My parents have been active and in very good health until the last couple of years, living next door to me. My mom developed dementia mostly caused by strokes, resulting in personality change and lack of motivation to follow through with tasks on her own, for the most part. She was also quite ill with cancer, but responded well to treatment (localized radiation finished 6 mos. ago), is in remission, stronger and normal weight. She would be quite happy to spend the day in her pjs, sitting and looking out the window.
We are fortunate to have part-time caregivers to help with some of the cooking, personal and household tasks. One caregiver is excellent, gets Mom to help with cooking and simple chores, has her do her exercises for strength and balance, supervises her as she does brain training on the computer. The back-up caregiver unfortunately doesn't get Mom to do much (doesn't seem to do much herself), often doesn't make sure Mom gets dressed. (She says she is not allowed to force Mom to do something...)
The caregiver issue is frustrating (there is a shortage of good help here), but the main quandry is how much to expect, ask, motivate, prompt, etc., my mother to do. She SAYS she would like to do more, "knows she should be doing things" to help my dad, my sister and myself as we have picked up the load. But because of her loss of executive functions, she doesn't have the desire or gumption to get up and do so.
My dad is very patient and loving, also unwilling to make her mad by asking her to do something herself. His health has suffered with stress over Mom's health, and now having to do most all the household chores in the hours when no one is with them (heating up food, clearing and washing dishes, getting up to get something for her, even cleaning her commode until she decided to use her bathroom). It may not be a huge amount and caregivers, my sister's family and myself help some, but when we are not there I know the burden is on him. Mom usually either stalls when he asks, or gets angry at him.
He is an insulin-dependent diabetic, and his glucose control has become quite erratic, partly due to later mealtimes when they are on their own (less often recently). Also the extra work and stress has affected this, and he has become more depressed and fatigued.
I tried making a chart with goals and tasks my mom could do, thinking checking them off would inspire and motivate her, also remind her of things that need to be done. This went by the wayside, but I might try it again. I had hoped Mom having a routine would help her remember, but guess I will have to spend a lot more time to get this to work. I know I am going to take flack for this and be called a slavedriver by her, which is not easy. She has been hardworking and energetic all her life until now-- I know she is not being lazy, but just can't motivate herself on her own.
Part of me thinks I should just let her sit in her chair and do what she wants, yet I know this isn't best for her health, physically or mentally. I think she enjoys the feeling of "doing something" herself, even though she mostly laments the loss of her more capable, younger persona, wishing things could be the way they used to. If it were just her affected, I might be inclined to do so, but I am concerned for my dad, as well.
Does anyone have any experience or suggestions with this? Thank you.
Your Dad needs 24/7 support now, that is why naheaton suggested assisted living. It is getting to hard for him to handle both the stress of Mom's issues plus the activities of daily living. Also, most ALFs have lots of activities and social interaction that would be great for both your Mom and Dad.
You could try more in-home care - tried that myself but ran into the same issues as you. Some were unreliable, there were scheduling issues, and times they could not show up. You can use an agency, but that gets expensive too.
If you are committed to "aging in place" for your parents, you may want to contact your local ALFs and speak to the director and ask about aides who can also help patients with cognitive issues. Also, your doctor can write a prescription for physical therapy for your Mom. She would have to go to their facility unless she has had an injury or hospital stay recently. Is she able to get out?
In the last year I have seen more decline in my Mom. She cannot handle overstimulation and becomes frantic when someone tries to get her to do something - even when it is for her own good. So I understand what you are going through.
My husband and I sold our home and moved down here specifically to help; I am not working, and only in the last couple of years have had to step in as we thought I would. My sister and I have a pretty good division of labor (finances, cooking, transportation, meds, etc.), which is a blessing. Our understanding is that my dh and I will move into Mom and Dad's home when needed, which hasn't been yet but may be soon. Mom and Dad do lament the loss of their independence in things and keep telling us they don't want to be burdens on us, which is also why we haven't insisted on taking over things until we see they are needed.
When I say they are doing well for their age, (particularly my dad), it is an understatement. His grandma lived a very active, mentally sharp life until she died at 103, and he may be on the same track, unless his diabetes worsens, which is our main concern. Mom uses a wheeled walker for balance and has gone to PT for balance and strength, recently to work on her dominant hand, which was either affected by stroke or tumor and does not fully work. These are discouraging to her, I know. I would just like to encourage her to try to find a sense of worth and capability in doing some tasks and/ or hobbies, even though they aren't the way she used to be able to do things. If this is to happen, it probably means me making the commitment to spend more time trying to motivate her or get her into a routine where she is reminded to help Dad more. She is not that antagonistic, but the "slavedriver" term will come up, and I need to have a good sense of humor and a bit of a thick skin going into this, I know.
I think that you have hit the nail on the head when you say, " If this is to happen, it probably means me making the commitment to spend more time trying to motivate her or get her into a routine where she is reminded to help Dad more."
You moved close so you could provide more help. Fortunately it wasn't needed as much as you expected at first. It sounds like the time has come. Perhaps it isn't necessary to move into their house yet, but more active participation may be needed.
It may also help to shift expectations a bit. Maybe the dinner dishes can sit until the the daytime aide comes in. Maybe the grandkids can take turns helping Gramma do them each evening, and then play a game of checkers with Grampa. Maybe you don't live with them, but you do eat the evening meal with them, as a family, once or twice a week, so you know it is on time and appropriate for their needs, and you and Mom cleanup together afterwards, or she keeps you company while you do most of it.
They need assisted living. It sounds like you are positioned to provide that in their own home, if you are willing to take on that role. Hire more helpers -- AL facilities have a staff, not a single person, to provide assistance.
It sounds like you will make a conscious decision about how to proceed, and not just follow the path of least resistance or wait for a crisis. You are going a great job in the caregiver role. Keep it up!