@surfcity no nurses except the director who is there a lot. The CNAs manage the insulin for one resident, but I’m not sure they can manage a brittle diabetic such as your dad. We had the same issue at the CCRC my parents were at and I know there might be a time I will want them at the very nice nursing home. But no way can I forsee the future. You have to do what needs to be done at the time. Don’t look back and regret. @compmom so much to do. But if hospice was making things more difficult rather than helping, I understand not continuing.
surfcity I am almost 70 and not working. I raised a kid with type 1 and the school nurse called me every hour for instructions, for 12 year, and she was an RN. My daughter was hit by a car at age 22, and had a serious brain injury, was in a coma, couldn’t walk and had cognitive difficulties (mostly okay now and in a doctoral program. I had to manage her diabetes in the hospital, a month in rehab and 24/7 for the entire year of her recovery. I also had to manage her blood sugars for three further brain procedures (I had to be there; and the surgeon for her worked around the surgeon for my bilateral mastectomies which happened around the same time). I am so scared of what will happen to my daughter when I am no longer around. I am sorry but I have found that very few medical people, nurses or doctors, “get” type 1. One high level nurse at a top hospital thought that insulin was only needed for food! With an older person, I guess he can just run high since he doesn’t have years to accumulate complications-???
ams796 I like your post and hope you have a good day today. I went quickly to my mother’ redid the wound care, and am taking an art class 
@compmom I am IN AWE of everything you have done and are doing! What a hand you have been dealt!
I know recall your daughter’s situation as it was so similar to my dad’s - T1 with a TBI. Except he was in his 70s not 22 
I guess I am lucky that I never thought diabetes was a serious condition. It was just something dad had, he didn’t eat sweets and he’d take a shot before meals. And carry a candy bar everywhere he went. It’s only now that I understand many people have lots of complications.
Yes, he is running high a lot. Although he has had a couple of lows because he gets his insulin at the med suite prior to meals, but some days the dining room is a little behind and he doesn’t get food for 20+ minutes. Not everyone realizes you need to eat within 10 minutes (per dad’s endocrinologist). Mom would make sure he had juice if a meal was delayed but while she was in the hospital he fell through the cracks twice. Thank goodness his diabetes was handled okay in the rehab hospital - I naively did not think about this. They even trained me and mom to give him an insulin pen because prior to the TBI he was on the pump.
So sorry for getting this thread off track. And I do agree with you, compmom, that you are being told memory care is not an option if your mom is in a more “lucrative” personal care room. Hate to be cynical, but there you have it.
How much longer? My 83 year old father has had 3 strokes. He can no longer walk, dress himself, toilet himself, or feed himself. He has diabetes and high blood pressure. He has to see a different specialist every week. He’s a choking hazard and is on a modified diet as well as thinkened liquids since he will otherwise aspirate. He’s miserable. Lived in Skilled nursing for 1.5 years so far. He talks about how he’d rather be dead. Any idea how much longer he’ll likely have to suffer this way?
The U.S. health-care system is good at keeping people alive a long time but not so good at keeping them well during that long life. Medications and nourishment can prolong life even when a person no longer considers that life worth living.
@chb088 hopefully your dad can get a bit of QOL at his skilled care facility. I know it sucks to have all these issues and have a life smaller and smaller. Is the staff friendly? Can you think of things to help him have a better experience?
I have seen people with ‘nine lives’ who seem to be getting close to death’s doorstep and then get better.
One needs a resilient attitude. Faith helps. As a RN in a skilled facility, I have a smile on my face, and upbeat attitude, and try to have the best experience for my residents over the shift. Our recreational therapists and others get entertainment in the building and things the residents enjoy. Bingo is big among a fairly sizable group of residents, played at least twice a week; one of our residents is even the ‘caller’. He use to be HS teacher/administration.
@SOSConcern - Thank you for what you do! My dad was fortunate to have many staff members in his full care memory unit who wore a permanent smile and were very helpful and caring. This made a very difficult end stage of life a little more pleasant for him and our family.
I guess in hindsight we were lucky, when my dad was first diagnosed he was sent to a psych hospital for 2 weeks. The social worker at the psych hospital hooked us up with a gal that matched people with facilities depending on needs and budget. Without her we would have been completely lost. I know this kind of person is quite common in California but I don’t know if they exist in other areas.
@rosered55 - you are exactly right.
I had a front row seat to observe this when my FIL began to decline. There were numerous interventions as he began to stair-step down in health. Part of the problem (honestly, a big part of the problem) was that my MIL was in complete denial that her husband was dying. She fought his dying tooth and nail. She was simply unwilling to believe what was clear to see and the doctors were willing to do everything to ‘help’ my FIL. (I’m not blaming the doctors - she never asked them, “if this was your spouse/parent, would you do this procedure?” )
It was painful to watch. His quality of life was pitiful. At the very, very end, she began to realize that the interventions needed to stop, but by then, he was so very ill that there really was nothing more the drs could do. I believe that she does not want her children to be as aggressive with her treatment when she begins to stair step down.
@chb088 I ask myself this everyday. Have you talked to your dad about his wishes? Does he want to continue with aggressive care which requires weekly trips to a doctor and a special diet? Or, due to his suffering, would he be interested in considering more palliative options? We can always opt out of the medical system if we wish and choose to die a natural death.
My dad died in January 2004. He had suffered a massive stroke in December 2003. After the stroke, when he was conscious and aware, he was miserable, mainly very depressed. He developed a septic infection and perhaps had another stroke. My mom had to decide whether he should be fed artificially. She decided against it. He died two weeks after the infection was diagnosed and one week after my mom made the feeding-tube decision.
Feeding tubes really prolong “life” and suffering of loved ones. H and I have decided that for us, we don’t want it except as a very short-term temporary measure. H’s best friend’s wife had one for years—it was torture for the best friend and their kids and didn’t provide any quality of life for the patient.
But there is a difference between tube-feeding and being on a pureed diet & thickened liquids. My mother has been on a pureed diet & thickened liquids for almost 12 years due to a stroke. Her QOL now is horrible, but it’s because of dementia, poor vision and hearing, not because of her diet.
I agree, @shellfell. My dad was basically unconscious, and he could not swallow. My ex-husband’s mom has had Alzheimer’s disease for at least 10 years. She cannot feed herself but she eats when someone else feeds her and she can swallow.
We have the maximum limits on the MOLST- DNR, no transport to hospital, no artificial ventilation or nutrition, and were told we could negotiate these at the time but it was better to have it this way than have any latitude on record.
However, I am finding there are nuanced decisions to be made all the time. I had my mother’s hematoma slit and evacuated and am so glad we did it.
Just got a call from a new home care service nurse, who was great and chatted me up, noticed a lot with my mother, and had good advice. This is Bridge to Hospice, and after evaluation they can put her on hospice again, but right now I would prefer the support without the rigidity of hospice.
Good luck everyone. So many people are dealing with this. Hats off to everyone.
This: “I am finding there are nuanced decisions to be made all the time.” Yes, yes, yes!
I just want to say that in my experience with AL, the services offered aren’t meant to be complete, not on the level of SNF. It may seem like you can pay for more, but so many are only set up for scheduled things like showers, meds, BP, PT, etc.
So bff had 9am-8pm aides, went to feed her mother breakfast. The cost, I mentioned way up thread, was 17k/mo, total.
The hospice I vol with is non-profit. Not sure if you’re wanting a for-profit, but this one is amazing. Highly rated and determined to stay so. There’s also (at home or in a nursing home) respite available. Eg, a vol comes for an hour or two (sometimes more,) no personal services, but can talk, play games, play music, or just be there. The vols I know are kind, care about this work.
It’s a very emotional thing to deal with our elders. My heart goes out to all of you.
Yes, so many nuanced decision @compmom , it’s always a situational decision. I just made the decision not to bring my parents to see specialists, beside the primary, psychiatrist, and podiatrist who will come to the home. They are on no medications to manage besides behavioral ones. It is consistent with their previous wishes as I have always had end of life conversations with them. There is no “right” answer. Just know we are all doing the best for our parents as we know how.
@lookingforward, I am looking for a non for profit hospice. They typically can offer more, including volunteers.
Whew, just got back from the care home. Dad was vert agitated, got violent with mom (never saw that before) and pushed me when I got him away from her. I then removed her and we did a water painting together. One of the other residents was understandably upset. Things are stable now. Hope this is just a one time situation. Taking tomorrow off from work to check on them.
So sorry GTalum. Hope it’s a first and a last. At least for awhile.
Lots of good information - both resources and real life - here. I need to look into the POLST form the AL gave me, after the rehab put a DNR bracelet on mom. I think I know what her wishes are but I guess I really need to answer a lot of specific questions. All of your practical comments are helpful to read here!