Just reading through some of the more recent posts on this thread (can’t do all 7000+) and wanted to send hugs to you all.
My parents both died over a decade ago and it was very hard, especially dealing with my brother around their care. My sister was great but he is a complicated individual.
And now his wife has fronto-temporal dementia and it’s difficult. They weren’t able to have kids and he has a lot of expectations about what my sister and I should do. He’s a very should-y person. His wife, my sis-in-law, is a very sweet person but her family lives 4-5 states away and there are a lot of health issues going on there too so her sibs aren’t able to help much. I live in the same town as my bro & sis-in-law, though, and there are expectations I am constantly not living up to.
Anyway I just wanted to say hey and give a little background on their situation because I may have to vent here.
I think this seems like a very supportive thread and y’all are really helping prop each other up. It’s such an emotionally wrenching time taking care of aging parents and other loved ones even in the best of situations. Add some strained family dynamics in there and you get heart-wrenching + guilt + anger + a huge dose of burn-out. Hugs to you all there in the trenches. Take some time to take of yourselves too.
Aww thanks. I am not really involved in the caregiving – just involved in watching my brother try to cope (poorly) with the really crappy situation. He doesn’t do stress well at all.
Our parents both had dementia – dad had vascular and mom likely Alzheimer’s. FTD is presenting more like autism in my sis-in-law’s case. (Have a niece with severe autism on my H’s side). My sis-in-law has ALS in her family and there is a genetic connection between ALS and FTD.
My brother needs help but doesn’t want to use any of the copious resources in our area. And he gets really really angry with me (little sister) for making any suggestions. There is a FREE respite program at the senior center in our area for dementia patients so their caregivers can get a break, but he yelled at me and told me that would be more work for him?!?!? There are other excellent (paid) day programs for people with dementia and many support groups including one for caregivers of loved ones with FTD, and in home health care, etc, but he refuses to do any of that. He has plenty of $$$ to pay for care.
It’s sad to watch and while I want to help, I need to set boundaries and I don’t want to get yelled at and have fingers pointed in my face (literally). And even when times aren’t bad he is easily triggered. When the situation is this bad then his patience is really shot.
He was also very stressed and didn’t cope well with our parents’ decline and yelled at me and my sister about us falling short according to his tally – he’s a scorekeeper. I had babies during this time – my youngest was born while my dad was in the nursing home and my older one was 3. So I have PTSD from the blame game he played back then and it’s hard to put myself in a position to be on the receiving end of that again, but I do want to be able to offer some help. I just keep wrestling with trying to find my boundaries and what I am willing to do.
I am so tired of this rollercoaster. Three steps forward, two back. We are definitely on a downturn right now, and while the previous six weeks tells us she could turn it around and get better, when you are in it, we don’t actually know that this time. She was in a rehab center for two days, and then took a turn for the worse, pneumonia again and now blood clots, and so is in a regular hospital. It’s her fourth hospital in six weeks. The drama each turn causes is awful too, besides just the fear, uncertainty, there are the medical terms and complications and trying to understand why the doctors are suggesting what they are suggesting.
Part of me just wants to get off this rollercoaster and say what will be, will be, and I have done everything I can do. I will check back in a month. But then, of course, that is not fair because the rest of the family (siblings, nieces, nephews, dad) are in it daily and they aren’t stepping away. They are the ones that live locally year round. So, yeah, lots of guilt there.
I think the shock that we are even this situation with a previously incredibly healthy, active, 80 year old who looked and acted 65 has worn off, and the new reality of an elderly, frail, ill parent has set in. But it then puts me in a new mindset — should this elderly, frail, clearly very ill person keep fighting? Or is time to just let her “go home” as she wants? She hasn’t said hospice, but that seems to be the implication. And the family could push that conversation, but no one is quite there yet. “Luckily” we have some plans with in laws this coming holiday weekend I can’t get out of, so I will be leaving the area for 5-6 days. But then the daily updates are just tough enough and bad enough that it isn’t really a mental break as it should be. It’s incredibly tough. Glad to have this place to get these thoughts out and down. I know anyone who has or had a critically ill parent understands.
Hospice isn’t necessarily a bad thing. Even if she makes the decision for hospice, it can be a good choice and better quality of life, for whatever time is left. You do want to wait until everyone is ready for that choice. (I am the one the hospital liasion pulled aside and whispered “have you talked about hospice” and it’s a shock, for sure) I feel like in and out of the hospital is pretty typical for the elderly, and while it is super stressful, you can’t know the outcome most of the time.
Try and concentrate on today. Just today. You don’t have to decide much , today. You just need to take care of yourself, support your siblings (acknowledge their work, don’t second guess them, ask how they are doing, send them a card or gift) and don’t make too many conclusions. You just never know. And in a world obsessed with planning, looking forward, knowing the future, none of us are very good at “one day at a time” until we are forced to do so. You can do this, honest.
So sorry @MamaLilKat. It is hard hard hard, especially when they haven’t been sick. I’m guessing she didn’t have any advance directives like a Living Will. That can really help the kids and parents all be on the same page. Hope that she can rally again and get out of the hospital and her mental outlook will improve too.
I really hope you can compartmentalize and truly enjoy your time away over the holiday weekend. Your mom’s problems will still be waiting for you afterwards, so do your best to enjoy not having them front and center when the opportunity arises.
As for me, I am trying to do just that. We have had a two week road trip to Glacier Nat’l Park planned since January. Obviously, about 2 or 3 weeks ago, we cancelled. In canceling though, my husband made me promise we would do some closer-to-home trips (1-2 nights away) over the summer. We took the first of the three we have planned from Sunday to today. It was lovely to be away, and I tried my very best to just not think about what was going on at my parents’ house. Of course, upon my arrival home I phoned my mom for the update and none of it was good. That lovely “I’m away” feeling melted away in an instant. I’m still glad I enjoyed it while I could.
On that front, my dad is still progressing physically, but mentally, he is struggling. He is very depressed, and the anger and irrationality appears frequently, all targeted at my mother. He started on Zoloft just a few days ago, so we are still holding out some hope that once it begins doing something, things can change. The confusion and irrationality on their own are manageable (not great), but it is the extreme vitriol directed at my mother that is unsustainable. Today she told me she is not sure how much longer she can bear this arrangement. She feels if there is not some change/improvement by mid-August (after 6+ weeks on zoloft), she is going to think about selling their home so she can afford to put him in a nursing home. I know this is the last thing she would ever want to do, so I am just praying that things start to improve.
My mom called me twice today, and twice yesterday. Crying, confused, unable to articulate what was going on. They’ve installed a grab bar but she’s convinced she isn’t allowed to get out of bed. Thinks we are all dead and nobody has told her, woke up “and I knew something was really really wrong” Completely disengaged from time/day/morning/night and becomes very distressed if correcting her becomes necessary (she kept saying that Local will come today and help her, but it was 6 at night). Today she told me people made her get in all the white clothes so they could test her. She is unfortunately aware that something is wrong with her.
I asked her admin if a dementia diagnosis, formally, would be helpful. She said probably. I’m not sure what the point is, and my siblings are definitely not ready to say this is dementia. I guess the question is , do I push at her August appointment for some evals? I read through some I found from reputable sources and clearly she isn’t going to do well on those. Does anyone have experience with actual diagnosis?
I had to tell her today that my son and his wife had their baby, and she just cried because she never knit a baby sweater for them (she has lost the ability to knit, something she always did). I coaxed her out of that and she is content to just tell people they had a boy; she can’t remember their names, or the baby’s.
My mom was formally diagnosed with ALZ by a neurologist and he let us know when she wasn’t able to make decisions for herself. That was helpful for us in being able to sign legal documents related to her medical care, move her into an appropriate care facility, etc… The assessment itself was pretty straight forward.
I’m so sorry. That is very difficult to go through. I think a dementia diagnosis can be helpful. There are some meds that can sometimes help. There are some other things like UTIs that can cause psychosis in the elderly too so definitely worth getting everything checked out IMO. It may help for your sibs to hear it from a doctor too.
They did test her for a UTI, and for once that is not the culprit. It is unlikely that at nearly 93 she is a candidate for meds, I think? Her uptake is pretty compromised for various reasons.
It absolutely won’t hurt to have her tested. If she is diagnosed with dementia, it will force your siblings to face the fact that she has it. If there is no definitive diagnosis of dementia, it’s pretty clear from what you are posting that there is still an issue … but having a label can make it easier to move forward, so it’s wise to start with having her evaluated. (My mom was never formally diagnosed because her issues didn’t show up on the tests that they gave her - but we were all in agreement that her greatly diminished executive function was a problem regardless of the fact that it wasn’t labeled.)
Many places will use a dementia diagnosis to qualify for hospice. Your sibs may not be ready for that, but it would smooth that process. My mom started anti-anxiety meds at 91.
My mom was evaluated and deemed ready for AL or higher level of care (memory). We learned that once we agreed to AL, the CCRC had exclusive decision-making as to whether to move her to a higher level of care, over our and her objections. Because of this, we opted to keep her in independent living with 24/7 companions that helped her shower and made sure she ate. After she was hospitalized, she ended up in skilled nursing, in same CCRC.
Deciding to keep mom in independent living with 24/7 companions WAS expensive but it gave her more space and privacy and was an environment she liked. It was more room for all of us to visit and we (her kids) tried to visit at least having one of us visit daily.
My mom’s move to Assisted in her CCRC was very smooth and very helpful for her. It was such a wonderful place. The social workers did advise us when they thought she was ready to move to nursing care, but it was an appropriate move as was the move to Assisted. She had a very nice apartment in Assisted, only slightly smaller than her Independent apartment.
The first facility my in laws lived in had independent, assisted and memory care. IL and AL were the same rooms, so one didn’t need to move rooms when their needs changed. The memory care residents were located in a separate wing, but those residents mingled with IL & AL residents for activities as much as possible. The next facility MIL moved to had IL on the property, but they were condo-type units & residents had a separate dining room from the AL folks, and activities were separate. They also had memory care, but I never saw a memory care resident in the years MIL lived there. The current facility she is in has only AL & memory care, with AL on the first floor & memory care on the second floor. Some of the memory care residents will come for activities with the AL residents.
I’ve been surprised by how different every facility is … and the spiel given during a tour may not necessarily resemble reality. If anyone ever needs a facility in Augusta, GA, I can heartily recommend one. The other two facilities, located in another area, are blah at best.
