When I was actively caregiving, my father would tell anyone who would listen that I wasn’t helping out and did nothing for them. The “behind the scenes” stuff didn’t count in his mind. My mom’s in memory care now and because of job transfer, we’re now out of state. I manage as much as I can by phone and my brother and I alternate visiting every other month. My mom can’t really communicate anymore either so usually I spend our daily hone calls just telling her what’s going on with us. 
@somemom , is there any way you can outsource some of the “work” part of her care to give you some mental and emotional rest? I’m not remembering what her financial status is, but caregiving wears anyone down, and makes it hard to be family.
I have hired a caregiver this summer for showers and personal grooming, which we discussed years ago and decided what lines we would not cross. It is a great psychological break to just know someone else is involved, someone else is doing all that little stuff, cleaning her room & bathroom, etc.
I also hired a person 6 months ago to come to the house and do PT with her, we went to one PT appointment, but it’s too exhausting for her, so I have a person come here, not covered by Medicaid, but it works well. It’s another pair of eyes on her, a person I can bounce a lot off of, a person who has seen her really great and really bad. She is also the person who found us the caregiver 
So, yes, I have begun to outsource, and really the rest of the business stuff would not be helpful to have someone else do. Much of what I am doing this year is figuring out what is going on in her life and what she needs done/changed.
I do have a business trip planned and have been working for months on getting siblings to cover it, tickets have been purchased, it should be fine, I just hope that my Mom does not decompensate emotionally and be her worst self for everyone else, as I am her rock. For better and worse.
It’s a lot like when your kids are little and you are so busy with homework, and dinner, and clean up your room, get your clothes ready for tomorrow, etc., that it’s difficult to enjoy the little moments because there is too much ‘business’ to get done.
@somemom I can relate and to the others I sympathize. I am glad you put it out there somemom. Living as the caretaker 24/7, along with your own life, and family, is hard work. There is no real break. When the parent needs you to do the bills, shopping, cooking, cleaning, appointment making, driving, planning, advocating, consoling, helping, doing, making, watching, and listening it can be a lot along with doing college applications with your kids, kids needs, husband wants and everything else. I try to sit and just watch tv and talk about the news or the show to spend more quality time but it is hard. You are spent from all the other to dos. Add in whatever stage your parent is in, their age and what their memory is like and it can be an all consuming but thankless position. Hang in there
@somemom are you the one who posted about being the Magic Person? Even when you’re not actively “doing something” either for or with your mom, you’re under pressure all. the. time. Behaving as though that’s overwhelming is normal and healthy. Let the stress be your friend. It’s telling you to try to find a way to turn off and tend yourself sometimes.
@somemom this shows your are perfectly normal. Trying to have conversations without a back and forth interaction is so hard. Again there are advantages about parents not recognizing me. I still visit frequently but typically, since neither are capable of a conversation, we just work on a puzzle together.
@somemom - I could’ve written your post. You aren’t alone. I struggle with holding conversations with my mom, too. Or even wanting to. 24/7 caregiving is exhausting - so emotionally exhausting. And there is so little time to ourselves, that we withdraw to… protect our sanity?
@somemom – As everyone else has said, you are not alone in your feelings, and I think it is a completely ‘normal’ reaction to the situation you are living in day in and day out.
One question about the in-house PT. You said this is not covered by Medicaid, and maybe this is a difference between Medicaid & Medicare, but my mother’s PT has been coming to the house for more than a year now, and it has been reimbursed by Medicare. They changed the max PT benefit in 2018, so she exhausted the Medicare benefit a couple of months ago, but fortunately her retiree medicare supplement plan has been picking up now that Medicare stopped paying.
Medicare also covers having someone come into the house to draw her blood, which is a great convenience.
I hope you can manage to get away on your business trip. And I wish there some way you could escape the chronic obligation.
Interesting that PT was covered in house, I’ll have to ask about that. I had hired a personal trainer who specializes in doing PT homework with seniors, she is fantastic and comes twice a week. I just thought she’d be able to go back to PT. Twice a year I work out of town, last time she stayed with my sister, 700 very difficult miles away. Her ‘recovery’ from that has been long and difficult and she has definitely gone down a few steps mentally, so, yah, that’s not happening. I have cobbled together care this time, but I don’t know about the future- finding someone other than family who she can trust, ‘imposing’ on family-though I feel no guilt at all about asking siblings to come help given how long they have been free to live their lives whilst I think about every aspect of hers. Ah, yes, and the one local sibling who is "not inclined to help as other caregivers don’t get ‘time off’ " Don’t even get me started there.
Anyway, I cannot imagine paying $200-300 a night for someone to stay in my home for weeks, I mean, $6k-9k for a month if you look at it that way, that’s just incredible.
I know we have provided the best possible life for her, we have included her with family stuff, taken her on trips, etc., but when she is gone I want to have no regrets, so I’d love to find a way to have a few conversations with her, and yet have to be careful what I say as I don’t want her repeating every random thought that passes through her head and having them be about me 
It IS so very tough. My beloved elders don’t hear well, so conversations are difficult. Even before, we never had very deep conversations, so it is hard to start now that they’re much older. They try to talk about my “kids,” but since we all rarely see them with them living 2500-5000 miles away, there isn’t all that much to say. They have little memory about their youth and younger days, so we can’t talk about that much.
We try discussing sports but that usually is down to one or two sentences–boy the team is awful or the team won and not much beyond that. We talk about how bad our traffic is, how bad the roads are, how good the food at where they live is. It really is tough figuring out topics to talk about.
It IS tiring doing the minutia that helps elder live as healthily as we can, even if those of us who don’t have them living in our household. Making appointments, taking them to and from the appointments, getting them shots, prescriptions filled, helping arrange for any care and assistance, even these all add up.
Is there any respite care that might be available? Sometimes it can really make a difference. I had a friend who had her grandmother over for what she thought might be a few weeks–it turned into over 5 years! She needed to hire someone to watch grandmother 2 nights a week so she could at least count on having two nights of sleep a week. I’m so sorry for all those who are feeling squeezed by the many competing demands and needs, which seem to come from all sides!
I am in awe of any and all of you who live with your parent or parents. I wanted to do that but was dissuaded by social workers and family members and am grateful, at this point to be able to drive away. Even if the assisted living facility doesn’t do that much, it is safe for me to leave, which is huge.
My mother has moderate dementia but long term memory is good so our conversations often involve rehashing all the dramas of her life, some of which are painful to me but she needs absolution for things she regrets, and it is an honor to give it to her. That said, I would love some lighter topics and try to keep humor in the room!
Many of you have helped me with suggestions about her alcohol use. My steadfast decision to provide no alcohol and my campaign to get other family and friends to also refuse, has finally started having an effect. Even though she cannot remember that I won’t get it for her, and asks occasionally, I believe that this new regimen has somehow gotten through to her emotional memory, if that makes sense, because she isn’t perserverating and calling me all day long about it. Her new routine has set in- one drink in the pub- and she has forgotten the old one.
I also believe she has somehow retained that my refusals are based on caring for her and are not efforts to randomly control her, because she is no longer angry at me.
She had a bad fall and hit her head and is dizzy. I am taking her to vestibular therapy. I cannot imagine how I would feel if this had been after a drink that I had provided!! I really used this to impress upon my brother, who was about to ship gin to her, that he does not want that on his shoulders either.
We’ll see what happens when the dizziness subsides because she may go back to feeling normal enough to demand gin. Isn’t it terrible to be in a place where an injury brings family members some relief? I can’t believe I wrote that but it is true.Peace for a few weeks. Terrible I admit it, but overall she is okay other than dizzy…
Somemom, I can sympathize with you. We have evacuated for hurricane Florence and we got two hotel rooms. We did this for the exact reason you describe. I hope Dad can return to his own home. He is very disoriented through all of this. Imagine if his home is damaged.
Thanks, all, for the support, it is nice to read everyone’s stories and encouragement. It’s been a rough three years of senior care in our lives.
Wondering what folks here know about someone refusing to go to the hospital. My dad is fine how, but yesterday he had a very low blood sugar episode and protocol is to call 911. Long story short, the nurses and EMTs got him some glucose, got his sugar up and he was okay. Before I got there, the director of nursing and the EMTs told me dad refused to go to the hospital (so the nurse called the ER and PCP for advice and they all decided he would be okay).
So I said to the EMTs, “well, if he was in life threatening danger you would have just carried him to the ambulance right?” They said legally they cannot do that. I asked, “What if someone is bleeding out and refuses to go” and they told me about another case where someone actually did refuse to go for an hour. If the patient is unconscious or they think they are not making sense (stroke, mental episode etc) they can take them. But if they appear conscious and okay, they have to respect the patient’s right of refusal.
I asked about me being POA if I can insist they take them and they said it’s a gray area.
Obviously I am going to look into this more to educate myself, but I was pretty shocked. My dad has a brain injury so IMHO he is unable to make a decision like this. I will have to see if the ALF can somehow communicate to EMS that he is compromised, if anything happens again. I can see him saying he doesn’t want to go even as he is bleeding because of his compromised cognitive condition. (The problem is, that is not evident to the casual bystander).
This seems different to me than, say a DNR order. I can understand a patient refusing treatment for a terminal situation. But refusing emergency services? Anyone run into this?
Surf city does the ALF have glucagon for lows? Does he have a MOLST or whatever it is called in your state? My mother’s includes a line for declining hospital. This is indeed a gray area. For bad lows, generally, there really is no need to go to the hospital if ( depending on severity) glucagon, glucose, or especially IV dextrose is provided .
@surfcity does your POA specify that you can make medical decisions? Make sure that it does. Meet with the ALF and insist that they contact you prior to transporting to ER. My aunt always refused to go to the hospital when I or her PMD thought it was necessary. There were times as her illness progressed that, if I was not present, the caregiver was instructed to call me first. Being an ER nurse, having a medical POA and knowing her PMD since he was a resident, we would make a final determination. I had a copy of the POA, DNR, previous medical history, list of previous and current dx, rx and medication, (current, name of MD who ordered them and also previous meds and the date and reason they were discontinued) on the refrigerator all ready to go to ER if necessary. EMS sometimes would talk to me directly and I would tell them to see the POA, it helped that I also knew most of the medics. Towards the last 3 years, we avoided the ER. I remember your dad’s history of his injury, so sorry to hear his continued health issues.
Some health-care powers of attorney are honored only when they are activated, which means, for example, having two physicians certify that the principal is no longer able to make his or her own health-care decisions. @surfcity, if you think your dad is unable to make his own decisions and his health-care POA or your state law contains the requirement for certification of inability or incompetency, I suggest that you follow up with his physicians and see if they will make this certification.
My ILs have, on many, many occasions, declared that they don’t want EMS called or declined to be transported to the ER.
It’s a serious bone of contention between them and H and SIL. In fact, when FIL had his episode while we were gone, he popped up for a moment and said, “no ER.”
The ALF now calls H or his sister if there is any medical issue they are aware of. Fortunately we are all close enough to go over and assist in decision making. It’s really tough if you aren’t.
Random questions about purchasing supplies to assist with aging in place.
- On the advice of the wonderful visiting PT, I need to buy a few items that I would have purchased at a local drug store ten years ago, but am now tempted to go with Amazon. Has anyone shopped at Amazon for: shower seat, basket & tray for walker, gliders for the bottom of the walker, and a rollator?
- Has anyone had a ramp installed at own home or parents' home? My mother does not need this yet, so I am only in the research phase. I assume that Medicare does not pay for ramps, but am guessing they may pay for a wheelchair?
Unrelated question: was it here that I read about HomePay.com (maybe also called Care.com) to handle withholding and remitting of payroll taxes & unemployment insurance?
Wheelchairs: https://www.medicare.gov/Pubs/pdf/11046-Medicare-Wheelchair-Scooter.pdf
https://www.medicare.gov/coverage/manual-wheelchairs-power-mobility-devices
Many communities have organizations that rent or lend out wheelchairs. Depending on your mom’s situation, it might be worth looking for something like this.
It seems that ramps aren’t covered by Medicare. A coworker’s parents had a ramp installed at their home when the father was ill but still living at home. I think a local handyperson did it and that it wasn’t expensive.