I am pretty good about letting go of my own things that may still be in good condition but no longer “spark joy” etc. I do believe in letting someone else benefit from them and I do feel less anxiety when there is less clutter.
It is weird to do it while they are still here and unaware. When we sold the house, I had to donate a LOT of stuff and it was really difficult watching my mom leave the house knowing all that stuff had to go. So this time will be easier on me emotionally for sure, I just feel funny that they aren’t aware of it.
This really makes me think about how I want things for my kids. To be sure, my parents were pack rats and disorganized their whole life, and my mom has an almost obsession with not wasting things. I am more practical and will not save, say, the disposable plastic liner in a small plant. Which I threw out today despite her urging me to wash and “save it - it is still good!”
I donated my mother’s clothing and shoes to a thrift shop. Other than that, I am “fortunate” in that my mother lived in an apartment connected to my house, so it remains just like it was the day she left it. She was the opposite of a hoarder or even a collector, so there is none of that. She gave a lot of things to my brother, who cared nothing about them and I would have cherished them, but it is what it is. I don’t know what happened to them, because when he was diagnosed with Alzheimer’s and needed to be moved closer to his daughter, none of that was in his house that I know of. His daughter and I are close; she would have told me if she found anything.
@compmom, I wish you well with the care of your mother. I know that nobody in my mother’s memory care unit would have touched a colostomy bag.
I was fortunate when I had to move my mother from AL to a nursing home that the SW at the AL put me in touch with a Hispanic charity that would take any furniture, clothing, household items, etc., regardless of condition. With everything else going on, it was a refief not to have to contact multiple businesses and schedule multiple appointments to empty her apartment.
My five siblings and I were caring for my mother last year on a shift schedule. I had 7:00 a.m. to 7:00 p.m. She was undoubtedly sleep deprived when we were children which can never be repaid. She passed away in September from undiagnosed metastatic cancer. I was so glad that I went out everyday to care for her. Primarily, Mom wanted company and someone to be there for her. Like many elderly, she was fearful of being a burden. One of my sister’s is an RN which made it easier to consult on the way home. Also, two siblings lived on the same block. I traveled from Chicago each day to be with her. She only spent one week in a hospital in the end.
I used to make toast and cut it into small bite sizes with different spreads. Also, if you can make an egg (over easy), this is easy to cut up and digest. It is a great source of protein and vitamins. Keep serving sizes small, so she is not overwhelmed. I also ate at the same time, so Mom had someone to eat with. I think I gained 5 pounds.
@michele4 - I’m very sorry for your loss. We did shifts like that with my MIL when she was dying of cancer and also with my grandmother when she was actively dying.
My mom has been ill with ALZ going on 10 years. It is not the same.
So far we are making the colostomy work at the AL. I stayed 48 hours and have been available may hours to show aides how to do it. I gave staff a choice between the pouches that open at the bottom and the disposable ones. I set up a log so we can establish a pattern and reduce workload for staff. There has been one overnight rupture (which I was there for and cleaned up" and today the seal at the bottom came undone and so the contents went down the inside of the pants, which I also cleaned and laundered. I also do the skilled nursing part: putting the “wafer” on to which the pouch attaches. I am not feeling totally safe and have found one nursing home and two apartments with elevator that could be Plan B’s. Finger crossed. Her memory is gone and she is lost and scared-another reason to spend a lot of time there. My brother is pitching in some too. I am posting so others reading this can know that it MIGHT work with colostomy and dementia at AL. Will update if it doesn’t!
@compmom- you are amazing. Great to see what happens when you optimize current situation; also peace of mind to have back up plans. Hope you get some nights off.
My mom’s CCRC has a resale shop, but she has made us promise we won’t donate her stuff to it, so we won’t. Some will eventually go to my church’s rummage sale, some will go to Goodwill. But she is a pitcher not a keeper, so there really isn’t a lot. Some things we will keep. I think we have 30 days after she moves out of her apartment to clean it out, so we’ll have to decide a lot fast, but people do these things so I guess we can.
It’s interesting to go to the resale shop, it opens one day every other week. Some of the CCRC staff, the aides of the residents, and a few people from the community show up on a regular basis. Some really nice stuff, and some head-scratchers.
I’m having a minor pity party over here. We’ve all been sick for almost a month, including me, my mom, and my H. I’m so exhausted from taking care of myself as well as my mom - it really brings home the point that if we as caregivers don’t do it, nobody will do it.
It made me think about calling the local nursing homes to see if anyone would take an emergency placement. Luckily I haven’t been sick in 5 or 6 years, but if I needed to go to the hospital (which I considered this time), I don’t know what I would do with my mom.
Then, I suddenly had bad tooth pain a few days ago, so had an emergency visit to the dentist, resulting in several extractions (another story), so once again, I am exhausted and trying to control pain (which I can do with meds thank goodness), while also taking care of mom.
I’m so happy I had a nice vacation at the beginning of March! I’ve been looking at all the photos from our trip, and boosting my spirits, and will try to remember to be really really thankful when I finally feel normal again!
psychomomma so you live with your mom and don’t have any help? Your post was a view of a reality that is very helpful to others but I am sorry for your situation and hope you feel better. Around here there are respite stays available at nursing homes and assisted livings. I wonder if you could do that and take a nice relaxing vacation!
Agree—in HI, there are also places where folks can have a loved one stay for some days for respite as well. Having a respite may help you fully heal sooner. Good luck!
Despite the threatening attitude of administrators, the wonderful aides at my mother’s assisted living have been coming up to me to tell me that the colostomy is no problem for them and no need to send her to a nursing home. They are so happy to tell me this. I am so touched. I wrote them a thank you note. I finally feel like we have a team. How ironic that the colostomy has meant more visits into my mother’s room, more contact, and more acceptance of help. I don’t believe in fairy tales but right now, things are good. Hope this saga helps someone else!
That’s really good news, @compmom! I’m so relieved for you that the aides are being so helpful.
Re: my prior post, I did use a local nursing home for respite for my vacation in early March. At $250 a day, it is not something I can do very often, and for my mom to stay there it requires a doctor visit and letter saying she is up to date on shots and the doc approves of the stay.
The help I have is a spouse who can occasionally stay with my mom when she’s sleeping so I can get groceries, etc. In that respect, I’m much better off than many others who truly are doing it all alone. But once your loved one is fully incontinent, the only help would be someone I could find and pay.
@psychmomma - what do people do who cannot be there the way you are? That is partly a rhetorical question. And something I ask myself daily. What do people do who need to work a 9-5 job every day to put food on the table and cannot just run to the elder when there is an issue? Plus I know I am enormously lucky that my parents scrimped and saved so they have money to pay for an ALF.
I really don’t know what happens to people who don’t have time or resources. I know there are some state facilities but they have waiting lists and I hear varying things about their condition.
Plenty of people retire early and take very reduced amounts of social security for the rest of their lives as a result. And some have to hold their noses and put their parents into awful facilities. Here in NY, Medicaid will pay for aides–just logical since the most awful nursing home costs a ton more than aides.
In our state also, those on Medicaid/Medicare can get an aide for 4 hours/day. Someone to give a bath and help with their meals. You can also enter a facility as self-pay, spend down your resources and be converted to a Medicaid bed. The director of my parent’s care home wants to have a Medicaid bed but tells me for the amount they pay, she would have to open 6 homes to afford one Medicaid bed. This is why I am currently buying into life-time long term care insurance. With my family history of dementia, I can’t ignore the genetics.
@psychmomma is it possible to hire an aide for part of the day for partial respite? Agencies in my state we had good look with, and are national organization, are Home Instead and Carewatch. We have been able to hire for a number of hours on a limited basis. Of course, I’m sure we had this discussion a couple of years back.
I’m offering this just as counterpoint. Perhaps, because my mother died almost 3 years ago.
So many here are exhausted, including emotionally and mentally. We don’t have the benefit of being med professionals so we don’t “know” the procedures, signs, fixes. In some cases, even learning what we can do is about googling, trying, plus the tasks and uncertainty of getting staff to do x and y. Please give yourself credit for trying, but understand you can’t do it all. You can’t go days without proper rest, care for yourself, and the support.
Cleaning out her storage, I was a wreck. She’d been a hoarder. Though I’d done 90% 3 years ago, this was stuff I couldn’t decide on then or carry back on a plane (silver, crystal, valuable books and art. Mixed with junk.) A friend came, we drove, were crisply efficient. But on the way home, I fell and hurt my back. Now I can’t lift, doubt I’ll get it all out of my car soon.
It shows me how we’re one misstep or illness away from a total halt.
Right now, we’re talking about our elders “in place,” at home or in AL, IL, SNF, but needing significant oversight. Earlier we talked about elders still at least a bit functional. Please get help where and when you can. Please remember your own needs. Please know you can crash.
I know it’s hard to think about. But we can’t achieve perfection. You’re balancing multiple priorities.
The posts here are heartbreaking - but also inspiring. You guys are all amazing children who are doing your very best for your parents. Hugs to every single one of you. I’m filled with admiration.
I need help with a situation. My loved one has been having incontinence overnight and the doctor has added and subtracted meds to treat that but some of those meds have also made vascular dementia symptoms worse. Anyone know of a good incontinence medicine without cognitive side effects? How did you all deal with the declining ability of your family member to control bodily functions? Any tips or insight?
