I did not want to take the ‘caring for aging parents’ thread on a tangent, so I started this thread. My parents have had a number of health crises, 3 years ago and then 2 months ago. I ended up spending 50% of my time managing health care and related living concerns for them over the past 2 months.
I am happy to do this. They raised me, we have a pretty good relationship and IMHO, in my situation, it’s the right thing to do.
I ended up contracting the flu (the real flu) in March and was bed ridden for almost 2 weeks. Probably caught it being in a hospital environment or skilled nursing facility for days on end. Things got even more behind with my folks and at work.
Throughout this I have tried to be realistic. My husband and daughter picked up a lot of slack at home and things definitely got dropped if they were not essential (some housecleaning, bare minimum of laundry etc) I went to half time at work and I was only working 25/hours a week already. I did not really see friends much because my schedule was unpredictable.
My friends/family have been united in telling me that I need to make sure “You take care of yourself.” Which I agree with in theory. But how does one do this? It seems to be there are some things I just can’t off load to others. My husband has been fabulous, but I have been the one communicating with all the doctors, nurses, CCRC staff and all the details are in my head and notebook. When I was sick, he did make a lot of calls for me but things took twice as long because he did not have all the info at his finger tips.
I now have to move my parents which will involve packing up some of their stuff, donating some, trashing some etc. I can’t really ask the social workers to make those decisions, and I need to involve my mom in some of the decisions (what clothes does she want to take etc)
I guess I am not really looking for specific advice for myself, but more venting and asking other caregivers if they have truly been able to “take care of themselves” during crises. It is my MO to just dig in and deal with it and work 110% until they are moved and (hopefully!) things settle down. My version of taking care of myself is that I will try to grab a meal with friends when the opportunity presents itself. I plan to spend a weekend at my son’s college graduation and will be fully immersed in that (providing no one has to go to the ER etc!). And hopefully in a few months I can sit back and try to catch up on things at home and at work. Any other way through this? Other experiences to share?
This is so important. I have not (yet) been in this situation. But a friend who was very busy for five years taking care of her father neglected to keep up with her own health. She didn’t go for a mammogram during all those years of intensively looking after her father. After he died, she began her catch-up health care. She had breast cancer. It would have been caught a lot earlier if she had continued with her own health care routine.
I think we have to enlist others to relieve us from time to time and to help keep us on track. Ask a good friend or a spouse to check in with you.
If spending lots of time in hospitals, verify that all vaccines are up to date. Perhaps also consider any others that may be recommended for health care workers
@surfcity, can you or your parents afford to hire help for some of this? My neighbor, a doctor, has hired a senior care coordinator to handle some of the issues with her mom. Kind of a combination executive assistant and social worker, but at $250/hour. When my mom moved, we hired a Senior Mover company to help her figure out what moved and what stayed. They packed her stuff, moved it, and unpacked it. Priceless. But not free.
I have 3 sisters to share the chores with, and that helps. None of us is in the same city as each other or our mom, which complicates things a little. If you are the only one doing this, there is less coordination, but no one to hand off the work to that will do it for free, so that makes it harder.
My advice is to outsource everything you can, so that to the extent possible you can be the daughter (and wife and mother) and someone else can be the social worker and driver and cleaner and mover.
edited to add: This goes for your own home, too. Hire a cleaning/lawn/laundry/meal service for a while. Do the things that recharge you, and outsource the rest.
My dad bitterly complained about having a $15/hr home health aide come in for my mom while he was having a knee replacement. Absolutely no way he’d ever agree to outsourcing. My sister, who is local, is not in a position to pay for outsourcing, either. None of my other sibs can help financially, either.
I’ve repeatedly told my BIL (DH’s brother) that if he needs me to come supervise his dad from time to time, I can do so. His dad is mostly homebound (lives in an apt a block away from BIL), but sufficiently independent in the apartment that it hasn’t come up yet. BIL and family are overseas this week and he said his dad would be fine. DH won’t touch the situation with a ten-foot pole.
My SIL (spouse of said BIL) has her dad living with them. He’s descending into dementia and is getting really nasty. I’ve told BIL about the parent threads here and that they are not alone in this. The dad refuses to go into AL (he is physically just fine) and refuses to spend $$. I worry about that situation a LOT.
@CountingDown , if a senior has 1) dementia and 2) money, I’m all for using POA or guardianship to spend the money on their care. I understand the issue of seniors not wanting to spend, but in the spirit of saving yourself first, that’s the way to go. In cases where there is no money for care, it does get much much harder.
With the benefit of hindsight, I wish I’d taken better care of myself when I became the primary caregiver. I did hire help with household chores, the yard, etc. but should have also hired nursing/home care help even if it meant paying out of pocket and even when the patient did not want outsiders around.
Seeking medical care for myself much sooner would have been smart, too. Pay attention to your own pain and fatigue.
If you have PoA or are on a joint checking account, use some of the funds to pay for help if there are any available. When my dad’s Alzheimer’s progressed he did not want to part with a dime as his memories of the great depression were more real to him than the present. I had to override him and threaten the sibling who had PoA with legal action for elder abuse/neglect if our parents were not provided better care.
One of my adult children needed long term nursing care and didn’t want anyone but family around. That nearly broke me - physically and emotionally. When was dh here, and I wasn’t too exhausted to drive safely, I’d take 45 minutes to grab a bite as I sat in the car under some trees and just watched the birds. That was better for me than taking a soak because at home I could still here the IV alarm go off or some other sound of a minor crisis.
Hugs to you, surfcity.
I hear you. The “take care of yourself” in my case was taking some “in between time” for my own deep breaths despite the needs of my loved one. It’s hard to be “on call 24/7”. It ain’t happening without you losing patience. And then nobody benefits.
And I finally realized that the main reason I had trouble taking care of myself was because I CARED SO MUCH for my loved one. Beck and call doesn’t work. When that finally dawned on me-- that it was BETTER to slow down, make a reasonable routine that could fit things in whether that was first choice of my loved one or no–it was better.
@MomofJandL I have heard of senior managers but never really thought about them. I am sure they are a godsend for children who live far from their parents. I am only an hour away so I can be there for a day. (I am moving them to my town so that I will no longer have that drive to make every time there is laundry to be done etc) But there may be things they can help with that I haven’t thought of.
Mom and Dad have both said repeatedly that they don’t want my life upended by this, and so I do try to minimize how much they are aware of things I am doing.
I am all for using resources when you have them. Mom and Dad do have some funds although Dad can no longer get a lot of numbers after his brain injury, so I don’t always tell him the correct numbers. I am convinced they can afford a few years in this personal care facility. I had to hire aides for mom after her hospitalization and the CCRC provides them. Of course I have to make the call to set them up initially and check in once a week for reports and so forth.
I have resigned myself to having to pay for packing and moving help - there is just no other way.
I have also resigned myself to out sourcing a LOT of meals at home. Quite frankly my husband is trying to lose weight and he is happy to make his own meals that help on that goal. Often I send my daughter out to pick up salads or we stop at Panera etc. I enjoy cooking and it took me a while to get over the fact that I was not preparing meals and I was likely spending more $$ on take out but it is what it is.
I also have to give myself a little slack. This was the spring that we had planned to do a once over of our garden beds (DS is graduating and we may have a gathering to celebrate. Isn’t that always when you plan to do stuff to the house?) It’s clear that DH and I will not have the time to physically do it but now we haven’t even had time to call a landscaper to come out and look at the mulching etc. That’s the kind of thing I need to let go of.
Even moving them to a PC community near me was a tough decision. I know intellectually it makes sense to have them closer as they are only going to get more medically needy. Experienced friends said I should move them where it made my life easier and while I agree it also at times felt a bit selfish. But it has to be done. Mom is on board although she doesn’t want to move. But she doesn’t want to be more of a burden to me either.
Sometimes (ok, maybe a lot of the time) you have to make difficult decisions and then insist on them.
One example - my in-laws wanted their sons to come every night (one son each night) to help with getting dad to bed. The problem was the timing of when the wanted this help . It was very late in the evening and the sons had to get up early for work. After a week of this, they realized that this was simply not a sustainable option. So, they insisted that they could only do this if dad was put to bed earlier in the evening. The parents didn’t want to pay for help so they agreed. This went on for a few weeks, but the sons came to realize that this was really a huge time commitment for them and also not a sustainable long term option. So, they both agreed and told the parents - you need to hire a helper. Now, the parents had the money; they just didn’t want to spend it. Turned out they got a really great caregiver and it was a good arrangement for everyone.
So, sometimes you just have to say no to your parents.
That said, when there is no money for additional help, I suspect that there are few acceptable options and the children will get caregiver burnout.
My mother in law refused to take any time for herself while caring her husband during his long decline. When he died, her health was in shambles. It was hard for us to watch but she refused to take any breaks herself.
Also, consider a caregiver support group if there is one in your community. My support group is the thread at the top of this page, but some people really do benefit from in-person support.
I’m struggling with this from time to time. My mom lives with me and has dementia. It’s been four years and it’s very draining. Until recently, I’ve had the option of leaving her with my H for a few days each year. That time away has been a godsend. Now her care is more intensive and he can’t do those tasks so I’ll have to take my breaks as an hour here or there. I have definitely neglected my own health and need to find better balance going forward.
My dad took care of my mom when she was ill, but he completely fell apart when she passed away. I had to take care of both mom’s affairs and my dad, from 1000 mi away. I cannot speak highly enough about the benefits of a good geriatric case manager. Dad would not move, and my brother would not help (even though he lives closer). We had a caregiver in the home and a case manager. Trying to work full time, deal with everything with both my mom’s affairs after she died and my dad’s collapse while working full time and taking care of the family (the kids were still at home) was not easy. DH was great, but there were things he could not do. Having to deal with moms affairs and dad’s many issues long distance was extremely difficult. The first geriatric case manager I found was fabulous. We became friends. ut sadly she got sick and passed away. The second case manager was sweet, but not of the same caliber as the first. In fact, when my dad died (I cared/coordinated care for him long distance for 7 years) the case manager leaned on me for help with issues in her own life.
It was not without challenges, but I could not have managed this for 7 years without a geriatric case manager. It was not cheap (hourly rate was not as high as mentioned above, but it wasnt cheap) and the last few years we did use dad’s long term care insurance (should have started sooner, but oh well…)
I dont have any magic words for how to take care of yourself. You just do what you have to do for your parents, your family and yourself. Hang in there. Been there, done that…
Reading the above posts, my thoughts are tumbling, so many things to say!
You mentioned planned projects, we had begun getting new carpeting and done one area, two years ago, then the in laws went into crisis and I am just now getting back to that and other projects. I totally get how frustrating that is, and sadly, I was able to put it aside for later, but others in my family kept asking when those projects would be done!
As some of my CCer friends will attest, I did more than anyone else in the family and it was too much. My in laws were miserable people and they made DH miserable and all our lives the pattern was that it was easier for me to just do what had to be done than to have him do it and try to support him from afar! They were nicer to me than to him. But after too much time in their city and too many trips down to do whatever had to be done and too many phone calls (like too many each day!) I finally hit my wall and said, “no more trips, I’m done.” We had plane tickets already purchased for what would be my last visit, it turned out to be our last visit as he died a few weeks later, but it felt good knowing I was not going to go again. They asked too much, they demanded too much. Part of the issue, in hindsight, was that we did not realize just how bad his short term memory was, 20+ calls in a day were because he did not know he was calling, not just because he was an a$$.
It is most helpful to have some one to share the load, be that the stuff that has to be done, or just to listen and let you vent.
My mom has been living with us for many years and though the plan was to have her stay home while we traveled now & again for a break, it turned out she is scared to be home alone and we have rarely gotten time not with her. It’s crazy how unable to help anyone is and sheesh, $125-$300 a night for someone to just sleep over, she does all her own ADLs, just needs company. By the time the in laws died, I was so very maxxed out that I had zero compassion for my own mom & we recently got a break away from her and it was glorious, I am so much more able to be kind in the face of her neediness now. We must take breaks from the person who needs care!!!
I think you will find a PC setting in your community easier with a more integrated life. But, you will need to still "protect " yourself by planning how much time you can devote to your parents. Between DH and myself, we have planned to visit one day a week (alternating weeks) and we will both visit on the weekend. While there, we try to anticipate what is needed and I try not to respond to addled and alarming phone calls and realize they are in a CCRC that can respond to a crisis. Any needs beyond what DH and I have figured out we can handle, we will hire someone. For something like laundry, I know it can easily be outsourced for a few extra dollars to the cleaning service.
In my schedule, which is not negotiable, is exercise. This is not usually a problem since I swim with a master’s team in the morning, which also helps me socialize a bit, but I need to reserve evenings for winding down by 8p or so since I am up at 4:30. I have recently learned to make that non-negotiable. DH cooks, but food is often vegetables and hummus. Would a meal service such as Blue Apron make sense for you? Fresh food delivered to your door? Maybe just for a month or 2 until you get past graduation stuff?
Do you have family that can help with the move? As many people as possible is necessary to distract the parent while others throw stuff away or bring to Goodwill.
My friend works as a case manager/guardian ad litem. She ran rehab units for years and is a gem at being firm but warm. Her fee is certainly not $250/hr. She manages caretakers, bills, medical appointments, selling cars or condos, placements.
It was much easier for me to care for my parents because I was local. It was still a juggling act. For example, I’d work on Sunday to have time for Monday doctors appointment/surgery. I made many short visits, like to drop off dinner. I didn’t neglect my health but there was little free time. I dropped weight. It was easier the last 7 months, when he was in an ALF. On top of the physical and emotional aspects, I had to settle my mom’s estate and prepare for dad’s.
It’s hard to not build up,resentment if there are siblings and they don’t pitch in, or minimize the amount of work.