@tx5athome not that it matters what I think, but I think you made the right decision. Hope you continue to feel comfortable with it and have a wonderful visit with your aunt. (((((hugs)))))
@tx5athome I feel for you, but I agree that you made the right decision, especially with severe dementia. My mom’s is not severe but I feel like her QOL is not good and like you, this is not “my mom” any more. Of course it still won’t be easy but I hope it brings you some peace.
And I hope you have a nice visit with your aunt.
So tough to have this be the timing @tx5athome , yet you have made a decision that is likely the best possible. How helpful to have Dr’s who can be direct about “what time it is” for a patient and add to family members’ confidence. I have had to make such a decision for a parent with dementia and knowing what they would have wanted, plus how challenging things were becoming validated the comfort options only approach. Wishing you peace and a good visit with your aunt.
@tx5athome - I’m sorry about the timing but I agree that you are making the right decision and it will be a peaceful passing. Hugs to you and your family!
New day, new problems. Dad has bounced back and is now super agitated about being locked up in the hospital with strange people who won’t let him out of bed. Plan is to send him back to his Memory Care within 24 hours on antibiotics and hospice supports.
There’s no reason why a hospice plan of care can’t be followed at the MC. I hope your day feels more peaceful back in familiar settings.
@tx5athome So much weighing on you. Wishing you well.
@tx5athome It’s sad that this would happen the only time you have been away. But it is not something you or anyone gets to plan. I hope you have a good visit with your aunt. Sending you a hug.
Hope your visit is fun and memorable with your aunt, and that your dad gets adjusted back at memory care.
@tx5@home, hospice will be there daily, one hopes (at least an aide). I hope that you can relax and enjoy your aunt, who will also be leaving this earth, and it is so nice that you are spending time with her while still well.
Did your father bounce back and so they decided to do antibiotics? Or did they end up doing them despite what they said to you? I was so impressed that the doc was giving guidance like that. I think many of us are told to decide for our loved ones, and that is a burden, even if necessary.
So like @MaineLonghorn dad recently, your dad may bounce back. (My mom did too, the energizer bunny). Things are so complicated for you!
I remember that the first time I went away during this whole elder care thing, I had ONE foot on the plane and the phone rang to say my mother had just gone to the hospital. The entire set of front rows got to listen and watch while I decided what to do with the OTHER foot!!! I got wise advice to go on my trip. My mother, in that case, was going to be fine and the hospital was actually a good place for her while I was gone 
You made the wise choice too Hope you enjoy your trip, short as it is.
My Dad bounced back a lot. I think when he presented in the ER he was quite sick. ER physician suggested antibiotics and hydration. He had a dose of antibiotic. Then the internist suggested not giving the antibiotics and letting him go. Then overnight he regained strength and was agitated. So in my mind he was back. Palliative med guy suggested antibiotics and send him back to memory care. My dads dementia has caused him to hate to be touched and so being trapped in the hospital bed, not understanding what is going on has him super agitated so they are sedating him heavily. My hope is he gets to go back to Memory Care soon where they know to give him space, etc…
@tx5athome , good luck on your trip, My DH swears every time we did anything, my Mom’s care would call for 5 years. Nice to be able to see your aunt and your sister.
I am going to go see my dad next week. Haven’t seen him in a very long time(9 months). I was supposed to see him in April while my brother’s family went to Israel. Dad lives with my brother and had been in good health. I can tell he just took a big step down though. My brother and family are not gad-abouts, but do go to church etc. (Dad doesn’t). Now my brother is going to Alaska for their son’s divorce/birthday combination and I am going to go be with Dad. I’ll have a full week, but not 14 days of quarantine since being in LA for DH to have 3 days in their hospital. I never went in with him , it was 2 days tests (invasive) and one day treatment. So hope we washed our hands enough … … …
Now I have to decided if I am going to try to see my brother or not because they will have been on a plane. That normally would belong in the travel thread, except I am worried about Dad, then worried again about my DH on the way home (I’m driving the 700miles on my own, not stopping). I sure hope my Dad doesn’t pass away while my brother is gone or else they will be suspicious of murder. … Only partly kidding because I am not opposed to letting go and comfort care only. Especially when the quality of life is getting worse fast. (Dad is almost completely blind and listens to books on tape all the time, but now his hearing is going and he is falling more often which scares everyone).
Back from my trip. My aunt is quite thin (96lbs) but has a great attitude. She gets chemo every other week, so we were on the good week and although weak we had a very nice visit and I think she was very happy we made the trip. My dad is back at his Memory Care. Evidently he still has a catheter. They required me to get a personal aide for him, but hospice for whatever reason is also sending a nurse, so the memory care is going to tell the personal aide service that it is not needed at this time. He is still quite agitated. Hospice has put him on a lot of medications. They are trying to treat his agitation, but the Memory Care staff and I know that the reason he is agitated is because people are touching him and he is not allowed out of bed. He is on quarantine at his facility until Saturday. The Hospice staff don’t appear to be listening to the Memory Care staff. The hospice nurse was horrified with his room. Full disclosure I set up my Dad’s room. Every time I brought in furniture or it that way. Since he is now hospice I get to visit, so I am going to visit and access in person today. The Memory Care director and I have discussed it and have decided that we will allow him to be drugged until he gets through quarantine (when he was previously quarantined he got very agitated) and then we want to dial back the medications. We both agree that there are definitely “too many cooks in the kitchen”. Why is everything so stressful?
Both as a hospice volunteer and as the daughter of a parent on hospice, I experienced that “too many cooks in the kitchen” and with one hospice service, found they always thought they knew best. I had to be kind of aggressive to get them to decrease and eventually stop some meds that were causing a huge fall risk. Glad the MC staff are allies for you.
My mother got a wound somehow about 10 days ago. It is now infected. I am upset with the lack of attention the assisted living staff have paid to this wound, and think that is the reason for the infection. When I could do wound care, I changed the bandage daily after washing with saline, and used neosporin. Also used fancy Mepilex bandages, not gauze and tape.
I honestly think the bandage wasn’t changed in a week. It also got wet every day when she showered.
The private nurse I am paying to do colostomy during COVID is the one who alerted me to blood on the sheets. The AL hadn’t noticed the bleeding.
She had a telehealth appt. with doctor who prescribed antibiotics. I visited and the leg where the wound is is very swollen with fluid. Hmmm. Let doc know.
I have been afraid of a fall and wound for some time and I guess this is pretty minor compared to what you all are dealing with. But it drives home the inability to go to her room and take care of her!
Anyone want to hear a bit of good news? Recap - My Mom is in a nursing home and had dementia. Two weeks ago, my Mom took her dentures out, threw them and they hit the wall. The nurse thinks they weren’t seated right and Mom got frustrated with that big lumpy thing in her mouth while she was trying to eat her breakfast. Four pieces broke off, but not the teeth. This was such a bad thing to happen because 1) pandemic 2) Her old dentist made them for her a long time ago, probably 15 years and I have no idea who he is, whoever he is, he lives in a town two hours from me.
My husband thought maybe he could smooth out the places where pieces fell out with a dremmel, so we asked them to mail the dentures to us. We live just over an hour from the nursing home. They did.
My husband realized right away that fixing dentures was not something he could do. We were wrestling with the problem while talking with our friends, trying to think of a solution. My friends Mom has dementia too, and we often commiserate together. Anyway, our friend all of sudden remembered that he has a friend who makes dentures for a living! And he lives ten minutes away! He called up his friend and he said to bring them over. I took them over yesterday and he looked at them and said they would be ready in two days!
Wow, that’s great! A good friend of a friend to discover!
My mom got good news. I think I mentioned that she had paid for two months for the retirement facility she never moved into. One month’s rent will count as the deposit when she moves in eventually, so she was out just one month’s cost. But we got a statement today that she overpaid the first month, because it was supposed to take effect April 10 but she paid for all 30 days. So she’s getting a refund check! This is the place that waived the 60-day notification clause - they had the right to charge her for two additional months once she told them she wouldn’t be moving in. Talk about excellent customer service. Rare these days.
Disappointed in my brother. We agreed way back in January to take turns visiting my dad, alternating months. Guess who has been the only one going?
My brother always has some excuse. Hey, my life is busy, too, but I go. We both have to drive the same distance and it is not easy, especially now. We both live in Covid hotspots and are going to another one. I seclude myself before I go. (But I think I am more likely to bring it home fwiw.) I fight more with my dad, always have, but have a stronger sense of duty.
My brother is very passive. I think that is most of the problem. Yes, I have told him to go, but he is also stubborn when pushed too hard so I can’t do that either. I wonder if my brother is afraid to go because he is afraid of the feelings he will have when he visits and my mom is not there. This would be his first visit since she died.
Just venting. Bro said he would go in June and didn’t. Then he said he would go in August, but no plans have been made and I am pretty sure he won’t follow through.
@Lizardly when did your mom die? Maybe you are right and he is avoiding it. Sometimes the only full realization of loss happens with a visit like that and finding she is not there. So sorry you are shouldering this alone.
My mother’s wound concerns me. There is a large sunburn type area surrounding the wound on her shin, and the leg is very swollen. She is on low dose Keflex but I am wondering if this is some occult infection. Toxic shock? Nurse and I agreed she was more confused. She could not make it to the outdoor visiting area and they got a wheelchair: she never has trouble getting there. This is not like her.
When I was leaving she kept asking me to come in, which I can’t do, and then her face scrunched up like a little kid and she cried and said she missed me. This was followed by an evening of calls (4) about getting a real estate agent so we could live together.
She really has no understanding of what is going on.
Six months ago, so pretty fresh. We traditionally gather for Thanksgiving. If he skips that, then I will be certain. Also more disappointed.
I would also be very concerned about the wound and your mother’s deteriorating condition.