Meeting with stoma nurse today to investigate belts with pouch protector and/or wraps to problem solve. So grateful to aides trying so hard to help.
I got 5 phone calls in the late afternoon yesterday, after spending all morning with her. In each and every call she asked if I had her “little red phone.” Each time I had to tell her that she was calling me on it!!
^^ @compmom - that made me laugh. My dad has called me twice to say, “SurfCity, I need you to call me so I know how to get in touch with you!” or “Surfcity, I need you to call me because I need to talk to you”
He seemed surprised when I said I was talking to him now and he can just say whatever it is . . . 
surfcity THAT made me laugh!!
My mother gets herself up and out of bed, slowly and with difficulty, shuffles slowly and with difficulty out to the family room, down four steps, and then when she sees me, she asks me to please oh please, put her to bed.
I had a real scare today. I took mom to the doctor, to lunch, and then we came back and she sat outside while I worked in the yard for a little bit. Each time she was able to walk with my assistance until it was time to go in. We got to the step and she just crumpled. I had to get help from my H who was luckily at home. She was fine, but just couldn’t follow directions. It’s like she couldn’t remember how to stand on her legs. It reminded me of when my kids would just drop in front of me and expect me to catch them - except she weighs quite a bit more. I’ve had to take her out alone many times and now I’m nervous that those days may be over.
Somemom, that brings back memories; her last days at the memory care center, my mother begged us to please, please put her down. Those were traumatic times.
@psychmomma I stopped taking my dad out alone in the past year and my mom about 6 months ago for that reason. They just couldn’t follow directions. I was afraid of what I would do in public if they froze, couldn’t remember how to walk, or just started walking away.
I stopped taking my mom out alone too. She’s not stable enough and if she goes down on me I won’t be able to get her back up. The most I will do now is take her to the sit at the pool on the independent living side of her facility because there are always people around if I need help. It’s s loss for sure.
When she was still home, we went out in pairs. Logistically it was tough.
I have been following along here for the past few years since my dad died, but now I feel like I’m in that no man’s land of elder care. Mom’s needs are more amorphous than concrete. Full disclosure - I don’t have primary responsibility for my mom, I live 450 miles away. My sister lives 7 minutes from her and is the day-to-day one on call.
Mom flew here (alone and did fine) for Passover and has been with me for the past five days. Today we leave to drive back to her home, stopping overnight at a lovely inn to celebrate her 87th birthday, early, since I can’t be there on the actual day next month. When she first got here Saturday she seemed her usual, 87 year old self. A little forgetful, a little slower but generally ok. She participated in the Seder and even got furious with my husband for not letting her help do the dishes (he’s very territorial about his clean-up responsibilities). Then Sunday she seemed tired but ok and Monday I took her to walk the mall. I recognize it’s more exercise that she usually gets, but she wanted to do it and seemed fine. She napped when we got home but woke up very tired on Tuesday. But we went to lunch with a friend of mine and her mother and then just took a very short walk on a beautiful day. Her breathing became erratic and, to be honest, I was worried. She said she had no pain so I didn’t pursue. her cardiac issues are over 40 years old and she is a pretty good judge of when to call intervention. She was exhausted last night and this morning she is beyond exhausted. I think even these few days of activity beyond what she’s used to have just worn her out.
She begs me to plan some travel, but to be honest, she just can’t handle it anymore. I think I’m just venting because I know how lucky I am. Her memory sucks, but she manages her day-to-day life, however limited it is. Unless my sister takes her out she spends all her time alone in her apartment. And I cannot yet convince her to let us hire someone, a companion, just to give her someone to talk to in person. All I get back is, “I’m fine, I prefer to be alone, and no, I do not want someone here.” She is still competent to make these decisions but we’ve warned her that if a crisis happens, she will be forced to accept whatever arrangements we make with less say in them. Ugh, I hate operating in a crisis.
Thanks for being my internet “ears.” Much appreciated.
My mother and I fought that battle for a loooong time. Then I went on a vacation, which I hadn’t done in several years, and left her in the care of a good friend who had stayed with her before. By the time I got back, she was thoroughly spoiled and wanted “her friend” there every day.
My mom couldn’t take out her brother (my uncle) alone as he needed a wheelchair which was too heavy for her to get into and out of the trunk. I drove them and pushed my uncle. Sometimes we’d go to a store like Costco that had an electronic cart and he loved just getting out and talking with people (he was very friendly). Now, she only wants to go out with family members–her kids or grandkids.
Looking for any advice/experiences anyone can offer…my Dad who was in Memory Care fell and broke his hip Friday…it was a dreaded event…they werent able to do surgery until Sunday as his cardiac enzymes were elevated and they had to transition his blood thinner to heparin. He has significant memory and processing issues and doesnt remember why he is in pain and screams and swears when the move him or do PT. This week he has become combative and has delirium I beleive as he is saying things that are not oriented to any present reality. I have talked to the palliative care doc about managing pain better and decided to try a bit of rehab to see if he can at least get the ability tp transfer and then do hospice with a move to a nursing home. Then last night after I left he was screaming for me and made the PCA call me. He wanted to know if I could help him get dressed as we were going out to dinner. I called the nurae and I guess one of the medicine docs ordered seroquel which made me very angry as no one spoke with me before doing this. I get it and it could help but I would have liked to have been a part of the discussion especially since they are changing pain meds at the same time and discharging him today…sorry so long…any words of wisdom would be appreciated
I’m so sorry @Aekmom!
Tell the staff verbally and in writing that you want to be notified of any med changes.
I would also see if there is a hospice program in your area that has a palliative care program that could get involved now for pain management. That would also make the hospice transition easier.
@Aekmom, my dad, who had little to no signs of dementia, broke his hip at age 88. After the surgery, he had what was described to me as post-anesthesia psychosis. He was hallucinating non-stop. They gave it a day to see if it would resolve, and then gave him one dose of Haldol. The next day he was sleepy but rational.
This was a while ago (2012 or 2013) so maybe the protocol has changed. I remember how terrifying it was to watch him scream at my invisible stepmother, so I definitely feel your pain. Hope he improves soon.
Anesthesia, pain meds and Seroquel will all affect mental status, not to mention stress and confinement in a hospital bed. How was his quality of life before this? Has he been on hospice for dementia?
We just considered getting our mother back on hospice while she was in the hospital but did rehab instead. Of course on hospice, rehab is not allowed. Tough choices! Docs did not want to do pain meds after surgery due to effect on dementia, but her surgery may have been less painful than your Dad’s hip. Dilaudid was ordered but never used.
I have an invoked proxy and the hospital gave my mother Ativan without calling me. They also put a nasogastric tube in with no warning.
I went in and put in writing that I have an invoked proxy and wanted to be involved in any medical decisions and be there to help her deal with any procedures. After that they did what I asked and I appreciated it.
So sorry. It is difficult and painful for you to watch him go through this. I have a couple of questions- Your dad was in memory care at the time of the incident, what was his mental status at that time? You mentioned that his cardiac enzymes were elevated, is it possible that the fall was due to a cardiac event? Are they re-evaluating any cardiac meds? Lack of blood flow and O2 can contribute to mental status changes as well as meds and pain. Bone pain is excruciating, an evaluation of his pain, (by either hospice or a pain management specialist and pain control measures are vitally important. Many MD’s are concerned about pain medication in dementia patients, but a specialist will be knowledgeable of risk/benefit factors and more aware of either alternative or combined medication/treatment options. Wishing you both the best outcomes with discharge today.
Wanted to add that it is very important the facility understand that no treatment or medication is to be administered without you giving prior authorization.
Seroquel is a Godsend for people with Lewy Body Dementia, who have hallucinations and are not well grounded in reality. Haldol is contra-indicated for Lewy Body, it can actually cause psychosis. Just an example of how critically meds affect various conditions differently. I’m on Lewy Body pages/forums and read of many people who are Dx with LBD or other more seriously non-functional dementias after anesthesia. It can be temporary, or forever. I hope for your Dad that this is temporary!
So when I arrived at the hospital he was very out of it, reaching for nothing, fingering covers, twitching, saying things that didnt make sense…in and out of sleep.same here now that we have moved to rehab…palliative doc thought either hospital delirium or slide towards death…or the seroquel is having a strange effect…my plan is to give it a few days then decide about hospice…pain management is goal for now too…His mental status was poor before but oriented…what is happening now is a marked difference…palliative doc was struck by the change in one day
Cardiac enzymes where either from stress of the fracture or a heart attack
Thanks for all the words of encouragement…
Does your hospital or town have a geriatric department? Sometimes getting another voice is very important. And yes, you have to tell each nurse and the nursing supervisor that you MUST sign off on any treatment. They change shifts and That information gets lost sometimes (although nurses are not playing cards … it gets lost because they focus on the patient and not the visitors) You have to convince them you are not a visitor but … … … a PARENT for your dad and need to be treated as such.
And hugs and good luck with these terrible transitions.