It’s not easy wherever they live. You either deal with every minute yourself, or try to deal with flurries of phone calls and visits and coordination of doctor/nurse/meds/instructions, etc. from some distance.
I feel for you @surfcity. “It is exhausting trying to talk “down” to my parents at their compromised cognitive levels.” I feel this intensely. I tell my mom to put her feet on the floor, feet on the floor, feet on the floor, stand up, stand up, stand up, raise yourself up, stand up, stand up, stand up… literally repeating each sentence fragment 50 or more times every morning to just get her out of her bed - and this can take up to an hour to accomplish. It continues on with every other direction I have to give her to get going for the day. I am insanely jealous of my siblings who get to breeze in for occasional visits and just have a cute little conversation with her. (She does still know who we all are.)
I’m sorry you have to deal with all this times two. I hope your mom’s rehab goes well.
“It’s not easy wherever they live. You either deal with every minute yourself, or try to deal with flurries of phone calls and visits and coordination of doctor/nurse/meds/instructions, etc. from some distance.”
I feel as if, right now, I am doing both- and that is why I keep telling my brothers it would be easier to live with my mother!
@psychmomma said “It’s not easy wherever they live. You either deal with every minute yourself, or try to deal with flurries of phone calls and visits and coordination of doctor/nurse/meds/instructions, etc. from some distance.”
Agreed. I am doing the former now and wish to have a few minutes to take care of me or run out or sleep in but I remember that running to facilities for the calls, coordinating from afar, hoping everyone is on the same page is difficult as well.
Yay, we have the infusion appointment scheduled for Tuesday. It will be a team effort to keep her healthy enough to get to and from the appointment, but it’s something. I’m the designated relative to go there with her, and will be there most of the week.
With 4 kids scattered across the country, she decided years ago to move to a CCRC in the town where we grew up, even though we’ve moved away. And it made sense at the time. But now that she needs more help it’s hard to have someone there continuously for weeks. Mostly the aides can help her out, but with these latest issues (weakness, depression, disorientation) we’ve had to travel more. Good news is she’s still around.
I’m en route to visit family since I didn’t travel there in December. Was supposed to go through Ohio first to go see my youngest sister, but have reversed my itinerary so I’m not in the blizzard.
Haven’t told my dad I’m coming south yet because he has started perseverating about the weather, safety, etc. He has called six times this week asking about the snow we had last weekend and i if we have enough food. He sent me home in September when the hurricane came through, even though he’s four hours inland.
There is no reasoning with him. We’re all still eight years old to him. And in fairness, that part is nothing new or attributable to aging.
psychmomma not getting break now except to sleep and have to deal with med errors, hospice nurses in a hurry, aides that don’t do anything etc.etc. I understand that I can drive away to sleep but for $8k/month she is getting meals and her bed made, that’s about it.
I frequently feel sorry for myself that both of my parents have severe dementia and I’m the only one available to make decisions. But more importantly, I am the only one who emotionally cares for my parents. But I am grateful after hearing your stories for the decision I made to move them from their CCRC and move to the memory care unit there, to the care home 1 mile from my house. Either DH or I stop by almost every day and typically, unless there is something “big” that happened, they don’t call me and typically let me know what is going on when I go by. I find this is so much easier than when they were 35 minutes away in the CCRC with strict institutional regulation dictating I get called to deal with whatever is going on.
That was so stressful and I feel for you primary caregivers whether you live with your elder or not. Hang in there, and I know you know to take care of yourselves. But how do we do this? I am fortunate that my parents are well off enough that I had and have options. I have “do not hospitalize” on their POLST form so I hope I won’t have to deal with rehab. However, anyone can fall and break a hip requiring such services for pain control if nothing else.
@GTalum I can definitely understand partially your position. With both parents now cognitively/memory impaired it is often sad to see them and not have my “old” parent available. I hate having to talk “down” to them. My dad is the smartest man I know and he and I used to have wonderful conversations about everything and I really miss being able to do that.
Being the only one is exhausting but I am aware that at least there is no sibling telling me I am doing things wrong or not bothering to give me a break. I’m looking for the silver lining here I think.
Do your parents recognize you? My folks don’t have dementia, and they think they are just fine. They don’t realize they are asking me the same question over and over or not making sense. It is heart-breaking at times. . .
@surfcity They “typically” don’t recognize me. Often though, they see me as a familiar person.
As to a sibling questioning or telling me what to do, I would find this difficult. When I told my SIL (late brother’s wife) that I was “admitting” (community based) mom to hospice, it was met with a negative response. That was hurtful. But it would be so much more if it was my brother. I know a may ignore her. BTW, she hasn’t visited in 1 1/2 years. But her daughter is visiting in February. She has also not visited in a while but has been supportive of my efforts.
I wonder how your are differentiating cognitive decline and dementia? It is the same continuum.
@GTalum I admit I am not as conversant in those terms as I should be. Dad had a traumatic brain injury, which left him with short term memory problems and some problems modulating his emotions. All very typical TBI side effects, according to all the literature I’ve been given. He is able to converse about events prior to his TBI at a very high level.
Mom was starting to slip a little, cognitively. She would forget that I told her she had a doctor appointment tomorrow, or she would tell me the same story twice, but she was in charge of making sure dad went to the nurse before meals (for his blood sugar checks) and would arrange for them to go to carious activities at their ALF.
After her stroke a week ago, she does not remember where she is, she does not know where dad is (thinks he is on another floor) and does not seem to remember their ALF when I mention various staff or residents by name that she used to know well. She cannot remember if she has eaten or done PT that day when I visit her. I am having trouble picturing their life together = the ALF staff can certainly cue them for meals and activities, but will they both sit on the sofa saying “what do we do next?” Mom would always correct dad if he started to put his pajamas on after breakfast etc. but she does not appear to be able to do things like that now. Hoping cognitive function comes back after therapy.
@surfcity I think it’s just a discussion of semantics. I think medical professionals may refer to your dad as having dementia due to a TBI. Your mother, depending on her recovery, may be considered having vascular dementia. Fingers crossed for a robust recovery. But I think it is too soon to judge where she will end up.
@GTalum, I often think about your burdens with your parents. During the last four years of my dad’s and stepmother’s lives, I felt so alone. I had one brother who was estranged from them (dumping them off on me after he had a fight with them) and another who was a burden as well, who died a year after my dad. I often think about the sudden death of your brother several years ago before your parents’ precipitous decline and how hard it must have been to deal with that loss, as I know he was a collaborator and sounding board about your parents’ care. And I know that your sister-in-law has not been easy to deal with.
As a single mom with a kid in high school (dad died the day after daughter and I made a quick trip for accepted students day at the college she wound up attending), and with the extra burden of managing the care of my stepmother, whose son far far away was not helpful, not at all, I was really overwhelmed by their continuing decline, which I can see in retrospect. I am so glad that I found an amazing therapist a year and a half before he died, who made such a difference for me. And this thread was a great support to me as well.
My daughter, who had her own trauma during high school, definitely noticed. She’s almost 23, working as a nurses’ aide in a hospital near her alma mater, took the MCAT yesterday, and told me recently that she will never put me in a nursing home (after some experiences with patients at work). I told her that never is too long a time to predict. It took until she graduated from college (the next day! amazing!) for her to emerge as a caring young adult planning a career in primary care, as a DO if she gets in and as a PA if not. She has told me that she really appreciates what it took to take care of her Grandpa (with whom she had a very special relationship from the day they met after I adopted her at age 23 months) and she intends to do the same for me. I will do whatever I can (within my limited financial means, alas) to ease her burden because she’ll be alone with it just as am. I do hope that by the time it gets hard, she has a supportive partner in her life.
(((((hugs)))))) to all of you carrying this burden.
It’s interesting because after trying to help care for my parents, dh and I have vowed that we would never want DD (also an only child) to care for us. We’re planning on moving to a tiered living community we one of us starts to need help. I want her to be my daughter, not my nurse or caregiver.
@momofsenior1, unfortunately my financial situation precludes a tiered living community. My daughter and I agree that I will move to the area where she lives when she has a solid career path. And as many posters here have shown us, no matter how good a plan someone makes, a caring adult child is usually called to help at one point or another.
I adopted my daughter from China and sent her to a Chinatown (NYC) day care center when she was 3.5. A couple of the grandmas of other kids there made a point of telling me that my daughter would take care of me when I got old. I wanted to say, no! no! never! my life mission is to take care of her! And of course I don’t want to be a burden on her and if I am, I would like to postpone it as long as possible. But life happens.
Yes, life does happen @oldmom4896, usually when we are busy making other plans
And believe me, we realize that we are very fortunate to be able to afford the tiered option.
My mom is in a memory care unit now with stage 7 ALZ. She was home until last year. Every woman in my family for generations has ended up having dementia. I’m trying to prepare as well as possible for that happening to me. My fear is that my DD will be in the situation I was where we were still actively trying to parent children, while dealing with our parents’ major medical issues. (Hopefully nothing happens even sooner!)
Super hard to prioritize and be all things to everyone :(.
I would hope not to put my sons through what I’ve gone through with my mother. I try to take better care of my health than she did. We have more financial resources than she did, altho her money lasted longer than I expected. Having 2 kids in elementary school at the same time I had to handle her care issues was extremely stressful and I wouldn’t want my kids to face that. Having said all that, who knows what the future holds. Women on my mother’s side tend to live into their 90s, altho rarely without medical challenges.
I agree with you @momofsenior1 especially since my parents had me fairly young and I had my kids later. This means they will need to care for me at a younger age. Both my parents have Alzheimer’s as do my only aunt and uncle. Therefore, I just bought long term care insurance with a lifetime benefit (pricey but I have peace of mind). I am also considering a tiered living situation though a little skeptical as it did not work out for my parents as I hoped. But my kids will still need to be called on for many things that don’t involve paying the bill (though I find the financial POA a bit daunting) or direct care giving.
No doubt our daughter will be burdened with our care in some form or other. There is no getting away from that. I just hope to make that as least stressful I can. I HATE that she won’t have a sibling to lessen the load and just hope that she’ll fine a supportive partner one day. I just don’t want her to feel any guilt about any decision she has to make.
I hope no one ever, especially my children, have to go thru what I have gone through caring for my folks. They have saved enough and got a small insurance settlement from the person who caused dad’s TBI, but despite being in first a tiered care place and now an ALF, I have had to take on an enormous burden.
I attend to all their financial matters, do laundry, and the them on errands and to doctor appointments. The ALF does have a driver but I need to be there for doctor appointments to give and receive information.
This week, with my mom in the hospital, my dad goes off the rails. He calls me now 5-6 times a day, crying, angry, suspicious, confused. Even with nurses on site and a hired caregiver, this has taken over my life.
Today I finally asked my husband to go as I am emotionally depleted. My folks would be mortified if they could understand the toll this has taken on me.
So make all the plans you can, but know that at some point, and adult child may have to do a little or a lot.
