I think this is one of the most important points. Having someone who can give you updates about not only your loved one but also about what type of care (or non-care) they are receiving is crucial. The staff changes, the shifts change–all those people as well meaning as they are only see a snapshot of the person they are caring for.
I personally wouldn’t sign up for a place that doesn’t allow outside personal help.
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I agree with the others. I’d check to see if your dad’s current place allows hospice as it sounds like that may be apprpriate with him sleeping more and his growing dependence. My mom was able to get hospice in skilled nursing and it was great not to have her move and get more disoriented. She got lots of visits from family where was was in skilled nursing hospice.
It’s unlikely that someone who can barely move and is sleeping more and more will last much longer. I’d check with the medical team. In any case, tax hits are a terrible reason to move anyone in their last years/days.
My sibs floated the idea of moving mom back to the house they had lived in for decades with one low paid aide who only speaks Chinese (which none of us kids speak, only one DIL). The advantage was that it would be cheap.
I vetoed the idea because the worker wouldn’t have worker’s comp and could get injured on the job and we’d be responsible. (Also mom needed much more than just one person and custodial care.)
I told them I couldn’t take the risk of all my assets being wiped out if the caregiver is hurt and needs care and that was a firm no. Mom also felt no connection to the house after moving to CCRC and living there several years.
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Thanks @deb922 ! I was proud of S. He was very very devoted to mom and it pained him to know she was being forced to endure PT sessions that weren’t helping her but only making her more exhausted and increasing her pain and discomfort. We sibs were not able to hold vigil and didn’t confront POA brother but my son was willing. He made his uncle be present when they changed mom’s fistula so he could hear her crying out in pain which we all found so unbearable. We were finally able to get the PT stopped and get mom some morphine. She had stage 4 cancer. It was pretty brutal and she needed 4 people to help her get changed.
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D has asked us to make S medical power of attorney as he can be more objective and dispassionate and make hard choices. D is too empathetic and doesn’t feel she can.
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We love our son. So very much but he has a lot of trouble making decisions. It’s so hard for him.
We’ve decided to let our daughter be our POA.
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We love both of our kids but we all recognize each has different strengths. I’m glad both agree that S is better for POA—definitely for medical and maybe legal as well. We shall see.
Just want to point out that it’s possible to have different people for POA (finances) vs Healthcare POA (medical decisions)
But I think different states have different conventions. I think that some states use term Healthcare Proxy form.
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Ds1 said that he didn’t feel strongly about having POA, and ds2 said that he wanted to do it, so ds2 “won.” I hope that we have lots of time to reconsider. I think the greater possibility is for us to move close to ds1 rather than ds2 so then it would make sense to change.
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This group has been active today! I will try to load all responses into one post — I apologize if I fail to tag anyone.
I agree that keeping them in their current situations is the best for safety and oversight. I’m too far down the line to effect change, unless I am there in person. SMom is the first in line to make decisions and my older brother is the next for Dad’s health (but the first for finances, as POA).
As of today, the two facilities are still talking about whether Dad can move from the hospital based rehab/skilled nursing floor to the Brookdale facility. The fact that it has taken a week makes me think this isn’t a slam dunk.
I was informed that hospice did a review today, but their report is not yet available. I don’t understand how hospice helps at EAL. (How much time would they cover? How does this assist the EAL staff?) I’ll try to call Brookdale tomorrow to see if anyone will answer my questions.
When I googled the name of the private pay aide, I found that he has a sex offense with a minor (likely same sex). He is not in the sex offenders registry for either local county so I don’t know if the charges were dropped. I don’t know if this has any relationship to anything that may have happened at the facility where he is “banned.” He may be “banned” but he took SMom there last week for a tour!
On StepMom’s resources, if Dad passes first, she has a nice nest egg to pay the $6000/month at her current facility. The new facility would be $9000/month for her alone. She gets about $4k combined from pension and social security. Of course, it depends on how much gets spent before he passes.
Longevity: Dad is 97 and thus far has survived all of his siblings. SMom’s family has had siblings pass over 100.
@SosConcern you had good questions about what happens next. The EAL downplayed the idea he could need skilled nursing and rationalized Hospice would replace that need. SMom is advocating for Comfort Care (but I don’t know if everyone really understands what could happen in various situations).
@greenbutton I see the potential for zero upside to moving, as you do!
Thanks all!
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Avoid ‘comfort care’ - it is not what it sounds like! In some places it is stopping medications and essentially medical care. How they call it comfort IDK. I have been ‘deleted’ by saying what happened to father-in-law with comfort care (he was talked into it by Hospitalist, who said “you can make your own health care decisions can’t you”? - feeding his ego). Local BIL had cataract surgery that day, and DH drove the 12 hours to get there only to find out ‘comfort care’ had started.
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We used comfort care for my father who had Alzheimers and it did require stopping treatment and medication that would extend his life. However, it started medication that allowed him to be pain free and made his final months much better. I suppose it depends on the person’s medical needs and the hospice group in your area. End of life decisions are very personal and definitely vary according to the situation.
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My MIL has been in hospice care for three years. It was originally done so that the AL staff would not send her to the hospital. Hospice helps with showers, prescribing meds, getting a hospital bed (MIL could not climb into/out of a regular bed), etc. Not all hospices are created equal, and H’s family has switched hospice companies when they felt it was necessary. Overall, they feel that hospice is value-added, and it’s paid for through Medicare.
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Good reminder for me to do pre-research on Hospice care.
Does anybody have any experience with this kind of help for housebound seniors?
Also, hospices vary considerably. Some allow families/patients to retain their MD and some require you only use THEIR md. My friends ran into this. They said by patient’s symptoms it was obvious he had started a urinary tract infection but hospice doc said no fever, no abx—he refused to talk with family md. They had to fire that company and switch to company that allowed patient to have his family doc talk to hospice doc and confirm that patient had frequent infections w/o fever but needed abx.
Also some hospice services are better about bereavement counseling than others.
We only had skilled nursing and then hospice. Never tried any other types of care.
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This is meant to be light and somewhat funny but somewhat a vent!
My mil is driving me crazy. I get that she has very little going on in her life but she has a tendency to get fixated on certain things
One being my former sister in law. I get a call every time my mil talks to ex-sil. I get a call about any news that my mil gets about her former dil. My mil I feel is fixated on the youngest granddaughter.
My niece is having a baby. There’s going to be a shower, I get a call that there’s going to be one. I get a call about what my mil is going to buy my niece. I get a call that my mil sees that there’s going to be a pack n play at an estate sale. I get a call that my bil bought said pack n play. I get a call that the happy couple saw the pack n play and like it. I get a call that the invites are going to be going out soon. I get a call that my mil has received the invitation (at 8:45pm!), did I get mine? I can drive to the shower with her and my bil.
Interspersed into all of these calls are complaints and various news about my ex-sil. News about her parents, about where she’s traveling. News about her moving near her daughter. News about how that might affect my bil.
My bil has told his mom not to talk to him about his ex wife. I’ve told my mil that I don’t care to discuss his ex wife.
My husband says she just wants to talk. She wants to have a one sided conversation! Last night when she called at 8:45 pm, always on my cell, I gave the phone to my husband. She wants me to call when I get my invite.
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Sorry that was so long!
The other thing is that my daughter would love to be pregnant herself. She’s 7 years older than her cousin.
She needs to wait for her current course of cancer treatment to end and then she can try and have one of her embryos implanted. I’m going to be a nervous wreck the entire time she’s pregnant (if she able to get pregnant, daughter is nervous to even make an appointment). I’m already a nervous wreck, talking about my nieces very uneventful pregnancy is hard!
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As someone who really does not like to chat on the phone, I would get in the habit of NOT answering, lol, assuming that if there was a crisis she would call right back. Will she leave a voice mail? That could be a way for her to get out her chattiness and it could/would be VERY one-sided! 
I guess I would just not always be so accessible to a phone call. Or put your phone on “do not disturb” for hours at a time (you can set it up so certain people can still call through).
She must still be really angry/hurt/grieving what former SIL did to her son. I feel for you!
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I would just not answer. I only answer about 10% of the calls I get from my 93 yr old father. I know that any emergency would be a call from the nursing home, those I always answer.
If you start to answer less (let it go to voice mail), I think they will call less often.
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My mom has had a rapid short term memory decline over the last year. She’s only 75. She says she had no idea. There were some signs that we just attributed to aging, but we went to on a family vacation in May and she didn’t remember anything about it a month later. All imaging shows nothing wrong. She was on adhd meds for years but then stopped. She’s on them again with no improvement. My dad thinks it could be from 2 serious concussions in her life and decades of being on antidepressants.
She can still take care of herself, but will ask the same questions constantly. I’ll call her in the morning and later in the day she’ll complain to my dad that she hasn’t heard from me.
My mom has always been a difficult person and this isn’t helping. My dad says she just assumes she’ll live with me if he dies first and we both know that’s not happening. My dad is starting to look at their options and I am helping, but it is overwhelming.
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I’m so sorry about your mom’s issues. Loss of memory is so hard for everyone. My relationship with my mom is challenging, I try my best but sometimes it’s a lot.
Thanks for listening to my thoughts on my mil. She’s a nice person but I am not a person who likes to talk on the phone.
All this talk about pregnancy and showers makes me anxious about my own kid.
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