@jym626- yes it’s difficult to guess. She’s healthy as a horse though, and her mom died at 93. Until this illness she had never even had a cold in the four years she’s been with me.
The thing that makes it hard is when she cries,“When am I getting out of here! You don’t understand! It’s driving me crazy! I need to get out of here!” She starts to cry and asks this every day now. The emotional toll of putting her in a nursing home, seems equally as bad as the physical/emotional toll of taking care of her. I’m constantly questioning myself- could I have done more? Can I do more? If one month in there is driving her crazy, what will six months, a year, two years do? (And she’s in a nice place.)
Hard to watch this. Agree with SFMom that it is worth noting if her present behavior is a big change from baseline. Some elders develop confusion, anxiety and even psychosis in response to a physical illness, infection or protracted medical stay. This can occur in those who do not have dementia type problems, as well as those who do. Symptoms often resolve, though it may take time. There are medications that may help her be less anxious and staff may be able to assess whether she is a candidate for any of them.
That level of upset may be hampering her ability to take advantage of rehab. It is worth digging a bit as to what is bothering her, what she doesn’t like or is worried about. See how cogent the story is; it may help determine the best way to proceed.
My H and I have wrestled with this issue in a big way because of his mom’s severe condition (late stage parkinsonism).
My philosophical question is - how much is enough and where is the line with our own lives and needs. Usually I frame it (in my own head) as “how would I feel if my own children were in our shoes?”
We would never let our parents go hungry or be homeless or without health care. But we also are not going to light ourselves on fire to keep them warm either (don’t know why but I love that metaphor). If they don’t like the manner or way we care for them - perhaps that should have been given more thought in all the previous years of their adulthood? Aren’t responsibility and control two sides of the same coin? I’m sorry if this sounds cold and I don’t mean it to. I just don’t understand the - “I make it YOUR responsibility and then I criticize you for not figuring out a very tough situation to my exact specifications even though I didn’t put any thought into it myself.” ??? And toss into that mix all the extended family who also have judgmental opinions though they themselves don’t actually do anything for this person.
My H has been an independent, self-sustaining adult since he was 18-19 years old! On top of that, he has back-stopped his parents most of that time. He single-handedly got (well I helped him and then we paid and elder care lawyer) his mom into the best SNF we could find, and that was after a year or 2 of hiring help at her condo (which was 10 minutes from our house). Even then we waited 6 months too long. She was in dire straits by the time we moved her. My H has file folders 3 feet high in his office of all his mom’s stuff. I support him in anything he wants to do for his mom and he manages to balance it all fairly well, on top of running a business and caring for his own home and family.
When she is herself, she’s usually content/happy- humming and singing (a little too much for my liking, lol!). It’s hard to know if she would be relieved and more normal when she comes back here, or if any recent personality changes are permanent. It feels like as she regains some cognitive awareness, she realizes she doesn’t want to be where she is. The first two weeks she went along with the care providers without question. Now she is stuck on saying I can do that myself, or leave me alone, or I don’t need any medicine.
There are some hopeful behaviors. I asked if she wanted to write a card for someone’s birthday and she did. Her handwriting was legible/good, and she wrote a nice three sentences- coherent and appropriate. (At the beginning of rehab she scribbled a few non-words, so she’s come pretty far in this regard.)
@esobay I think I hear you dad say “I’m ready to die.” Is that so bad? It seems that he is emotionally in a pretty good place and telling you “I plan to die” I’m sure helps him with his existential anxiety, not that he has any real plans.
@psychmomma it sounds like you are in a tough spot with few resources to help you. But, if you bring her home and it is too much for you, can you spend down her resources and not wait 5 years for the Medicaid look back? You might want to consult an elder attorney. And, I understand the emotional feelings may be even harder.
I’ve been thinking a lot lately due to my parent’s situation and this thread about what our obligations are for our aging parents. But I do feel that we all do what we can for our individual situation. But, I am in a fortunate situation. My parents do have enough financial resources to weather forseen and unforseen events.
My MIL has in home Medicaid services and there is only a three month look back period compared to 5 years for nursing homes. She has an aide 6 - 8 hours a day 6 days a week. My useless sister in law mooches and lives with MIL, but we hope she would at least call 911 if needed. It is worth checking into because if she is eligible, it means someone can be there a few hours a day and can bathe her, cook for her, do her laundry and make sure she takes her meds. My MIL owns her own home and it will not be taken by the state when she passes.
Tech mom beat me to it. My dad’s long term care insurance covered in home care. He had 24/7 in home care. Never was in an assisted living facility or nursing home.
My sympathies to you. I understand completely. I have posted here about how my parents refused to pay for my college, refused to fill out aid forms and when I had to live at home and go to CUNY, they charged me rent, made me buy my own food and install my own phone, which my father would listen to the answering machine whenever a call came in and then he would pick it up and try to grill my friends for information. They moved out west in the early 90’s. I felt guilty and H and I bought a small bungalow home to fix up for them. They came back east and were so dismissive and rude about it and wanted me to buy them a car, put the utilities in my name, pay the taxes and give them an allowance. I finally told them to go back. I never saw either of them again before they died 10 years later. When they died, all I received was their final electric bill, which I refused to pay. When we found out my dad died, we were dropping D off at college for her freshman year. I opted not to tell her and then completely forgot about it until Thanksgiving! When I read these posts, I feel a distinct sense of relief that I don’t have to worry about them anymore. They loved each other but were incapable of sharing that with me and my sister, with whom I have no relationship.
For your situation, there is nothing you can do but offer to assist them in getting their acts together. I offered to pay my parents’ rent but refused to send them money after I found out that they sent it to my sister and then accepted a local charity’s payment of the rent. I offered to send the rent directly to the landlord but the address they gave me belonged to my sister’s friend. I guess they thought they raised a moron who wouldn’t check.
If your parents will let you manage their money and sell their home and buy something better suited in the same area, fine. Otherwise, you can do what I did, which was install caller ID (in those days, you paid extra for it) and screen their calls. I took about one in ten calls.
Looking forward, I have absolutely no regrets about moving forward and devoting my limited time and financial resources to my children and H and not my parents. They had their chance to earn my devotion and blew it.
You still have a chance to reconcile with them, if you want to, but often people like that are difficult. My dad was a narcissist and everything was everyone else’s fault. You can’t reason with people like that so I chose to cut them out.
OTOH, I will help take care of MIL until she no longer needs me.
@GtAlum , yes you are partly right in that Dad is saying he is OK with dying and maybe trying to say his goodbyes. How he gets there and how much warning I give my brother is my issue. He is a wonderful person. (both Dad and Brother since “He” was not specific)
@techmom99 and @heidikraut I, too, have no real REGRETS about having Mom in an AL place. Some twinges of guilt because of the way she cared for her Mom in her home but I would have been setting my life on fire to keep her warm if I had her even closer much less in my home. And one thinks it will be a short time, but here it is 5 years with Mom. She fell, broke her arm, fell knocked herself out, had the flu and almost starved to death…yet still there. One day at a time can add up to a HECK of a LONG time.
I am also very fortunate that so far, Mom has the resources to be cared for in a nice place.
Yep, it can be a long time, it’s been over 7 years since Dad died and I psyched up for 10 years, thinking that was a long time, but wow, it’s getting closer. Luckily my mother is cooperative and willing and I had always had a great relationship with her. But there are plenty of roommate issues that drive DH & I crazy & reading these threads does make me wonder what would happen if she needed serious help, but then I choose not to think too much about the exact track she takes. Having watched many seniors complete their lives, it is difficult to predict which will need help with aides, or help with a SNF and which will not, and so many different paths there, I will just roll with it as things develop. I think that is one really helpful thing about this support thread, it gives me so many reality checks as to how things might go, if any of them happen, at least I realised it was a possibility.
I occasionally have guilt about having my dad in Memory Care. Although I think it would be very do-able to have my mother, or either of my in-laws live with us, My Dad was not an easy-going person before dementia, and with dementia can be a real night-mare and it would have been a disaster. I am thankful that the social worker, psychiatrist, neurologist, etc… all told me that it wasn’t a good idea and I am thankful that my Dad still has an income that pays for it.
Thank you, everyone who participates in this thread.
My parents and ILs have passed, but I have a brother 11 years older than me who is not married and does not have children.
I have this sense of dread that when the next health crisis for him comes along, there will be too much put on my shoulders in a very short time, and we will be ill-prepared.
He has been dating a new GF for a little over a year now, and believe me, I hope it’s serious and the relationship sticks!
I’m named executor of his will, and I have springing POA papers. But, I’ve got my head buried in the sand. I’m still very ignorant of the ins and outs of navigating the system should he have a stroke or something that would make it impossible for him to manage his affairs. So many moving parts, ugh.
My other two siblings do not live in the area, and since my brother has no wife and no children…it’s naturally assumed I’m the one. I mean, who else would step up?
Reading this thread is both terrifying and a much-needed wake-up call.
I think of this often,
I have a sister on DIS, who has always bad choices, and one of my siblings is, in fact, the one providing sis with a place to live by subsidizing it.
I know a person whose sister has always made bad choices and I think she is now on disability, her parents bought her a house and later remodeled it, what will happen to her when the parents die?
I have a friend who has a brother who has always made bad choices, Mom died ten years ago, brother is still living in the Mom’s house (Dad died decades ago), none of the siblings want brother to show up at their house!
I know a family who has a DD actually developmentally delayed, the parents care for her, but what will happen when they die.
In that case, it’s a bit easier as the developmentally delayed DD has been that way all her life. The three who “make bad choices” all seemed normal and successful through high school, so they feel like adults whose bad choices have taken them down a rabbit hole, but is it mental illness?
They all make bad money choices, too, how does one help them without enabling that or wasting money.
It’s all so tough without a crystal ball… and there never is one. After 15 years looking out for family elders, one general thought is that it can help to do leg work in advance of a crisis. If your loved one isn’t in a care situation, it is good to do the research as to where would be best geographically and what the options are in the desired area. While places can change over time (including ownership), it is easier to check them out when not in a time sensitive situation. Look at all levels of care available, not just the likely entry point and observe a meal. You get a good feel for the social climate and staff norms at lunch. Pre-view on your own (often good to rule out the non-options) or take your elder. Some places have wait lists and will call as your desired setting has an opening; you often are not obligated to take the first available. Good to locate the quality home care organizations nearby, too, as well as be sure the paper work required to eventually have someone act on their behalf (PoA and health care proxies) are up to date and still make sense.
I couldn’t have safely tended either of my parents at home. Not the right layout and many other safety issues accompany memory loss, health decline and living to almost 93.The social piece at elder communities is a plus worth considering. Having seen it work out optimally for all of us, the frequent assumption that the best alternative is at home or with a family member was challenged. Many elders only familiarity with options is what was available for their parents 50 or 60 years ago. That would frighten anyone.
Also agree that us sandwich generation folks need to keep it very real as to what we can take on and still be human and honor the commitments we made to the families we created. I’ll call this the “no one is burning” clause after @SouthFloridaMom9’s post number 9323.
Another piece is how long aging loved ones will live. My friend took in her grandmother, as she was concerned that her mom was wearing herself out caring for the grandma. Everyone thought it would be a few weeks. Grandma rallied and it turned into many years, including 24/7 care towards the end. My friend had to hire help to come and watch grandma at night 2 nights/week so that she could get a full night’s sleep those two nights. It was very tough on my friend and her H. He had a heart attack during the last years of grandma’s life and I think the added stress of grandma living with them was just one more thing. Grandma died in the year she would have turned 103!
^ I don’t think of attaining age 100 or more as a great accomplishment anymore!!! My mom does the “why am I still here?” routine very often at age 80! Her mom said that in her early 70s.
I thought the social aspects of the rehab/nursing home would be good for my mom, but now she gets annoyed/angry and tearful whenever they put her in her room alone. (No current roommate.) She cries and wants out of there, but she must not remember it’s far quieter at our house. We are only here in the evenings and are usually worn out and not that talkative. On the other hand, even though there are activities there, it also has lots of long term residents who sit in the halls and look depressed a lot. It’s just not going to be a perky environment when so many residents are quite old, confined to wheelchairs, and have varying cognitive abilities.
It seems to be common on a birthday for elders to pretend it would be a great accomplishment to “live 10 more!” “I will see you at your 97th birthday!” Part of our problem with aging is that it is assumed the goal is to live as long as possible no matter what the consequences.
