Uh, that would be board, not thread. Third glass of wine may have been too many. Thank you for the suggestion, freckafree.
Thanks so much for sharing your experience here!
Just a little update, Day 1 of Spanish class happened. I was more than a little :dubious: when this was first suggested, but the facility seemed really intent on utilizing whatever strengths/experience I had. I have to say it went REALLY well. Not everyone fully grasped what they were doing, but they loved the pretty colors (I made flashcards with bright-colored animals) and they loved repeating the words. Some of them were even making jokes! Most of them had spoken second languages in the past and one of them already spoke Spanish. I honestly don’t think I’ve had that much fun in a long time (I owe that in part to the co-facilitator, who is amazing with the dementia patients) and I think it’s going to be the best part of my day!
I will check back in a few days to read all the responses here… there is difficult territory and my hat’s off to anyone who has to deal with Alzheimer’s/dementia personally. I’ve only been with the rehab/nursing facility for a few days, but already I feel like as a caretaker I’m unfettered by the tragedy of who they were in the past… I never knew them then, I only know them now, so I can appreciate the immediacy of the moment no matter what is manifest. They don’t have to be anything other than who they are.
Wow olives, that sounds really cool. Im glad the rec staff, or whatever she calls herself there was cool. Um, I don’t want to talk down about any member of the interdisciplinary team but sometimes recreation staff a a bit deluded and in their own world about what patients can and cannot do. Like “lets all do crossword puzzles” which might be appropriate for one patient on the unit, instead of something more mundane but accessable like “lets throw a Nerf ball around the circle while we play polka music”
Beldame, please send me an email to the email in your profile. I can send you some files and info that would be too big to post here.
er I mean send to the email in my profile,
me_creatively at live.ca without spaces and stuff
I don’t envy you, but I do applaud your willingness to not to stick your head in the sand. Actually its quite common that the out of town family are the ones that say “hey this ain’t right” and get the ball rolling. Everyone else is too involved, and busy coping to notice or do anything about it. Or the change is gradual, bit by bit, like reading during the late afternoon as the light fades, eventually you are sitting in the dark, and can’t see a thing.
The only thing I can suggest is getting the siblings on board, maybe showing them some links which I will post later as I finish compiling my very exhaustive link library. (Until the last computer bit it I had a list of medical sites and links going back to the early days of the internet, back in the pre-Google days when search engines were kind of hit and miss) If you can get even one sibling or inlaw on board, local to the parents, then maybe the next time FIL is hospitalized someone can talk to his nurse about the concerns. Get discharge planning involved.
The motto if you fail to plan you plan to fail is never more true than in dealing with elderly relatives and especially one with dementia.
I am sorry about your aunt. I live with the fear I will end up in care with dementia, 3/4 of my grandparents either had it or had a sibling with it (My dad’s biological father was a casualty of WWII but most of his sisters had it.) I lost my most beloved Grandmother last September to this horrid disease, and although her dementia was never severe enough to require a special unit, she was in LTC and had lost a lot of what made her my Grandma by the end. It was her choice, and my Dad’s to go into care, but part of me has never felt right about it. So the best I could do for her was make sure she got lots of visits, excellent care, and I could feed the karmic wheel by giving the best care possible to my patients.
As for doing the hands on nursing, yeah it gets stressful and sometimes I don’t enjoy particular tasks. Sometimes I indulge in a bit of stress relief with co workers and we sound like terrible people when we get our frustrations out. But we vent and we go back to it. There are very few people I work with./have worked with that are cruel, mean spirited, or bad nurses. People find out quickly if they can do this work or not, and move on if they can’t.
I try to let my down time be down time and not talk/think about work too much when Im away from it. I have a pretty good personal support system including a mom who gets it, understands the nature of my job and the building I work in (when it was a Provincial Hospital she worked in the administration offices) and a boyfriend who dislikes all discussions of medical topics. I have interesting hobbies and of course the awesomest kid in the world who almost died several times in his first week of life, is a radiant kid who loves computers and Mythbusters, and keeps me grounded.
Oh, to add to my “empathize with caregivers” crediblity… when I was 31 and living with my then boyfriend, now ex husband, his dad became ill …strokes and physical imparment, and not cognitive decline, but we had to get him into care. Even in Canada there were a lot of hoops and problems, at first no doctor would take him, he hadn’t gone in years, then because he was crawling around the apartment we took him in with us. He hadn’t had a bath in a very long time, so I bathed him and got him cleaned up, but that was maybe to our detriment because in files he was listed as “being cared for by his daughter, a registered nurse” (I was not even daughter in law at that time!) and he was considered to be in stable, ok housing. But I had my boyfriend ditching me with his dad, we would come home to find him fallen to the floor in the bathroom falling when trying to get to the toilet. Six weeks of coming home to bathrooms covered in human waste, and the other brother calling and bitching at us, accusing us of faking things.
I started calling the local Health Authority daily to ask about emergency placement, and one day I told the worker, NO for the 2oth time, I am not his daughter, I am his son’s girlfriend and in no legal or moral obligation to stay in that situation. If something did not happen soon, I would leave and leave them stranded. I emphasized my boyfriend had a disability, and was not competent to do his fathers care. (I felt bad about making my boyfried sound like his disability was bad, but I needed something quickly, and it is true, he does have a physical disability, and probably could not do his dad’s bathing and care)
They found him an emergency bed in a transitional facility, and FIL was there for two months before going to a rehabilitation hospital, and eventually Long Term Care. But that fight is for another time.
I think I have posted more today than I have some years on the dope.
Elder abuse isn’t “beating up the old man.” Berating him continuously for things he can neither avoid nor correct is also elder abuse; in most First World countries, denying him proper medical care (which his wife is doing indirectly) is also abuse.
Link to fact sheets on elder abuse.
It would be hard to launch a case that it is abuse if the MIL takes him to medical appointments, etc. But again, these are good sites to read to recognize situations.
I know I’m going to be blabbering all over the place, because I’m going to try to explain how things are here. I’ll apologize to everyone for that now.
I’m the caregiver (and P.O.A.) for my grandma. She’s 93, and in end-stage dementia/Alzheimer’s. She hasn’t been able to walk, even with help, for about 2 months, she’s incontinent, cannot eat/drink on her own, and she’s really out-of-it most of the time. She also fell out of her bed (this happened before we got the hospital bed delivered) before Halloween, and most likely has a broken hip. There’s no need for surgery at this point. We’re just trying to keep her comfortable.
We have a Hospice nurse come out to the house a couple times a week, and she has been wonderful. An aide comes out three times a week to do the bathing, change sheets, etc. She’s only here an hour, at most, but she’s really a big help.
I have a question for you about stopping her water/fluid intake. The nurse told me that when she starts choking on it, then it is time to stop giving it to her. Well, she’s now choking on every second sip, or so. It’s like she hasn’t got the energy to cough properly. I’m sure she doesn’t, because it’s been over a week since she’s had any food. She keeps spitting food (I’ve been giving her only soft foods, as she’s lost the ability to chew) back at me when I try to feed her. So, I stopped. I offer it to her, but she keeps refusing.
I’m really having a difficult time withholding water from her, though. She doesn’t say much, and when she does try to talk, it makes no sense at all.
Except for the word ‘water’. So, that really is a hard thing for me to be able to do. I know that if she aspirates the fluid, it will go into her lungs, and she’ll most likely die of pneumonia.
How do I convince myself to take away her water? It’s really more of an issue for me, than it is for her. I think I’m putting myself into her situation too much, and it’s really getting to me, mentally. I can’t imagine the feeling of being so thirsty, having a dried out mouth, wanting to take a drink, but no one will give it to me!
I know she’s dying. The nurse told me that it’s just a matter of days at this point. So, I know it’s coming. Why am I feeling like this? I know it would be to her benefit if I would withhold her fluids, but for some reason, I’m just having a really difficult time with that fact.
Oh, and to top it off, my mother (my grandma’s daughter, and only child) is convinced that Hospice, and I, are doing our best to kill my grandma, because I give her Morphine and Ativan.
Yeeeah. That’s just the thing I need to hear. Talk about denial! I’ve got my hands full as it is without my mom starting this crap. She’s convinced that, with prayer, my grandma will be making a full recovery. I told her that there is NO ‘recovery’ from this disease. She refuses to believe me.
She told me yesterday that her mother is NOT going to die. Why? Because ‘she looks fiiiiiiine.’
Mom didn’t see the mottling that is taking place on my grandma’s feet, legs, and hands. She didn’t pay attention to the very shallow breathing. She doesn’t know how miserable my grandma really is.
I do. Because it’s ME that is her caregiver. Mom has been here three times in the last 6 months to visit her mother. Mom only lives one house away from us, by the way
Also, when the Priest came on Saturday to give my grandma her Last Rites, I asked my mom to come and be there with her, my daughter, and myself. I thought it would be nice to have four generations present, to send one generation off to her God. Mom refused, and told me that it just ‘hurt her too much to take part in something like that.’
I found out after it was over that my mom, and my worthless half-sister, hauled their asses to WalMart, instead of being here for my grandma’s Last Rites.
That pissed me right off.
I’m just having a difficult time with it, is all. My family is very supportive of what is going on (except for my mom, and my worthless half-sister).
98% of my family lives out-of-state, so they can only give me words of support, and it is greatly appreciated!
Our daughter helps me out so much, too. My husband was also helping, because he’s been laid-off since March, but he just went back to work on Saturday, and is away most of the time (He’s an OTR truck driver), so, I’m really missing him, and right now, it’s almost too much.
I’m hanging in there, because I know it’s going to be over soon.
I never want to wish death on anyone, but, my grandma’s death is going to be such a welcome release for her, and for me.
nonacetone, a priest who was a friend of my parents used to stress a lot that, at least in Spanish, it’s not properly called “the Last Rites,” but “the Sacrament of the Sick,” and that it is “for the health of body and soul.” He had an ongoing joke with the local doctor about some clients who’d gotten it a dozen times: everything the doctor did wouldn’t help, finally he’d say “call Father Mateo,” and then the patient would get the sprinkling and make a recovery.
He said that, in his experience, it was good for the caretakers as well as for the patients; that it often helped people let go. Sometimes it would lead to reconciliations on families that had been broken for petty stuff (and isn’t it always for petty stuff?).
I’m sorry your mother missed that. If there is a God and a Heaven, Father Mateo will be there to receive your Grandma with a hug and a joke.
Thank you, Nava. I figured I had it all wrong.
I can’t really say what it was that he did, but I did call him to come to give her the Last Rites (Or, Sacrament of the Sick). There was no ‘sprinkling’ involved. Father Joe just said an ‘Our Father’, a ‘Hail Mary’, and then anointed her forehead, and the top of her hands, with some cream that sort of smelled like Jergens. That was it.
It was not an unpleasant thing to endure on our part, and it was rather a relaxing, peaceful time for us. It still really pisses me off that my mother refused to be there for it.
nonacetone - IANAD, or a nurse, but I was thinking about your Grandma and her thirst - can you run an icecube along her lips, just enough to wet her mouth? That may provide some relief…?
Just a thought, forgive me if this is a bad suggestion.
La Beldame: The name of the book is *How to Care for Aging Parents *by Virginia Morris. There are a lot of resources listed there.
Poysyn, yes. That is a great suggestion.
We have the spongy-type swabs that I can soak in ice water, and then put them in her mouth, and on her lips. Still, I can’t get around the fact that she just wants to have a drink of water.
I guess I need to straighten myself out, grow a backbone, and deal with it, I think.
From when a friend of mine was working with dementia patients, I remember him talking about… I dunno, something you mixed in with liquids (including water) to thicken them up for patients who’d choke on the liquid itself. Maybe something like that?
I am at work, and hate posting from here… Hello IT department if you are that bored, read my posts… but just a few quick points.
nonacetone… if she is aspirating everything, clear water is probably the best thing to give, small sips or ice chips. Thick-it can be used to thicken up juice or milk to give fluids. but its pretty nasty to just thicken water. Jello is thickened water, and will quench thirst, also little tiny bits of ice chips. Mouth care regularly–like hourly while awake–really helps with the dry mouth.
I’m sorry about your Mother being … well whatever she is being.
More later, Im on my coffee break and just wanted to check in quickly, and I figured the fluids question can’t wait.
And morphine for the dying is NOT “KILLING THEM”. (Assuming you arent giving huge doses or anything.) How is her breathing?
One other thing, if she really is palliative, and if it is a matter of days, would you rather keep her alive a few more hours, or give her relief from thirst?
I’ve had patients who can swallow if the water is quite warm/hot or cold, as it gives more sensation on swallowing.
Thank you so much for responding, Mona Lisa Simpson.
Her breathing is shallow, but no real Cheyne-Stokes breathing. Yet. She’s really disoriented, restless, and wanting to ‘pick’ at things, which I hear is another sign of impending death.
FedEx just delivered more Morphine for her, too. Four bottles of it. She can have anywhere from 5 to 40mg every hour, if necessary. I plan on keeping her comfortable!
What little bit of water I give her, is always ice cold. I am going to make a batch of Jello for her now. Maybe she can get that down a bit easier.
Again, thank you!
By the way, Nonacetone and Le Beldame, I have been thinking a lot about both of you today. Im feeling really helpless being on the other end of an internet connection, I wish I could come and give you each a week of respite!
I am looking through the thread, I think I have touched on all the questions, but if any of you feel I have missed yours, please let me know.