Caregivers and Stress

[Kelt]

Originally Posted by easygoingfemme

Kelt, hoping you get results from the tissue sample very quickly and that the results are not worrisome...

It's good news, the cancer has not returned. The infection is a weird one and quite large, but we are treating it aggressively with antibiotics (which I hate but are sometimes what you have to do..), topical steroids, and probiotics that will continue for three weeks after the antibiotics so that we can help her system rebuild when this is hopefully past. Thank you for keeping in touch on this .

Originally Posted by Kelt

On a side note: I posted some time ago an article about the cost involved in "the last five years" of the three primary ways people go, cancer, heart or dementia/AZ and the ranges given were $200-$300k for the five years. As I look at my mothers actual expenses now with fairly low needs I think those numbers are wrong, it must discount housing or something because she's about $50k per year after taxes now ($250k for 5yr) and it will only go up from there. The place where I have her is within a couple hundred bucks a month of the other places so it isn't much out of line with "average" independent living + six hours a week of personal care. By contrast, when my father was dying that last month when he was under hospice the SNF charged $10k for the one month room and board and that didn't include supplies or medical. I guess that's just to say the numbers used by planners might not pass the reality test.

I wanted to come back in on this since I came across something new to me and I learn everyday how much all of this costs.

I was looking at a "Long term healthcare cost calculator" on the Lincoln Financial site since mom has an annuity there and I am sort of looking at whether or not I should do a long term policy or annuity for myself. It was interesting that instead of using the $200-$300k figures for 5 years used by financial planners, their tool uses $91,250k per year with anticipated inflation of 2.9% per year. That is just the default starting point, the calculator has sliders to change the basic variables to test different scenarios. I'm sure other companies have similar tools. Granted this is a type of company that sells large and complicated insurance products it would be in their interest to use higher numbers to sell bigger plans.

However, it seems like maybe they are closer to the truth, and maybe under still, to what I'm seeing with my friends and myself dealing with this.

Food for thought...

[Kelt]

Pretty sure mom has "Sundowners" I'm learning about it.

She had her second middle-of-the-night stroll last night after being the only one who heard a fire alarm, same as last time. At least this time she grabbed her purse and didn't get locked out.

She also cancelled her driver to the dentist today because her primary nurse called her this morning to say he would take her. He's in El Salvador this week.

I spoke with her back-up nurse who has lots of dementia experience and told her I thought mom was having "auditory hallucinations" and a couple of other things. She said she thought it was this sundowners condition. In reading through some of the symptoms, I'm glad she's only having the more benign ones for now.

[easygoingfemme]

Originally Posted by Kelt

Pretty sure mom has "Sundowners" I'm learning about it.

She had her second middle-of-the-night stroll last night after being the only one who heard a fire alarm, same as last time. At least this time she grabbed her purse and didn't get locked out.

She also cancelled her driver to the dentist today because her primary nurse called her this morning to say he would take her. He's in El Salvador this week.

I spoke with her back-up nurse who has lots of dementia experience and told her I thought mom was having "auditory hallucinations" and a couple of other things. She said she thought it was this sundowners condition. In reading through some of the symptoms, I'm glad she's only having the more benign ones for now.

My grandmother had sundowners syndrome and it was really rough as time went on. She "ran away" a lot at night and imagined a lot of horrible things were happening in her house and out in the world. Once she was in assisted living she had a security alarm on her wrist to alert staff if she tried to break out at night. I do know that, when it was first developing, we found she improved when she started getting injections of vitamin B12. The summer months also help as it really is impacted by darkness. Winters get rough with sundowners. I'm sorry this is being added to her care needs.

[Martina]

My mom has 24/7 HHA's and long-term insurance which covers about a fifth of the cost. The rest comes from savings. I have lung issues and arthritis. I cook and do the finances and arrange everything, take her to treatment, and so on. It really takes two to take care of her, and as I am an only child, the second person is someone we have to pay. If she goes into a facility, long term insurance will pay more, and with her income, I imagine she would be fine. It's not likely though. If she goes downhill (god forbid), it probably won't be long because she has a kind of cancer that when it grows, it grows fast. It's glioblastoma. What Beau Biden had.

She just got out of the hospital. Stroke, they think, but they are not sure. At least it wasn't tumor growth.

[MsTinkerbelly]

For the years we cared for my mother it was the worst stress I can ever remember going through, and I had help!

My spouse stepped up and changed her life to work from home...she was there doing all the bathing and wiping during the day while I went out to work, and I had the nights including all trips to dialysis. I had to take a lot of time off work to take her to doctor appointments, but fortunately in California my employer had to let me!

While we had a lot to handle, I really felt blessed to have had that time with mom. I will always be grateful that I had such a wonderful love to help get us through it.

My thoughts go out to all of you struggling to find ways to care for your loved ones.

[Martina]

I am so so sick of unsolicited advice especially from "friends" of my mom's who have not offered or given any help. (Silent scream)

[flapdoodle]

9 years ago, I uprooted my life, rented out my house to move back to NY to care for my Mother.
This lasted years.
I had lost so much weight from stress, I was weak, tired, exhausted in every way.
I was moms legs ..eyes, everything. After a broken hip and other walking issues, Mom was recliner bound, unable to even get up & get into bed, but, sharp as a tack. My heart hurt watching my Mother suffer in a body that was no longer hers.

My wife and I lost our moms 4 months apart. I can wake up every day knowing I did my very best. I deal constantly with the "if I was this ..or had I done that would mom still be here", I learned I had done all I could and no matter what more i did or didn't do, the guilt of not being enough would always loom.

She became my best friend, confidant, buddy, full time job, and my child, while always being my Mom. She died in my arms, while I was wetting her lips, she smiled and drifted off knowing she was safe.

She once called me her life line.
I wish she would call me right now.

You are all amazing for what you are doing. It's the most important job you will ever have.