My husband has been under the care of hospice 11 months and shows no sign of slowing down, which is fine with me, but I struggle over the best way to care for him. After 2 years of nightmare experiences with in home caregivers a few days a week for my respite, I decided to try a memory care facility day care program 2 days a week. I love that it has activities, brain boosters, etc., although my husband sleeps most of the time and, although he seems content while he's there, he really doesn't like to go and grumbles all the way there. I feel the activity is actually improving him. If he really is dying, and who knows, do I keep trying to improve his quality of life or let him Rest In Peace? How does one know what's best? He has Parkinson's and dementia.
I know some of this responsibility will remain when they are in a facility but it shouldn't be as limiting in my life. I have been 4 years without taking any time off. I worry about the next sick spell that will require hospitalization for one of them.. while I am still left to care for the other.
Any infection.. like UTI's, bronchitis, pneumonia... are a constant worry for me. The last bout my dad had with pneumonia he was hospitalized while I was left careing for my mom who also had bronchitis.. both took a scary downward mental spiral while they had an infection. It was a couple of weeks of sheer h*ll and I still to this day (months later) don't think I have gotten over it yet.. the exhaustion is still there.
I am also going back and forth in my mind about facility vs at home. The biggest issue right now is that I don't think I can physically make it much longer in the current arrangement..it is too much for someone with no family support. I hate that the deciding factor may be me.....
Can't tell you which is better but I believe that as long as you can keep him home in his familiar surroundings it is better for him.
I think it all depends on the person. AL is one thing. A nursing home is another. My mom was in a nursing home's longterm care unti for two weeks after being on their rehab floor for 4 mos after a stroke. The longterm unit was an absolute nightmare and intolerable. She had a horrible roommate, they would just park all the residents in the world's most depressing "TV room," and let them sit there all day. My mom is not demented, so she was fully aware of her surroundings and begged me all day to get her out.
We were extremely lucky because her apartment (in which she lived alone) is fully wheelchair accessible. She needs 24/7 care and in NYC that is now being covered 100 percent by Medicaid (after shelling out a lot privately before that went through).
She has 2 caregivers. One does 4 days, one does 3. One of them we have had since the beginning and she is just wonderful, one of those rare ones you feel you can't live without. The other ones have been a mixed bag. A few were let go by the agency, but I have now fired 2 of them - one who was sweet, but very young and not up to the level of care, and one who was a total prison guard, with not an ounce of warmth or humor. Her replacement just started yesterday and I am nervous. She's very kind, but older (60 ish) and does not seem comfortable moving my mom from bed to wheelchair which is nerve-wracking. All the other aides were able to do this with no problem. We have a hoyer but no one else has needed it and I am hesitant to use it because it just makes simple transfers complicated and makes my mom feel more like an invalid.
Again, it all depends. I'll keep finding new aides if I have to rather than ever put my mom in any of the nursing home options in our area.
Your choices are:
#1 Live in place with home health aides coming in.
#2 AL
#3 SNF
#4 Making sure to choose the one that will be best for all involved.
Anyway, my feeling is that when our loved ones are nearing the end of their lives, we should allow them to indulge in any pleasures they want. Why not? That's what I hope for when I'm at that age. (If you haven't read Roz Chast's brilliant graphic memoir about her parents' decline, get it asap!)
A beautiful new Memory Care facility opened up. I was getting tired from interrupted sleep every night and from having caregivers in my house everyday. We had just down-sized our home and we were trying to get used to the smaller place, when we had to take over mom's care. We moved her into the memory care unit. $4500/mo I supply briefs, pads & wipes, as well as her clothing, linens & hygiene supplies. I was amazed by the relief I felt and how my mother adapted so soon. I did have some issues with the caregivers, mostly because of her incontinence and anal redness. I had her PCP order Calmoseptine twice daily, instead of as needed. I found out that PRN/as needed meds are rarely given. I'm told that the CNA cannot make medical decisions, but the med techs don't assess (look at her butt). So a twice a day order has worked. They toilet her every 2 hrs, while awake. This is a $500/mo incontinence fee, included in the $4500 that I mentioned earlier. The caregivers are trained to allow the residents to do and say what they want. They go along with their crazy stories and redirect them if the are stressing over something. My mom asks where her husband is very often (he is deceased) and they say he is playing poker or at Walmart. She is fine with that. My sisters and I had a hard time in not correcting/arguing with her. We have learned a lot, since mom has been in the facility. Hope this helps. Your health and wellbeing is important. You can visit as often as you want & you can be free to enjoy your life. God Bless you all!
Another problem is that Medicare no longer allows rails on the beds and now there is an effort to ban bed and chair alarms. It seems the new thinking is that it is the patients right to fall. With all the interest in health care why is there no interest in healthcare for the elderly?
Mom's is $330 a day plus I have personal caregivers with her 12 hours a day but she is correct that they let the residents do and say what they want which means they largely ignore them
Fights break out, folks fall and UTIs are rampant as no one is changed or taken to the bathroom every 2 hours despite the $450 a month incontinence fee
Whether at home or in a facility, dementia is a long tiring journey for everyone
Then comes one that was recommended from a friend of a friend, she seemed great also, very talkative, friendly, and recommended from someone who actually retired for the Police force as a dispatcher. Well I guess I should have checked her record!!! Bad mistake there, called in sick all the time or just did not show.
The third one I though well this is perfect!!! long term friend, also lived in my home twice trying to help him out. I trusted him so much we had a 12 year friendship and to me I considered him part of the family. Well again, After Mom was rushed to the hospital and we were advised by the doctor to place her in a home for her safety, she had started to fall and needed round the clock care. At that time I started to get my senses back, after 4-5 years of dealing with this your kind of brain dead. This time I realized that my dear friend had purchased his Gas, Beer and Food Even tools off of Mom's credit card.
She is now in a very nice home. I hate that she is not with me but I know its best for her. We are so fortunate to have found the place that we did. I can't speak highly enough about the facility and the staff members, all of them are wonderful. I do worry sometimes because I see Mom fading fast and I don't know if its the disease or if she sees others that are way worse than her and she is becoming like them. It really bothers me. I hate this disease!!!! I don't want my Mom to live this way but I don't want her to die.
After a few months, being tired, from working, being away from my family. I had to make the decision for mother-her condition was not improving. There was never-ending situations with the home care staff. My mother and I was stressed. The AL facility is great, my mother is adjusting. I am trying to get my life back.
I think we as caregivers for our parents, want to do all that we can to keep them home and care for them. I am learning to have no guilt about the decision I made for my mother. I found that the time, and energy needed to care for my mother was greatly affecting me physically, and mentally. I love my mother with all my heart but I am physically and mentally tired.