A brief summary: my mom is 90, always been very active and independent, friendly and sociable. She has lots of great friends who call her and invite her often.
Last May my father died, after a long illness; after that she aged instantly, fell ill this summer and lost the sight of one eye. She's now not self-sufficient anymore, she started having lots of memory problems, she's sometimes confused and needs help remembering medicines, appointments etc..

She had a few confusion episodes that really made me worry this past summer so I took her to the neurologist and thanks God she passed the MMSE with full marks; the doctor said she just had a very tough year and that she's emotionally adjusting and recommended lots of socialisation and activities; so I enrolled her in 3 different activities per week and she’s always very happy to go out and very energised when she comes home.

We also have 2 wonderful carers who help us for a total of 5 hours per day, and then I visit her twice a day, one hour in the morning and one in the evening, to make sure she's ok, to chat, play with the cat, have a coffee, help her with medicines, clothes, shower etc...

Still, it doesn't seem enough. Every time she's at home alone for a few hours she gets confused, and depressed. Which I can understand. What I really don't understand is that she never seems able to invite her (many) friends around, commit to their invitations, make plans with them... she's constantly undecided and postpones all decisions til the very last moment, when it’s too late, or simply refuses the invitations for no apparent reason. And to be honest, this has been going on for years; she just waits for people to call her and call her but never call herself, never commits. Even with me!

The result is that I constantly feel terrible because I feel her only emotional support; she never asks me to visit more but she's always sad when I'm leaving. This is starting making me feel resentful, cause it’s true that I’m her only family now, but she truly has lots of people who love her beside me.

I have tried to talk to her friends about the memory problems but it's hard to explain what the problem really is. It seems more like inability to plan and commit. It’s also hard to organise these meetings myself as they call her directly…
I have also started some counselling recently and the therapist suggested to let her carry her own weight. Which I think is a good suggestion, but on a practical level is a bit hard to implement; it’s so hard to see someone going from happy and energised to lonely and confused in a metter of hours, again and again.

Is there a way to ask for help from her friends in this matter, and how? How would you word it? Is this something you would do if you didn't have any family close?

Thank you so much in advance for any ideas!

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GardenArtist, I'm so sorry that you lost your sister. This must have been terrible for you. More and more I can see how this place is a place of survivors, and that the wisdom that I find here is something I'll never find in any counselling.

Perhaps it's true that we do sacrifice ourselves, a lot, but this is not necessarily codependancy, as I felt it was subtly hinted by my therapist; it's being a carer, and having been through lots. Just this.

As I often feel reading your posts, you really reed minds!
It's so, so weird how similar our experiences are, and how difficult is to explain to someone external what they are really about, and where the tiredness comes from...

* creating a calendar + many (many) reminders: check
* realizing mom doesn't remember to have a calendar, nor the reminders: check
* drawing much bigger, huge calendar for her: check
* asking her friend to pick her up: check
* reminding mom a zillion times her friend is coming to pick her up: check
* realizing mom is still in her pijamas eating a muffin and watching TV when her friend comes to pick her up: check

Oh LOL. I have to smile as you really are making me think of all the things I do, frantically, hopelessly, every day and then I wonder why I feel so tired...

I don't know if it's trauma, if it's age, if it's dementia, if I'm codependant... all these after all are just labels.
What I'll do, I'll buy a calendar with kittens AND dogs AND flowers. It'll probably make no difference but at least every time I'll watch it I'll think of your post and smile again.

Thank you :)
Helpful Answer (13)

If you watch the Teepa Snow videos on dementia, one of the things that happens when people start to lose some cognitive function is they lose initiative. I saw that in my mom. She was able to live on her own until her death at 97. But she had some cognitive decline (memory and reasoning ability) and lost her ability to get from point A to point B, even when she wanted to. For example, she'd say, "I'm going to write so-and-so" only she never did. I'd take an addressed birthday card for her friend and it would sit until I sat there with her waiting for her to write a short note on the card. That was NOT like my mom. But she just couldn't make anything outside of her normal day-to-day activity happen on her own. She was constantly going to do things that she never did. After watching the Teepa Snow video, I finally understood what was happening.

My mom was kind of a loner and I became her whole world and sometimes it grated on me (the responsibility), but I finally realized in my mom's case, she could change it anytime she wanted. She lived in independent living and had people all around her. But I think she knew she had some cognitive decline and just didn't want to be around others anymore.

Could you set up some standing dates for your mom with her friends? Every Monday she has lunch with Sally and every Wednesday, she meets Louise for coffee at 3 PM at Panera? Something like that? Then it would just be up to you to make sure mom knows the schedule and the friends are notified if there are changes. That's the only thing that I could think of to make her friends understand how to get together with your mom. It sounds like you are doing a LOT for your mom and she's lucky to have you. Sometimes we can't "fix" everything for our aging parents, which can be very frustrating.
Helpful Answer (11)

If she's "confused and depressed" at times, she might not want to commit to an outing.
I think older folks, with a bit of cognitive decline, sometimes don't want others to know that they're "slipping", so they shun visits, etc.
Since your mom doesn't have dementia, ASK her if she would like you to arrange outings with her friends. She may not really want to go. My mother would NEVER admit she wasn't as sharp as a tack, she would tell you she was just fine (pride). But she couldn't distinguish an aspirin from a vitamin and would go to meals hours before they were served.

You say she gets confused after you leave. Is your mom easily "re-orientable"? Is she safe to leave alone?
She also has "company" (caregivers and you) for a total of 7 hours a day. That's more than the average senior. Maybe she would do better in a senior facility (independent or assisted living) than living alone at home.

Since you are already feeling slightly resentful (which is normal for the amount of time you invest), I wouldn't suggest that she move in with you.

You sound like you're a wonderful daughter and are doing a great job. But, like Blannie said, sometimes you can't fix everything.
Good luck.
Helpful Answer (11)

I'm seeing the same issues about which Blannie wrote. I think sometimes the changes are so abrupt that we don't realize they're occurring, but when they do, it's more responsibility for us. Even if you created a calendar for her, you'd probably have to prompt her with reminders if not arrangements to engage in activities.

But I won't deny that I often have the same problem myself; sometimes it's just too much to handle social engagements with all the caregiving activities, so I just let the former drift by.

Asking others to take the initiative in providing transportation for events could help, but make sure that Mom is reminded beforehand (and helped to get ready, if necessary), so she isn't caught off guard.

You might get one of the those huge calendars, or something smaller but pretty, with cats, dogs, flowers or other lovely themes to draw her eye to the current monthly page.

I think when someone reaches this stage, "carrying her own weight" isn't an option w/o some kind of family support.

And this isn't necessarily an age related issue; I believe it's a trauma issue. I experienced it after my sister died.
Helpful Answer (10)

blannie, thank you! I needed to read all you have written.

Deep down, I know that the neurological evaluation was a bit on the optimistic side.
Deep down, I know that she can't help it.

Why do I still get so frustrated, and why I feel resentful, it totally escapes me.
It's like a part of me doesn't want to accept her cognitive decline. Or perhaps the responsability attached to it, as you say.

Your idea is the only viable one, one that I had had myself but just felt yet another thing to organize, and after many years of (various) illnesses and dramas I'm probably just feeling tired. But the alternative is just silly: I end up discussing this with my mom, and going nowhere, of course.

Your example of the card is spot on; it happens the same every day to me too, with everything, really. From toothbrushing to writing down an appointment; if I don't sit down with her and wait until she's done it it just doesn't happen.

I just wonder how long it will take me to fully realize that this is our life now, and that is ok.

Your words have really encouraged me. Thank you *hugs*
Helpful Answer (9)

GardenArtist if you're like our folks, you won't be able to find that note when the time comes. Hahahahahaha. :)
Helpful Answer (9)

I have a calendar planner but I forget to LOOK at it! ;)
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Blannie, I'm ALREADY having trouble finding things! I'll be a mess if I actually grow old!
Helpful Answer (8)

A handsome butler would do wonders for any of us when we're old ladies! Now that would be an old age addition that we could look forward to!

As to therapist's advice, you have to weigh it and judge for yourself. I've only seen a therapist once, over a decade ago, after my sister died and my father had made a very risky move that could have compromised his safety and health. Her advice was similar to that you received - it's his decision, let him deal with it and back off. I couldn't do that, and I didn't. And I thought at that time that her advice was cold and irresponsible.

I've felt the same sometimes when a physical therapist or occupational therapist give "advice." It was clear that they don't understand some aspects of aging. One PT'ist insisted that my then 98 year old father could handle about an hour each of PT and OT. I disagreed; it was too much for him. She continued to insist; I continued to disagree. She must have asked for a replacement, because she never came back.

I didn't tell her that the OT'ist had told me Dad was exhausted just from OT, let alone adding the more demanding PT to his regimen on the same day.

Next visit was with an extraordinarily sympathetic older man who bonded with Dad immediately. Some therapists just "don't get it."

So much for therapists being sympathetic - some are, some aren't. Listen to their advice, evaluate it, and decide for yourself. I won't deny that they often have good advice, but one of them also wanted to rearrange the bedroom, despite having been told that when it was tried before, Dad was not used to the new arrangement and fell out of bed once. So much for that.

I was wondering if you could give your mother an "assignment" to keep her thoughts positively occupied until you return again? Something with just a few choices, like would she like this or that robe, or calendar, or something that didn't really require analysis but would be based on a spontaneous reaction?

How sad it is that your mother is frightened of losing capacity. But, again, it's not limited to older folks with dementia. I've experienced that, especially with math skills. I'm sure I'm not alone. Our minds have only so much storage capacity, and sometimes I think that they're overwhelmed and the less important issues are moved to some off line storage. Perhaps that's why I take such detailed notes, as I did when I was working for documentation and billing purposes.

I fully understand your desire to keep your mother in an environment where she can be intellectually stimulated. From what I've seen in rehab, and just a glimpse of what's available in AL, I don't think you're going to find that there.

I've observed repeatedly that my father, and I would be completely bored with bingo and similar level of passive activities. And I do know that reading woodworking and aviation magazines helps keep my father's brain active, even while his body is seguing into more inactivity.

This might be a possibility. Since she's a retired doctor, have you thought of contacting hospitals, or perhaps medical associations, to see if there are other retired doctors who might want to network?

Another thought: AAUW- American Assn. of University Women. I attended a few meetings and was amazed at the intellectual capacity of the participants. It was like being in an honors class back in college. Foreign relations were the topics of conversation, focusing on different geographic areas. After the meeting, I had a sense of mental rejuvenation.

Even if someone doesn't participate, just considering other women's contributions would be stimulating.

If your mother likes English literature, the Jane Austen Society of North America is a good one, if you have a good leader. There's a strong 1800s English culture element, with frequent discussion of the lack of women's rights, the "entitlement" inheritance prejudice, and similar topics.

One of the libraries in our area has concerts monthly. I just realized I missed the Vive la France concert last week (darn!), but there's a chamber music concert next Friday.

Events like this might stimulate your mother.

You mentioned your country; may I ask in which country you live? If, for example, it's one of the Scandinavian ones, I'm wondering if there are more community activities, since it's my understanding that there's a more sophisticated sense of community involvement than there is here in America.

Now, where can I look for a handsome young butler to occupy my thoughts while I'm struggling to help my father?
Helpful Answer (7)

GardenArtist, you gave me so many precious tips and ideas.

First of all, I have decided to temporarily suspend the therapy and see how it goes.
(please don’t feel responsible, I was already thinking about it, it’s not because of you)
I just decided that I can't afford to waste time working on a co-dependancy problem that I don't have, emotionally, financially e mostly because I do have so many other things I'd like to do in my free time :)
I've had some therapy in the past to help me through a rough patch and it didn't feel so cold, as you say, it was actually a great, empowering experience. This is how it should feel like.

Second, I'm so sorry that your dad had to do with some crazy occupational therapist.
It's hard enough to be old, and fragile, the last thing one needs is to feel exhausted and not up to the task; good job that you put your foot down and went with your instinct. More and more my instinct is what I'm learning to rely upon, above everything else. Many Kudos to you.

Third, you gave me so many ideas to try and implement with my mother that I really want to make some experiment and then report back to you.

As your father, my mom reads nerds stuff too haha! :D Like Science magazines, Philosophy and Astronomy… the times I find her most depressed is when she can’t find anything to do and ends up watching TV. At the same time, sometimes she enjoys those silly TV quizzes in a way that leaves me pretty speechless! Like they are the most clever shows ever!! It’s like to have a weird kid who sometimes is a genius and sometimes is just a kid :)

So, I think I will implement the following, which I really liked:

* contacting hospitals, or perhaps medical associations for networking
* volunteering (somehow; I still have to think of this one)
* giving her assignments based on “first response” (brilliant!)
* involving her in some Christmas activity

I’ll have to skip the American based ideas cause we are in Europe, and no, I’m not in Scandinavia, I’m just in Northern Italy where the system is not that enlightened yet :D

I’m thinking now that helping me organising these activities is precisely where her friends would come very handy, infact. This could be absolutely perfect!

I’ll need some planning, and some time. Just give me some and you’ll see!

*hugs you*
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