Wow, that sounds tough. I will be thinking of you and your mom.
@compmom. I am terribly sorry that your mom is in this condition and suffering. I know this is super hard on you as well. I understand your feeling of being alone in figuring things out for her, because my dad (89) also has vascular dementia. He is still at home with my mom (81). She and I do the daily care giving, I have been seeing them daily for the last 2 1/2 years. Thereās just too much to share about these past years, but I understand how you feel. Most days I feel so terrible of leaving after a few hours because my mom is with him 24/7. Some days I feel overwhelmed with making the right decisions for him because mom relies on me to make all the decisions. Thinking of you and your momā¦
Thinking of you too! At least my mother is in assisted living.
I did drop by, 6th day in bed. Aide tried to get her up, no dice. Sometimes I can get her up but not this week.
Thanks all.
I am glad that you are changing hospice care. The first hospice my FIL had was highly recommended, but we had a terrible experience with them. I was so glad that H & his sister decided to engage another hospice. They were so wonderful, both to him & to the family. I strongly feel that you have to trust your gut when it comes dealing with end of life challenges.
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We changed hospice services, too. We went with a very small group that did a great job, until my dad recovered so well he got kicked out.
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My mother has been on hospice twice in the past. During one stint, she was upset at dinner by another resident and started hyperventilating. The nurse took her upstairs and called hospice. The hospice nurse rushed over and called me to say my mother was ātransitioning,ā based on her breathing patterns. Then gave her dilaudid and ativan (along with the usual gabapentin and Lunesta). She was practically in a coma. She was not dying. She was just upset at dinner. (I asked them to call me before giving meds like that.)
Thatās awful. I am so sorry that happened to her.
Iām sorry about your mom. I hope this is okay to write. Hope itās not too morbid. Maybe itāll help someone struggling with this as I had. I had my dad at home until he died. His breathing would be really bad at times especially a few months before his death and Iād look up ātransitioningā and āralesā and the descriptions would seem to fit. Youād think for sure he was going to be gone tomorrow. I always asked if he was in pain and he always said no. Then heād improve overnight or in a couple days. When I heard the real thing within hours of his death there was absolutely no question about what ārales and death rattleā actually were. He still denied any pain. I think people who work in hospice are a bit to quick to ājump the gunā since the expectation is that the patient is supposedly dying within a certain timeframe.
I have experience with end of life transitions with my mom & my brother. I agree that once you hear it, you know what it is. An experienced nurse, doctor or hospice worker should be able to tell the difference between difficulty breathing & end of life breathing - but maybe itās not as clear as that.
Iāve done a lot of reading and also did hospice training as a volunteer. But have not yet experienced the death rattle.
The time frame for hospice is 6 months.
I felt they should call me considering her dementia and my invoked proxy, before medicating her so heavily. I would have told them she hyperveniltates, flaps and shakes!!
You have gone through so much. I donāt know how anybody fixes this. Sometimes people just decline, and thereās nothing you can do, but get and provide small amounts of joy while you can.
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My siblings and I define quality of life differently. My mother says how much she loves looking out her window at the trees when lying in bed. She also loves the sun on her face- if I can get her out of bed!
I love your post- wise and poetic!
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My sisterās MIL is 86 and has been in a lot of pain for years. She could have had surgery but felt it was too risky and declined. Saturday they took her to the ER in Indiana. The doctor told her she has to have heart surgery (not related to her other condition). She is leaning towards not having it even though she understands it means she will probably die. She just feels worn out.
All this at the same time our dad is having surgery to replace a leg artery. Heās in the OR now. The doctor told me I could leave the hospital because it will be a few hours but my sister requested that I stay in case something happens. So I will. I have a Jodi Picoult book to read so it will be ok. I did run by my childhood home which was torn down last month. Ugh ugh ugh.
I discovered that my squiggly veins are inherited from Dad. The first nurse tried twice to get an IV in without luck. Dad insisted on getting a more experienced person so the supervisor came over and got it in the first try. She had to use a smaller needle than usual to even draw blood. EXACTLY what I always go through. After Dad told me this is typical for him, I wish heād let me know ahead of time! It probably wouldnāt have helped, though. I always tell the nurse Iām a hard stick and would like their most experienced person. She always smiles and proceeds and fails, usually more than once. Says Iām sorry, which bugs me. Then the experienced nurse comes over and gets it right in. Iām so sick of this happening over and over again. Itās even harder when itās my dad, though. 
Iām wondering if anyone on this thread lives in the Twin Cities area or know someone in the area, who can recommend good home care agencies. (We live 8 hours away). My 89 years old FIL fell at home over a month ago and was hospitalized and was in rehab for over 3 weeks for a hairline fracture in his vertebrae. He has now been in AL for 1 week and things are not going well at all. He is desperate to go back home so we are trying to figure out how we can make it work. He will need home care aids probably twice a day at least for several months. We realize this will be costly, but he is very comfortable financially. Any suggestions will be helpful.
In the meantime, my husband will have to figure out how to arrange his dadās house to accommodate his father in his physical condition, luckily itās a ranch, but heās has lived alone for 50 years and hates change.
My own father, same age, has had multiple hospitalization the last 2 1/2 years and these incidents have left further damages to his vascular dementia issues. He is able to live in his house because of my mom who is by his side 24/7 and I visit them daily to help and to give her some relief. We also added grab bars everywhere, hospital bed, stair chairs, anything and everything to help them both. This has been a lot easier to do bc I only live 15 mins away from them. I basically run every aspect of their household and take care of all his medical needs - meds, every medical appointments, etc. I just donāt know how we can provide all that will be needed for my FIL when heās 8 hours away. I know we need to find excellent help but the know realities of how difficult that will be.
Itās only been a week. Yes he wants to go back home but why? Is it simply the newness of AL?
My father-in-law who passed away at 91 resisted change with every inch of his being. My mother-in-law died when he was 89. He was falling all of the time at home. Finally after the last fall outside where he laid there for hours before the neighbor found him(he refused to carry his cell phone or wear a fall alert braclet) we forced him into AL.
He did not like AL either and constantly wanted to go back home (even smacked me once with his walker). But when he got there we found unhealed sores and his diabetes was totally out of control. At some point whether we like it or not AL is necessary.
Is he having trouble adjust to AL or is it a problem with the AL place itself? Talk with him see if you can figure out his concerns.
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I wish it was just the newness. From what we are hearing from him and his close friend, heās not getting the help he needs, things he is paying extra for - med dispersement has been wrong a couple of times, no one comes to help when he calls for help (he was slipping out of the wheelchair), the fridge doesnāt work, only the freezer part works and they said they canāt swap out the fridge, the hospital bed they provided doesnāt have side bars or handles to help him get out of the bed (which they said they were going to install), the hot water never warms up even after running it for 30 minutes. I called the Exec Dir last week because I heard he was absolutely humiliated by a staffās response to him having a bathroom accident. It was his first time in this state and he was so embarrassed. It was just terrible that the staff who helped him clean up made remarks that made the situation even worse. Heās a Scandinavian old soul who has been fiercely independent all his life. He has never been humiliated like that ever.
It sounds like staffing is a big issue - not enough, not the most helpful, I donāt know exactly. I am getting the calls with complaints because my husband is so busy with his job. My FIL never complains about anything in his life. Heās someone who never ruffles feathers but heās complaining now and we know heās serious about it.
We know that before he can go home, he has to heal and recover more fully and the house has be to ready and aids/help have to be hired. This canāt be done over. night. In the meantime, we think he may need to go to a nursing home where he gets more 24 hour care. When at rehab, he wanted to get out of there so badly so AL was the option. He now realizes that this AL facility is not very good. Heās paying $7800 per month!
My very infirm father has a 24/7 live in aide, and it is MUCH better than a nursing home. If in a nursing home, heād be in the highest level of care, memory care, which starts at $500/day around here. There would be one nurse for every 7 patients. His aide costs $300/day, and gives one on one care, walks with him when he wants to move around (he can barely walk), cleans him up (he is incontinent), makes sure he takes his meds etc.
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So many tough situations. Try to find a better solution since a best solution is elusive.
A very good friend had an excellent caregiver/live in for her parents. It took the burden with worry away because they knew their parents were happy and well cared for. That situation didnāt last forever, but it lasted a long while. āWe have Barbara!ā
I understand many things from both facilities and patient/families. I know one often doesnāt feel their loved one is getting the care relative to the high costs. There are mixed feelings with a facility option. However trying to get another situation for their family member at home usually takes a son/dau/family member that lives locally or can stay around for a while to get everything set up and running smoothly.
Change is hard on everyone, and how flexible one is on their level of happiness in the new situation.
Trust in the caregivers can be a challenge when even the most simple instructions are not followed, and one sees deficits in care as well as attitudes. If a first impression is not good.
Tough to trust an elderly person at home alone who is not safe at home w/o care, but how to get enough care and the right dynamics working.
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@SOSConcern You understand the situation. Itās really tough any way we look at it. FIL is so devastated, humiliated, and in great of pain. His dear friend is trying to help him, but sheās 80 and canāt do much. My husband is trying to listen and figure out a way to meet his dadās needs but feels a bit overwhelmed and relies on me to help him navigate this. FIL and my husband donāt have heart to heart conversations about anything so FIL tell his friend all his worries and anxieties. She then calls me to relay the concerns to my husband since my husband doesnāt have a relationship with her. Itās a mess. The only thing we do know is that FIL canāt go home until all the pieces are in place and he canāt live alone in his current physical state. Finding a home care giver is really challenging. It took 2 months to find a home care aid for my parents to come help once a week. I canāt imagine how hard it will be to find a live in.
The best option for us is if he is willing to move closer to us, even temporarily so we can help more directly and often. However, I canāt imagine he will consider it.
My MIL died last September in hospice due to long term cancer (they were divorced and also lived in MN) so my husband was in knee deep with her illness and all the complexities of end of the life and post life issues. I am in knee deep with my dadās issues and preparing for scheduled surgery for him tomorrow with a lot of trepidation. My dadās dementia makes him a terrible hospital patient. He has had 4 hospital stays in the last 2 1/2 years and I know exactly what to expect. Heās recovery will be greatly hindered by his dementia.
How did you find the the live in aide? What state is he in? Though I canāt imagine FIL coping with a 24/7 live in aide, even temporarily.