Caregiving Thread: Sources, Answers and Support
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< For the next few school days you might want to find something else to do away from home to keep from sitting there in the quiet house focusing on the fact that you can't call her any more. Those moments are terrible, when you get ambushed by that feeling of, "Oh, I need to call Mom." or, "Oh, I have to tell Mom that, she would laugh..." Staying busy is probably the best antidote. Use distraction as much as you can.
I'm glad the kids are doing well. That has to be a big thing.
MIL and I would do coffee together several times a week, and I really miss that. So I began to invite other people to join me for a quick cuppa and chat but in a new place. That kept the rhythm and the sense of the activity without S having to be there (although for the first year I strongly felt she was).
I still feel the very strong urge to pick up the phone and ring Mum, three or four times a week - 17 yrs afterwards. I write to her instead, now: when it's really really strong, I get a pretty notebook and keep a little journal for a while, or write her letters. Usually at the time of day I would have spoken to her. Otherwise, I actually talk with her, in my head or out loud, D's used to it now and sometimes joins in! Usually very short comments (birds at the kitchen window, for example), or working my way through her recipe collection...
Each of us finds our own way. It's so deep and cold and thick, paralysing at first. I couldn't breathe, resented having to think. routine helps.
Maya and her sister Kitty were Shoah survivors. Bright, colourful, arty, witty, elegant, always glittering and laughing and finding something celebrate. Their shyer, quieter brother Alec married my cousin Rysia - my mother and Rysia knew each other in Paris after the War, they were about the same age.
Dad proposed to Mum by asking if she'd like to Rysia's aunt. When Rysia and Alec finally came out to Australia, he returned to university to study medicine; I was his first patient, on Graduation Day when he diagnosed my measles. So the family was always close, and Mum, Rysia, Kitty, and Maya and my Aunty Franka formed this kind of fun-and-art gang that ran all the parties and the children's outings and picnics etc.
Then Rysia died, Alec remarried, Franka cheated on my dying uncle...we grew up, moved, parents died... My sister has stayed in touch with everyone, picking up threads where the previous generation had dropped or broken them. She's just amazing.
This morning she mentioned that Maya has gone after 6 yrs of not being able talk, hear, see, move, care for herself in any way; her dementia had advanced and she did not want assistance but she did not want death. My cousin Julie had written movingly of her impending death.
I'm sorry for offloading here. This the 4th death in four weeks. Each was a woman I loved, with qualities and strengths I belive the world needs more of. I don't know how the world outside can seem so normal.
Have you thought of writing up the stories of that generation of your family, as much as you know of them? Either for their grandchildren, or for historical society or local Jewish community?
(((joanne))), from far away
Others have written, and painted, many of the stories. One of Kitty's daughters is a writer and social activist, and the other is an artist (I think she's had some small shows in NYC). Maya's daughters write and teach, both traditional and community extension courses, and at least one writes non- fiction. Rysia's oldest son married a journalist, and all of them are very strongly into the family history and connections.
But I think part of the generational loss is also the loss of the kind of rich networks and busy family life we had back then. It's a little like the background (but not the craziness) that's in Melbourne shows like The Slap. Always together, visiting, chatting, borrowing, sharing, creating, consoling, supporting, remembering. As my sister said, now there's no -one leading above us, and even our generation is starting to thin.
I hate it that our generation is subject to SO much loss. It's all around now.
I'm so sorry for your loss, Joanne.
Oh, thank goodness. I had a difficult time finding this thread again after everything was updated, and I couldn't remember what category it was in.
But then it occurred to me... we don't have any search feature at all on this new-and-improved site, do we? H'mm.
PeggyC said:
Oh, thank goodness. I had a difficult time finding this thread again after everything was updated, and I couldn't remember what category it was in.
But then it occurred to me... we don't have any search feature at all on this new-and-improved site, do we? H'mm.
I expect that it is "Coming Soon".
I have the thread bookmarked, but everything since the Dawn of Time is carefully carried over and now resorted into alphabetical order. So I'm going back through my most-visited categories, most-visited threads, re-starring them, and making sure that somehow they'll show up in my 'Recently Updated' views.
In happier Caring news, since we all need a bit of a lift, one of my ladies (a Holocaust survivor who suffered terribly yet is often overlooked, as she isn't Jewish) turns 92 on Sunday! Still managing fairly independently.
Actually, SAC, someone pointed out to me that the search function is at the top in the center. It's just rather small type, so I missed it altogether. I haven't tried it yet, though.
I HAD this thread bookmarked, but I don't think bookmarks carried over. How are you "re-starring them," Joanne??
Pleased to hear about your 92-year-old spry survivor.
AHHHhhhhhhhh, found 'em! But I wish they were still down the lefthand side next to the listing of threads in general. Oh, well. Something else to adapt to. I can do that. ;-)
Up at the top of the screen you should see your user name - if you click on that, a drop down shows up, and "my bookmarks" is one of the entries. You should see them there.
Bookmarks are listed under your account details now, Peggy. But because everything is there, I'm just re-starring them again, at the top of the page, so that I get the message Your Discussion has been Bookmarked. It's then added to your list, but not in any other way easy to find from a main page.
I miss the Last 24 snapshot of overall activity. But I know this is evolving.
Edited to add: had to help D get on, and then he had to get a new avatar... But he's all set to lurk now! *laughing emoji*
I found the bookmarks right after asking, but now that's on the previous page, LOL!
Everything is coming together; it's just taking awhile. Good thing I'm fairly patient, as long as things are evolving in the right direction.
This is an encouraging development! Innovative town planning. I used to work in Beechworth (remember my early MOL years, when both D and I were studying, and Mum died?). At that time it was very important to the entire community that 'social inclusion' truly meant people with disabilities including mental health and intellectual disability be able to live independently, and choose their daily activities in the town like anyone else. It's a tourist town, and a semi-isolated regional centre with a prison smack in the middle, next to a stack of historical sites. So it was important to train shop people and drivers, and all kinds of people you wouldn't think about, in hosting and working multi-disabilities, and strength building for accessibility.
So I can see this working well even though far little detail has been so far little detail has been released.
URL http://www.bordermail.com.au/story/3017697/dementia-friendly-living/?cs=11
Feels like more than a week since any posting here...just checking everyone is OK?
Is anyone else finding it really difficult to figure out which bookmarked threads have been updated and which ones haven't? I am having to go back through threads repeatedly even though nothing has changed, just to find out whether one such as this, which is important, has had any action.
And the bookmarked threads list is in no particular order. Not alphabetical, not chronological... just random.
Oh, but while I am here... I have been going through a lot of my mother's stuff that I have in boxes, and it's been ... difficult. I came across yet another notebook of hers that she was adding notes to while she was in assisted living. I can see how shaky her handwriting had become, how much she was struggling, and how much she hated being there. I found a note saying she had spoken to my brother, and he had promised to visit her the following day to talk about how to make her feel more at home in the facility. She had written it down so she would remember, but I'm sure she then put the notebook down somewhere and never saw it again. Other pages had names of her friends and family, phone numbers for me and my brother and her closest friends... heartbreaking.
And then the photos. Dear lord, the photos of days when the family was young, of her with her parents and sister, her mother and aunt as little girls... *sigh*
I have been "holding it all together" and managing my MIL's care from a distance for almost a year now. My husband is now in charge of the weekly visits I am in charge of all the financial paperwork, bills and medical forms, ordering supplies needed, the caregiver management, doctor's appointments, estate planning issues etc.
I sense a change in the air however, even from this "distance". I can not put my finger on the specifics but I had a dream last night that REALLY rattled me.
One of the hardest things about caring for a memory-impaired senior is not knowing how they are being treated. The fact that they remember very little that is "real" and hallucinate other things really muddies the waters.
It's not just the possible theft of her belongings I am worried about, it is her physical self and safety. She is so vulnerable because if anyone did anything hurtful to her she would not even remember that it happened let alone who did it to her.
I wrote about the amazing Beacon Jewelers that came out to Winchester Gardens (on a weekend) and personally cut her wedding ring off when her finger had become terribly swollen. We later found out that her finger is broken. How did that happen? According to the doctor, the break is not the type of break that might have happened if someone were trying to forcibly slide her diamond ring off of her finger but still...it gets you thinking.
My MIL met a gentleman "Mr. L" at Winchester Gardens just weeks after moving in. They became sweethearts. Her cared for her, spent time with her every day, they took meals together and played cards together. Even when it became obvious that her memory was slipping away he stayed by her side. Last June "Mr. L" had some scheduled surgery and sadly never woke up. My MIL did not remember him and therefore did not mourn his loss.
Last night, in my dreams, "Mr. L" called me on the phone to warn me and to discuss my MIL. [I still have goosebumps.]
Some people have recommended to me in the past that if you want to know how the person is being treated, show up unannounced at different times of day or different days of the week, to take them by surprise.
I used to worry about the same thing. Short of planting a nanny cam in the room, there really is no way of knowing for sure, and I found that very scary.
That dream would have freaked the hell out of me.
It's amazing how our subconscious minds can weave different threads together when we are worried or concerned about something.
I agree that being a visible and frequent presence at an assisted living facility helps - it helps you know your loved one is being well-cared for and it helps the caregivers know how to deal with your relative/friend. I know I was at my mother's place most days, at different times (as much as I could change things around when I was working - it was much easier when my schedule was more flexible).
The staff also got to know me and other family members and if Mom was having a difficult day, they'd reassure her that I'd be there, they'd use my name and talk about me and that would comfort her. And once they got to know me, they would tell me about her days and what she'd been up to....not that they wouldn't have shared this same info about other residents with those families, but they didn't see everyone quite as often.
Mom's things used to wander, but she would also wander off with things belonging to others. When you don't remember what belongs to you and what doesn't, it's hard to keep track of things. I remember one lady (just about Mom's size) used to often be wearing Mom's sweaters and vice-versa. That woman's family wasn't local and she didn't have much company, so we'd hang out with her, too. At my age, it was nice to look around and be one of the youngest people in the room!
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I would call the funeral director and ask about specifics. In this area, the amounts are so high as to include everything, or the priest's or musician's fee is an extra to the cost of the church, but the funeral director knows these details. Sometimes the church's website might give a clue (things are usually spelled out for weddings rather than funerals). If you wanted to do a little more research up there, you could find out how much a restaurant might charge for a private affair, subtract out what you paid for your catering, and come up with a figure for the facility. Something extra for the priest would probably be gratefully accepted no matter the amount.