it totally different from what I expected. Whilst he is 92 he is still fairly "with it". It is mostly his mobility and eyesight that I am helping out with.

However his short term memory is not all it was. He has 7 pills in the morning and 2 at night, all sorted by me into a 14 compartment pills box.

It is really difficult to get him to remember the evening ones and if I ask if he has taken them I feel like you, I can't go and check because he would get upset.

He also cannot get the hang of recycling rubbish, I am an avid recycler and here we have have separate places to put things, now instead of pointing out that cans bottles and paper go in a different bin to the other rubbish, I just have to check now and then to see what he has thrown in the wrong place.

I think my most important function to him is to be able to come to the rescue when as he has trouble seeing the TV remote button he gets totally lost in the mass of channels now available, I can find the correct channel or more importantly navigate the menu to play old recorded episodes of Heartbeat. I think if I never hear that tune again it will be too soon!!

He is fiercely independent and really didn't want me coming here, luckily he has seen the benefit I can be.

The worst thing for me was finding out how badly he has lost control of his money, and to me seeing my father in that light really hurt, he is a proud man and cannot remember how it got so bad. Luckily I am hoping to restore control.

Still as he is 92 all I can do is try to make his twilight years as easy as possible.

Thinking of the strong independent man I knew and seeing him now brings tears to my eyes.

My one thought is he is my dad, I will do what I can.
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Message 1818056 - Posted: 18 Sep 2016, 20:48:30 UTC

Kudos to you both.

Unfortunately a serious illness can hit anyone one at any age. In my case, I noticed some odd things occurring between later Summer & throughout Autumn 2004.

Sadly for me, I did not recognise them even though I was a 1st aider & to make matters worse, I was working anywhere from 10 to 16 hours most days, & often tired when I got home. One does not notice things when one sees the same face day in day out, especially in a 34 year old vibrant woman.

One day in late October that year, I finished early enough to get home at a decent time & within minutes saw my partner rush up the narrow staircase in our home, freeze & start shaking.

Didn't like what I saw so discussed the issue with my boss the next day, who agreed that it was strange & booked me a day off to see her doctor. I attended the surgery with her & told the doctor what I was seeing which disturbed the doctor who immediately booked her in for a MRI scan on 2nd March 2005.

Unfortunately, 2 weeks before that scan, I came home & found her frozen to an armchair. Called the emergency services & on arrival they took her to hospital. Being in a state of undress, I told them that I will follow them.

In the time it took me to dress & get to the hospital, she had been transferred from A&E to Intensive Care.

To cut a long story short, what happened the next day scared the hell out of me. I've assisted many epileptics over the years, but never saw anything like that - she was fitting faster than a heavy machine firing.

While in Intensive Care, they found her suffering from 3 issues: -

Galactosempia
Osteoporosis
Epilepsy

The next 8 years were tough, with the following 2 making up for those 8 years, only for me to get hit hard - Now I'm the one being cared for :-)

My motto has always been - You're born, then you die. It's what you do between those 2 events that defines a person. Having a spark of humanity & a heart can be very emotive.
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Message 1818068 - Posted: 18 Sep 2016, 23:09:02 UTC

Sometimes she mistakes me as "staff"

I can identify with that very well. My mother is always asking when “they” are going to bring lunch, and holds out her empty plate when she's done. I asked her what she was doing, and she said nonchalantly, “oh they come by and get it.”

regression

My mother does that too. She seems to be in a time warp, and often says she wants to “go home”, referring to a house she hasn't lived in for over 50 years, and she almost everyday tells me she needs to call home to tell her parents she'll be late getting home. Both her parents have been dead many years, and when reminded of this, she snaps out of it, and says, “oh, I know”.


Our situations, while unique in their own ways, seem to share a very important theme: We will do whatever we can to help the people we love.

From the after-effects of a fall in her home in March of 2014, my mother can't walk, and never will again, plus she has some sort of dementia-like brain illness that I think started a few years ago, but accelerated quite a bit during her hospital stay trying to recover from pneumonia in the hospital. The pneumonia was brought on from weakness and bed rest in the hospital for the back injury(a sacral fracture), and she ended up nearly comatose, on life support for three weeks, and intubated(trach and feeding) for most of the next four months.

I really don't know what my mother's condition is called because in spite of many different types of brain scans while she was incarcerated in the hospital for 4 months, no one ever sat down with me and said, Gordon, your mother has x or y. The main thing is, I got her back in her home. I tried to juggle a 3rd shift job, but decided it was too dangerous for her to be alone at night or really for any extended period of time, plus too unhealthy for my sanity to attempt it, so I quit my job and became her full-time care-giver.

What works best for us is routine. Routine, routine, routine. With my mother's dementia-like symptoms, daily routine helps reinforce short-term memory tasks. I don't think she'll ever accept the daily bath, however, as she always acts amazed when I tell it's time, and then protests about me taking her clothes off, etc. It has to be done, and she does agree with my logic for the efficacy of a daily bath, but she just doesn't like it. I don't blame her. I don't like giving it, but luckily she's small enough I can pick her up, put her in a bathtub chair and make the process as easy as possible for both of us.

Caring for an aging parent with disabilities is hard, there's no doubt about it, but I would die first if she was in a nursing home. I cannot under any circumstances live with her in a nursing home; that would kill me first. She is in the house she and my daddy bought in 1967, where I was raised, and it's vitally important for her mental health to stay in it. My dad died in 1982, and then I moved out after I graduated from U of L, in 1990, so she's been an independent widow for quite a long time.

In the grand scheme of things, she's physically healthy, mainly just taking vitamins and some anti-anxiety medicine. She can't walk, but that's essentially from muscular weakness due to the long hospital recuperation. We tried physical therapy, but she hated it, and is not upset about her lack of mobility, even though it's ironic, considering she used to walk around the city reservoir several times a day, everyday, and was so independent. She knows I'm taking care of things, and doesn't complain except at bath time, so it's ok. I actually laugh more nowadays than I have in years simply because I appreciate her dry sense of humor more than ever, plus coupled with the dementia, I'm not sure whether she's kidding or truly confused.

I keep a diary of her witty remarks, and also take a lot of pictures when we go out, and even some video and audio of ourselves interacting because I want to have it all for myself after she dies. She often wakes up, calling out for help, and saying she wants to go home, calling out for her mother(died in 1964), and me, and thinking she's in her car, and “can't make the turn”(out her bedroom doorway). When I go in her room, she's clutching her purse in her left arm, and holding her car keys in her right hand, and she's asking me why the car won't start or the steering wheel won't turn.

The other day she was holding a hand to her ear, and I asked her what she was doing and she said she was talking to Gordon. I said, “let me talk to him”. ;~)
The mind is a weird and mysterious place
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Message 1818069 - Posted: 18 Sep 2016, 23:28:43 UTC
Last modified: 19 Sep 2016, 5:18:16 UTC

You're born, then you die. It's what you do between those 2 events that defines a person.

Beautifully put. Annie, Bernie, Pat and Gordon, your loved ones are lucky to be in such good hands.
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Message 1818284 - Posted: 19 Sep 2016, 21:10:14 UTC
Last modified: 19 Sep 2016, 21:11:13 UTC

Oh my...Thank you so much everyone for your very moving posts. I have only just had the time to read them, and I would like to do them justice in my response. To do that properly will take a little time :)
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Message 1818467 - Posted: 20 Sep 2016, 14:53:53 UTC

Annie, for the immediate problem, it might be helpful to look at approaches used by animal behaviourists. I'll send you some links after chatting with a colleague who has experience in the field.

Beautifully put. Annie, Bernie, Pat and Gordon, your loved ones are lucky to be in such good hands.

+1
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Message 1818484 - Posted: 20 Sep 2016, 21:23:03 UTC - in response to Message 1818467.  

Annie, for the immediate problem, it might be helpful to look at approaches used by animal behaviourists. I'll send you some links after chatting with a colleague who has experience in the field.

Beautifully put. Annie, Bernie, Pat and Gordon, your loved ones are lucky to be in such good hands.

+1

Yes, its critical you pet them on the head when they are good.
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Message 1818559 - Posted: 21 Sep 2016, 3:58:44 UTC - in response to Message 1818484.  

I should have worded my earlier post better. Sorry :-(
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Message 1818620 - Posted: 21 Sep 2016, 11:13:09 UTC

I am going through a similar situation with my father, except he is in the hospital 1500 miles away from me. He understands next to nothing, and conversations are extremely difficult. It is easy to feel helpless, as there is little that can be done. My fathers specific problem is degenerative Parkinson's. He doesn't shake, but aspirated food, and things went south from there. Last night he told me to read a medical book, and tell the doctors what to do to get him out. He is extremely belligerent, not understanding why he can't go home, even though he doesn't remember his home, after just being in the hospital a week.

I sympathize with everyone dealing with aging parents or loved ones. Nothing about any of this is easy, and I'm 1500 miles away.

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Message 1818658 - Posted: 21 Sep 2016, 16:49:49 UTC
Last modified: 21 Sep 2016, 17:09:40 UTC

My first attempt to respond, yesterday, got lost in an outrage. I shall now try again. I think it will need to be split into more than one post though... but let's see how it goes shall we? :)

@Bernie
Annie, I cannot imagine how you cope as well as you do.

Well blinking is important :) Then an "oh" followed by an "um..."

They buy time and keep my tongue out of mischief whilst my brain attempts to bludgeon a path to wherever the funny side of an issue is, to which I try to respond in keeping. And I can still make her laugh - a lot, which is nice :) particularly so when nothing in her demeanour indicated she would. If that fails, making some excuse to leave the room, and then re-entering it a minute later all cheerful and full of smiles, like it's the first time I've laid eyes on her all day, can be very convincing in making her think that too :) I try not to deploy that tactic too often though because I expect it only reinforces her confusion as to who I am, but if I'm lucky, she settles on thinking I'm a fellow "inmate" and it's amazing what I get to hear when working undercover ;) It 's by far the quickest way of finding out what she's not happy about without the stress of being informed of it in a direct but extremely muddled confrontation.

And her anti-psychotics have made things easier than they would be otherwise. I have guilt-pangs about them at times, because I know they have some unpleasant side effects, but when taking her out and about with me, they make for much less fraught encounters with people she suddenly takes a dislike to... which means I can usually subtly usher her onwards without having to bask too often in the reflected limelight of her target's reciprocated abuse.

With regards territory issues... Because she has come to live with us in our home, as opposed to the other way round, it does make it easier to justify infringements. Well... to myself anyway :) I'd find it a lot harder otherwise I think. That doesn't mean she feels the same way :/ particularly when she's convinced she's living in her house, and the place is crawling with strangers helping themselves to "her food" etc . A tricky aspect to that is the resulting "light fingeredness" that follows. It's really sweet in some ways, because she likes pretty things, and cute pictures especially, and tends to gather them up her sleeves and in her hands or handbag so as to stash them amongst her belongings when she rediscovers them, which would be okay if she wasn't stashing noxious materials along with them. The hardest instance of that for me was a cherished photograph we had of our dog, our guinea pig, our children and cats all snuggled up together, that was taken shortly before our dog died :( I don't how long it had been soaking, but it wasn't salvageable and I'm ashamed to say I came close to losing it with her that morning :/ It's been the only time though, but it spurred me into getting her into respite care for a little over a week, and gave me a chance to switch the bedrooms around so that she could have the one closest to the bathroom because I thought it might help (although it is smaller); redecorated it in her favourite colours, and put as many personally precious things in the rest of the house, out of her reach, whilst scattering pretty stuff with little sentiment attached to them, in easy to "steal from" places in time for her return :)

I feel for you with your recycling issues, Bernie. My mum has never liked throwing anything away, so stopping her going through the bin and taking stuff back out of it is where we get our rubbish jollies from ;) A HUGE issue for me though (and it's been one I've always had with her) is that she kills every insect that has had the frightful misfortune to waddle into her view :( *cast dark glance round planet* I don't even allow my cats to do that. So I no longer say hello to them when they totter past me (insects, not cats) - just rudely interfere with their current plans in order to whisk them out of her sight.

I think if I never hear that tune again it will be too soon!!

:)))

I'm sorry... let me try that again.... I feel for you. It's a crime when good music turns bad in your ears through no intrinsic fault of its own :) y-e-e-s... Well best of luck with that! :) Perhaps you could distract yourself with the knowledge that at the moment, we're on day six of her being glued to the QVC beauty channel I think it's called (and didn't know existed) which four days ago had me fantasising about jabbing mascara wands in the presenters' eyes. It made me... contented somehow

:)

The worst thing for me was finding out how badly he has lost control of his money, and to me seeing my father in that light really hurt, he is a proud man and cannot remember how it got so bad. Luckily I am hoping to restore control.

That is tough :( For my mum it was giving her bank details to phone scammers and things like asking complete strangers to help her use cashpoints, then letting them "help her home with her shopping" where they'd stop for a "quick cuppa" and steal from her whilst she was making it. Moving her in with me, proved to be the only way to put a stop to it.

@Sirius
Unfortunately a serious illness can hit anyone one at any age. In my case, I noticed some odd things occurring between later Summer & throughout Autumn 2004.
One does not notice things when one sees the same face day in day out,

Unless they can articulate it sufficiently well enough for us to get a heads-up - it takes time to doesn't it? :( I find it very hard assessing my mum's general state of health. She never says she's "fine" whether she is or not and then we're treading the line of either wasting a doctor's time or not getting their help earlier. It sounds like you suffered a long haul, Sirius :( Not everyone stays the distance. When you do - it is that much harder when it's over.

Now I'm the one being cared for :-)

I'm glad to hear you are :)

@Gordon
Our situations, while unique in their own ways, seem to share a very important theme: We will do whatever we can to help the people we love.

That is so true :) I worry I'm spread too thinly though - and I know my mum resents sharing me with others. That gets further complicated by her not remembering who they are and why they're important to me (and were once to her too). It would be simpler if she didn't firstly: mistake two men as being "hundreds of strange ones" coming in an out of the bedrooms upstairs every day, and secondly: if she wasn't putting two and 100 together and concluding... *drape eyelids across monitor* that I've gone on the game. It's become a bit of a joke amongst friends now, when we meet up, because I made it so :) but the half of my genes she doesn't have to take responsibility for, she utterly loathes :( so it isn't as funny as people think :/ and I only have myself to blame for wanting to cry while they're all chuckling. Not to worry! :) It's just ironic that sometimes when she knows who I am, she doesn't know me at all.

I really don't know what my mother's condition is called because in spite of many different types of brain scans while she was incarcerated in the hospital for 4 months, no one ever sat down with me and said, Gordon, your mother has x or y.

It maybe isn't important because she does have you and you are giving her better care whatever it is she has, than anything she will get elsewhere. In my mum's case there was a lot of prevaricating by the medical profession before they finally diagnosed Alzheimers. They're now throwing around phrases about co-morbidity (with vascular dementia) . Whether that's new, or was always the case, I don't know.

I don't think she'll ever accept the daily bath, however, as she always acts amazed when I tell it's time, and then protests about me taking her clothes off, etc.

Oh do not get me started on bathtimes!!!

I actually laugh more nowadays than I have in years simply because I appreciate her dry sense of humor more than ever, plus coupled with the dementia, I'm not sure whether she's kidding or truly confused.

We spend a lot of time laughing too :) Fortunately, she likes the way I express myself and I am able to deflect her monster within a lot of the time :)

[open evil anniet] Sometimes I fleetingly envisage how much easier it would be to keep her safe if she was less physically able though[/evil anniet] :/ I've caught her letting herself out of the house to go and "meet Annie in London". She also has a frustrating tendency when we're out shopping and going through the tills where one minute I think she's with me only to find her behind seven or eight other people and wedged in down an aisle some distance away, because she's allowed them to get in front of her because she's "not in the queue" which is fine if she doesn't lose sight of me, but when she does and she's in sight of the door, means I'm liable to find her walker (predominantly for the purposes of avoiding falls) parked in the trolley park and her setting off without it to goodness knows where...

I keep a diary of her witty remarks,

That's such a good idea! :) Many of my mum's are etched into my brain though :) like when she enquires whether I have enough LSD to pay for something and starts rummaging in her handbag for her purse. In the startled hush that ensues in our vicinity I generally respond with "No not really, but it's fine. You keep it. They prefer money anyway."

The other day she was holding a hand to her ear, and I asked her what she was doing and she said she was talking to Gordon. I said, “let me talk to him”. ;~)

:)) So. Did you talk to yourself for long...? ;)

@SciManStev
I sympathize with everyone dealing with aging parents or loved ones. Nothing about any of this is easy, and I'm 1500 miles away.

I'm sorry you're going through that :( Distance heaps all other sorts of difficulties on our shoulders, and helplessness is a huge part of that. I found 53 miles daunting enough when it came to trying to appease my mum from afar, but I could make promises that weren't too difficult to keep if I absolutely had to. I doubt you have that luxury :/ I do hope things improve for you, and for him.

@DLL, HBH: Very very interesting! Thank you! I will be back :)
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Message 1818771 - Posted: 22 Sep 2016, 0:03:49 UTC

Steve, the first month my mother was hospitalized, she aspirated and that led to pneumonia, and intubation, and then when she regained some strength she started pulling her tubes out(I don't blame her; I probably would have done the same thing). One morning when I got out of the elevator, I heard sirens and saw lights blinking up and down the hospital hall, and a whole lot of activity in my mother's room. I thought she'd died or something, but she was just confused and irritated with all the paraphernalia attached to her. She fell out of bed so many times, they eventually had to station a nurse 24/7 next to her because she kept trying to get up and get the heck out of there. Sure, there are bed alarms, but they only work after you've already fallen.

The hospital ordeal was a nightmare for me, but she doesn't remember it, and that's fine. I've blocked a lot of it out, myself.

Having a trach tube in her throat for 4 months so they could suction out her lungs every hour was hard to watch and uncomfortable for her, but her inability to talk was even harder. Communication was mainly lip reading because her hands shook so much I couldn't read what she wrote. She doesn't have Parkinson's. It's something called Essential Tremor, which she's had all her life, but she managed to learn piano and do recitals in school. ~That's another amazing thing about the brain and the body. It's like the part of the brain that responds to music says to the rest of the brain, "shut up, I'm concentrating here".

I ordered the old tv series, Bewitched, the other day, and it just came in the mail. I let my mother open the box, and then a few minutes after she set it down, she started singing, "Bewitched, Bothered, and Bewildered". I really wasn't familiar with the song, but apparently she was... One of the things I've discovered about my mother is she has a very nice singing voice and can carry a tune - I did not inherit that talent.

Looking at old photo albums together is something else very special that I would not have done if I wasn't caring for her now. Those photo albums would have stayed in the cedar chest until after she died, and then I would have cried about not having shared old picture memories with her.

One tip for support and coping strategies is find a way to relax. For some people that means bringing others into the equation for respite, but for my situation, I need the independence of doing it on my own. ~I know that sounds like a contradiction, but I don't want to depend on anyone. With the exception of bath time, I am most relaxed just taking care of my mother all by myself.

Annie, yes, my mother calls me a lot. She says my phone number out loud(as if mentally dialing it?). I do wonder about these "other Gordons" she talks about. Ever seen the movie, Multiplicity?
The mind is a weird and mysterious place
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Message 1818779 - Posted: 22 Sep 2016, 1:09:16 UTC - in response to Message 1818771.  

her hands shook so much I couldn't read what she wrote. She doesn't have Parkinson's. It's something called Essential Tremor, which she's had all her life, but she managed to learn piano and do recitals in school. ~That's another amazing thing about the brain and the body. It's like the part of the brain that responds to music says to the rest of the brain, "shut up, I'm concentrating here".


One other thing that quelled her tremors was watercolor painting, which of course requires a steady hand. She made some beautiful pictures and they are all on the walls in her home.
The mind is a weird and mysterious place
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Message 1818790 - Posted: 22 Sep 2016, 1:57:21 UTC

Ageing parents, hmm, Mom died at 76, cancer, Dad at 73, self inflicted lead poisoning.

No I'm 56, I'm 3 years older than My older Sister was when She passed away, My Brother was 61, My Grandpa lived until He was 82, He was as healthy as a horse...

I cared for My Mom, for longer than most, She didn't have the income to live on Her own, at best I kept Her from becoming homeless, up until She retired, She smoked a lot and drank a little, afterwards, She drank more and more, inside was some hate(My Brother brought home a gift of plates from Japan, as soon as Mom found out that the microwave oven was pitting and chipping those dishes, She wanted Me to use the microwave to keep on damaging them, the chopsticks She hated, turns out She wished everyone and everything was molten slag, She wanted every Japanese City nuked, I kid you not).

My Brother and I lived together from 1998 up until early 2004, when We found out that He had lung cancer in addition to the emphysema, We think He'd been hiding the cancer since 2000, He got an O2 tank then, and was going to see an oncologist, He swore Me to secrecy on that, after He died I was no longer bound by My promise, and I told everyone what I knew, I'd stayed out in the car, since the place My Brother went to was the same place My Mom went to, I did not want to repeat that, I did get Him to quit smoking, although I think He did too, He wanted to buy a 5th wheel trailer and with His GMC pickup have Him and Me travel around the country visiting the national parks, sadly that never happened, the house He lived in was supposed to have My name on it with His, but time and His family killed that idea, I'd given up My house to get Him His last house. The cancer went from His lungs to His brain, He lasted until May 2005, He was taken care of by His ex and Her/His 3 grown children 24/7, in Her living room in a hospital bed, a Nurse came by once a week until He died, I could not be there at the end, since I only had enough income then for 1 visit per month.

I am essentially the last Mohican. :(
H.R. 1469 Cuts SSI, EITC, ACA, Medicaid, SNAP, LiHeap, Heap, etc, etc, etc, all temporary, w/a 5yr lifetime limit like TANF! Can't work? Die!!
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Profile Gordon Lowe
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Message 1818799 - Posted: 22 Sep 2016, 2:32:08 UTC - in response to Message 1818790.  
Last modified: 22 Sep 2016, 2:32:46 UTC

I am essentially the last Mohican


Same here, but I'm not sad about that. I never felt any pressure to get married and have kids.

My mother retired in 1965, when she got married, and never went back to work, and was lucky enough that when my father died in 1982 she had enough money to put me through high school and U of L, and now that she's sick I am also lucky to be able to quit my job and take care of her.

I think we're all going to be ok. ~That's my mantra. It's the best way to look at it.
The mind is a weird and mysterious place
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Message 1819180 - Posted: 23 Sep 2016, 16:56:10 UTC

As difficult as it is to watch loved ones fade, and as difficult as it is to provide and/or manage their care, in the long run, you will never regret the time you spent with aging relatives.
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Message 1819232 - Posted: 23 Sep 2016, 21:15:47 UTC
Last modified: 23 Sep 2016, 21:35:29 UTC

@aspiration:

:(

I am really worried my mum is at risk of doing just that. She has entirely lost her sense of smell, and that's causing issues with food. Whether it's as a consequence, or not, she has developed what I can only describe as an insanely sweet tooth :/and those goalposts seem to move daily. If she would just add extra sugar to something everyone else concurs is already very sweet (say for example honey mangoes) or allow me to do so for her, that would be one thing, but she doesn't, because she insists she does not "take sugar" and she certainly never used to. But she makes gagging and choking noises on each and every "bitter bitter disgusting" mouthful... but make any attempt to intervene in order to give her something else instead, and she starts cramming the offending food into her mouth in fistfuls, which does make her choke. At least with savoury food, the worst she does is throw it, with plate still attached, on the floor - although that seems to be less frequent since we switched to plastic ones :) But there are never issues with chocolate and biscuits. She'd graze on those all day and night if she could.

Sometimes I wonder if I'm seeing the two year old she once was (which is :) but also a bit :/

@Vic: I'm sorry you lost your family, and all at such young ages. That is rough :(( My mum is 89 now, and there are no physical ills that threaten her at present. I still have one brother (12 years older than myself) but he cut my mother out of his life about 7 years ago and will not relent on that. She would be left to rot in a gutter if he had his way :/ With my sister again living abroad, and seemingly mostly concerned about whether I'm "caring for her soul so she doesn't go to hell when she dies" @;@ (which I can't say I'm doing with any honesty) there is no one other than myself who is prepared to do what she needs for her now while she's still alive - which is the important bit, I think anyway :)

you will never regret the time you spent with aging relatives

That is so true, Angela - although sometimes, at the time you're spending the time, it may not feel like that :/ For the ten days my mum was in respite care though, despite how it improved my mornings at the time :) I did miss her terribly.

Now :) HBH. Your suggestion pressed all my right buttons, so please don't worry :) My mind works on the belief that even the worst behaviours are a form of communication, and that trying to understand the message is the first step to resolving a problem properly. So the first thing that popped into my head when this all started, was that I was looking at what one of my girl pussy cats might do when she has a UTI. Our GP also thought it possible - so treated my mum for that - despite the test not being conclusive, and only possibly, at best, borderline.

It didn't solve the issue unfortunately - but one of the over-riding messages I've picked up from the links you sent me is that I will most likely get nowhere fast solving this without some form of recognition from her that this is a problem that involves her - however I achieve it. Taking your words, Gordon, about routine routine routine, means perhaps a work around can be found.

So I have a plan - starting Monday - because they're good for starting daunting things : ) and if I get a chance to run it by people here beforehand, I will do so, but first, I took this:

its critical you pet them on the head when they are good

to heart. No I'm not patting her on the head, DLL :) but I am giving her the sort of positive reinforcements and praise that work so well when toilet training little ones. I don't know why it didn't occur to me earlier though :/

Ever seen the movie, Multiplicity?

Yes :) I think it was you that recommended it to me :)
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Message 1819239 - Posted: 23 Sep 2016, 22:06:02 UTC
Last modified: 23 Sep 2016, 22:06:51 UTC

Reduced sense of smell should not greatly impact the ability to swallow. Generally it is neurological impairment (i.e. from a stroke, a head injury, progressive neurological disease, dementia etc) that impacts swallowing.

Ask your mother's doctor to refer her for a swallowing evaluation, both bedside and video-fluroscopic. In California these are generally done by speech pathologists. In other states or in other countries, these might be done by occupational therapists or possibly even physical therapists. Licensing laws are different in different places.

Anyway, if you think you mom is at risk for aspiration/aspiration pneumonia, a swallowing evaluation should let you know that and also provide you with guidelines for a modified diet or physical adaptations/maneuvers that may help reduce her risk.
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Message 1819253 - Posted: 23 Sep 2016, 23:25:26 UTC - in response to Message 1819232.  

never issues with chocolate


Your mother sounds like a woman after my own mother's heart. They would get along just fine together as long as copious amounts of chocolate are in abundance. My mother says just about anything that isn't chocolate is "too salty".

She also forgets to chew sometimes, and crams whatever food is in front of her into her mouth. She's not always like that, but mainly when she's tired and hungry. I can relate, can't you? ;~)
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Message 1820162 - Posted: 27 Sep 2016, 11:36:18 UTC

I can say that dealing with the demise of a loved one is extremely draining. My7 father may have ALS, or the degenerative Parkinson's, as the doctors still aren't certain. They have checked for tumors, and just about everything. His kidneys are failing, and his mental capacity is failing extremely rapidly. His ability to get out of bed has long passed. He may go into home hospice any day, or aspirate more food at any moment. He is home from the hospital at the moment, but there is a lot of uncertainty. My best guess is days to weeks. Certainly not months.

I really do sympathize will everyone going through a similar situation. It is difficult, draining, and stressful. As I mentioned, I am 1500 miles away, with no possible means to do anything. For those of you dealing with the situation directly, my thoughts are with you.

Steve
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