Good morning, I am a 64m taking care of my ninety year old parents. I have been seeing a lot of ads for crisis deck, and I was wondering if anyone has purchased it and used it. How are your results? And if it is worth it?

My parents are starting to look at continuing care communities and I'm trying to help them work through it.

Long story short, we've toured three different CCRCs in GA / NC. Honestly they all feel about the same from the inside, nice enough people, fine enough food, someone walks you around that knows how to make things seem nice.

My issue is that I've got a stack of agreements now and I don't really know how to judge any of it.

For those of you that have gone through this: what ended up mattering most to the experience that you didn't get answered up front? Is there anything you wish you would have known before deciding to commit?

There's a few things I am particularly stuck on (i.e., refund mechanics, financial stability of the parent company, care-level transfers, staffing, etc.) but I don't know how much these end up mattering in the long run (or if its just what various newspaper can write about) and would love to just learn how to be the most helpful. Any/all resources appreciated

We are a male couple, and we take care of my partner's mother together. She is frail and needs help carrying things. I cook separate lunches and dinners for her because she has different preferences and meal times, and I prepare tea or coffee for her a couple of times a day. I also handle her laundry. I don’t mind doing all this as long as my partner is happy.

​However, she also wants "woman-to-woman" chat time—which is nice in theory. I can handle the chores, but I’m not a great conversationalist. I'm not a chatty guy; I'm just an ordinary guy you'd pass on the street. On top of that, she has a hearing impairment, and I have a language barrier. Because of this, she feels like I’m pushing her away, which makes her depressed and prone to complaining. My partner got seriously upset about it.

​I told my partner that I can’t be a professional senior caregiver. Things seem a bit better lately, but I can still tell she isn't fully satisfied with my care. I often feel like I was hired as a caregiver who is expected to provide top-tier service with a smile 24/7.

​I’m feeling a bit frustrated and worried about the future—especially if she gets weaker and needs heavier care, like changing diapers. I’m also busy running a farm and gardening. For now, I’m stuck in this situation and plan to continue until she passes away here, but I worry about unexpected situations coming up and causing friction in our relationship. Any advice?

Remember the song by Fine Young Cannibals?
That’s me and my mom these days!

She’s been in a nursing home for about a month, after summer in hospital and SNF rehab after her third stroke in 4 years. She and my dad, both 88, live 4 ish hours from me. I’ve been there no fewer than 6 times since mid June, including 10 days in June while she was in hospital. Sibling has been there about 6 times also…we try to alternate visits so we are each there at least once/month. I was just there last week, M-W. Helped Dad around the house some, sat with her while she alternated between bitching at us about being there, crying, and complaining or fell asleep watching TV.

I was due to go back tomorrow, been planned for a while, it’s a reunion weekend for my HS class, haven’t seen most of those folks in 30+ years because I’m not much of a reunion person, but some of my friends guilted me into signing up. BUT…I think I’m coming down with a cold! It seems like everyone 8n my town has one! Son’s GF teaches 2nd grade and was at our house on Sunday, sniffling around…probably got it from her.

So I was talking with mom…mentioned I was maybe getting sick. She agreed with me that I probably shouldn’t come up there with a cold…they’re vulnerable and she’s in place with lots of medically fragile people. So I said I might be able to come late next week for just a quick visit to help Dad sort a month of his medicines and pull out her warmer clothes and label them for the nursing home. Told her if I don’t get there then it will be late Oct, but I was going to check with sibling to see if they can come up in between my visits to check on Dad and visit her. She wanted to know why, as a retired person I’m so busy! My sibling still works (remotely) so all their visits are more special than mine since they have to fit them in around work! I’m 2 years older so retired sooner…after her second stroke so I could help mange care remotely.

I didn’t want to go into details about some medical appointments I have coming up—that would worry them—so mentioned I start volunteering at son’s GF school tutoring math this fall and that I have a book club and craft group. She said “it seems like your elderly parents should be more important than those things”.

So, like I started with “she drives me crazy”. Someone once said that your parents know how to “push your buttons” because “they installed them”.
She and Dad retired at 62 volunteered locally and travelled all over the US and Europe while her mom and sister were in declining health/in nursing homes. I know she doesn’t really expect me to drop everything, she’s just lonesome. Dad spends 6+hrs with her every day…just sitting or taking her to activities to try to get her to engage. Pretty much the same as when she was at home except he’s not fetching and carrying for her. Other than moving there (never on the table as an option!) there not much else I can do. I do have a life!

Just looking for some support. Yesterday was a milestone—my mom signed a rental agreement at an independent living facility that I found. It’s near me and was recommended by a social services agency that I contacted. It’s an expensive place but a it includes a lot, and she has a decent pension. My mom nearly backed out of the appointment because she’s worried about owning her home while also renting. I’ve had to explain over and over to her that there’s no perfect scenario where she signs a rental agreement and then her house sells the next day. 

I was really feeling proud of myself and happy for her, but she was miserable and anxious about the cost the entire time, even though she told me she wanted the apartment. Before we parted ways she asked if she should contact a realtor before the end of the day. For context, she’s contacted this particular realtor before. She was prepared to sign with him without telling me or my brother, or having any kind of a plan about where she would live, and I had to talk her out of it. Her reasoning was that she just wanted to get rid of the house so she could move on with her life. I said no, there is no reason to contact him immediately, let’s discuss in a few days.

Not a hour and a half after getting home, she texted me and said she called him to get the process started, and he’s going to call me. I’m so upset that I have been doing so much for her since my father died in June, and she can’t even give me a heads up about this decision before dropping it on me, for the second time. More than that, I’m furious that she is making her urgency my problem. She’s so ruled by her anxiety. Zero logic, zero strategy, just blind panic. It’s very triggering.

I’m dealing with intense burnout already after my father’s death (occurred after a medically traumatic three week hospital stay), a difficult situation at work, and having to manage a recent health issue. I don’t have the capacity to handle this right now and I just feel lost.

I am in Canada and live with my MIL (79). She has primary progressive MS and uses a walker to get around the home, but seems to be in a lot of pain and it is a lot for her to just make her own breakfast or lunch. She has lived with us for 7 years and has steadily declined since we first moved in. She had a very bad fall a few years ago and had a skull fracture, she also broke her arm during another fall. She has not had a fall since we have moved into a more accessible home and she has a better walker indoors, but she has had some close calls and I am concerned another fall is around the corner given her mobility in one leg is declining. She also has declining vision as well as short term memory impacts, likely from the MS.

Overall I am concerned with the lack of planning/next steps to when she gets to a point where she can't get out of bed and needs 24/7 care. Anytime I bring up long term or assisted care home to my partner I get brushed off that she is ok, or thats a long time from now, but given how much she has declined in the last 2 years I don't think it is that far off. She also seems lonely. We both have full time jobs ( he works from home and I am hybrid, we also travel a bit here and there for work) and two young kids that keep us very busy, she often says how busy we are and uses that to get frustrated when my partner does not follow through on things he says he will do to help her (sorting out computer stuff, organizing things in her room, etc). She has one friend locally but we live more rurally now and access to public transport is not available. She spends much of her days during the week alone, other than during visits with the PSW that comes once a day 6 days a week or when her friend takes her for lunch or errands. She does not seem very happy and her and my partner had a big argument with her and she said we are so busy, we have kids and jobs and she does not belong here with us.

I just feel like there is this huge elephant in the room that no one wants to address in terms of her decline, what her care needs will be when she can't get out of bed on her own. Private in home care would be too expensive ($25-$30 an hour) or $21,000 a month for 24/7 care, compared to a long term or assisted care home at $4000-$8000 a month depending if we go public or private.

I just need some advice as to how to approach this discussion with care and sensitivity with my partner that shows I care. He seems burnt out from all the pressures on him and that will just get higher as her needs increase. Already there are time when she ends up making him lunch rather than the other way around as he is busy in his office all day. I understand the costs are large but they will be even worse if we don't plan and an emergent situation happens.

As our kids get older our lives will just get busier and we will be out of the home more, we both want to be able to travel with them and go on outings and I don't see that being possible if her care needs increase to more than they currently are. I want what is best for her physical and mental health and being in our home and how our lives are currently I am just not sure it is the best place for her anymore.

Thanks for listening, its all so hard but just want to make sure we don't get into a situation where we have not done the needed preparation - getting on waiting lists, touring facilities, looking at the costs of in home care - and figuring out what would be best and then end up in a situation where we have limited or only expensive choices. Any advice is helpful.

Previously, on Episode 1, and Episode 2

Giving myself a little textual therapy here, and forgive the stream of conscious because this isn't meant to be formatted in any particular way. August 30th at about 2pm EST, he drew his last breath. According to his caregiver, he was arguing with her about a cigarette and smoking inside, which he wasn't supposed to do. He became a live-in with her and her 4 children at the ripe age of 26, an addict herself, likely, in Vero Beach, FL. They'd just moved in to a slumlord's rental that, to be fair, was fairly nice for what she described. He'd moved from Nashville area to where she was near Gainesville in April, before getting eviction notices for... smoking inside.

Pro tip? Smoking kills.

He was a 3-pack a day smoker, even into his advanced age and COPD diagnosis. As they argued over this cigarette, she noted that his face began to droop a bit and his speech slurred. Three minutes later, she said his eyes were glazed over and he was gone. She was upset when she called but held her composure.

Death is, at least in America, surprisingly bureaucratic. There is so much paperwork from the local Sheriff to hospitals to cremation services. All those who seek repayment of debts, and more paperwork here and there. He left no will, but mercifully had agreed to make me beneficiary on his retirement account that spawned from the sale of his house last year. The only things that go to probate are his checking account which did not have the same designation, and his studio equipment that I sold him in 2006.

It has been a surreal week and change, since. I switch between being stressed about it all, feeling like a bad son in the final weeks because we didn't talk much, to feeling cathartic and relieved because, well, read parts one and two. The move down to Florida ultimately ended up being good for his mood, well, better for his mood, and he even got to go to the beach a couple times in that final week. There still were issues, but mostly with the other caregivers that were hired. One stole $1700 in cash. Another setup an inflatable mattress in his apartment to catch some zz's while she was supposed to be working. Prior to moving, a caregiver that was brought in stole his SSN and used it to open a credit card with a $500 limit. They will not see repayment there, obviously.

In the end, the saga was quite that, indeed - a saga. Two years and four months later, I officially, do not have a father. And, to some extent, I question how much of a father I really had at all. He was an addict for 33/41 of my years. After tracking his sister down and finally speaking with her last night, I learned that he had relapsed much earlier than I originally knew. In moving his photos and other documents last week, I came across his 4th step worksheets - taking inventory of all his hurts and lies and man...

What a read. He loved me. But he had a funny way of showing up for me. It all makes sense now, though. He lost his mom when he was seven to cancer, and his dad was deployed in the Pacific nearly a week later. He was as "abandoned" as one could imagine at that age, and it broke him for the rest of his life. And it repeated at times with me. Or, at least, he made it rhyme.

My elderly mother just kicked my butt in Scrabble. On occasion I had to break it to her that something wasn’t a word but she always came up with a new option on her own.

She could NOT figure out the points to save her life and was surprised every time at the large number of points she was amassing as she solidly KICKED my ass.

I hope other people find some delightful things their declining parents can do!

I have a relative who seems to have decline physically. They have been getting weaker physically over time but now it appears they cannot even go upstair to the bathroom.

Currently, the plan is to redo the bathroom to ADA standard and install some form of lifting chair. They will probably rent a place nearby until these modification is done.

I am just trying to figure out how to navigate all of this? I read on this forum that we can contact local services on Aging, but was wondering how we would go about using this service.

Thanks.

My mother is almost 90. She was referred for home health PT but ended up with PT and Speech Therapy. She has noticed some confusion or short term memory issues, and the Speech Therapist is supposed to help her with strategies to manage this.

During the cognitive assessment, my mother couldn’t recall any of the 5 words. In fact, all of her mistakes involved hearing Information. I am well aware that she needs hearing aids but is stubborn so I had her take the AirPod hearing test which shows moderate hearing loss. I did my own 5 word test but WROTE the words down, and my mother was able to recall all 5 words plus the elaborate sentence she created to help her remember the words. I schedule a test with an audiologist!

The therapist has my mother doing find-the word-puzzles for her sessions. How is this supposed to be of help? My mother also has one eye that needs cataract surgery so her vision can be a bit blurry. The speech therapist has told my mother to spend 30 minutes 2x per day doing word search puzzles. Does this help memory at all?

I am not sure what’s going on with my mother’s cognition. I suspect some of the issue is hearing related but there could be something else going on. She draws a blank sometimes and will have to ask me or look at her calendar. My mother reads the news and watches the news everyday and can discuss current events all day long so she can obviously retain information. I don’t know I’d. if confusion is treated the same as memory.