My husband and I (both mid-50s) moved back to the area where my parents have lived for over 50 years to make it easier to help them out; this was about a year ago. I am their only surviving child and their only family within 1,000 miles. I've been filing papers, organizing medications, driving them to doctor appointments, cleaning their house. They both insist they want to stay in their own home until they die.
My mom's mind has been going downhill for about five years. She repeats herself often, cannot remember simple facts or instructions for even 15 minutes, chokes/regurgitates on her pills and denies it to her doctor, eats lots of sweets and drinks sodas and will not follow doctor's instructions on insulin injections and taking care of the diabetes, continuously holds her mouth crookedly, refuses to wear clothes that fit her properly, finally agreed to wear Depends but still regularly makes messes with bowel movements, loses bills and hides candy & junk food mail orders from my dad, etc. My dad says he doesn't understand why she does what she does, gets frustrated and angry and confrontational with her, always wants me to go to her doctor appointments with her so I can tell the doctor all that's going on (which I do), and seems fine with me helping out as I have. We weathered 7 of his hospitalizations (for heart pains or pneumonia) since we moved back, and then about 3 weeks ago he fell and broke his hip. He had a partial replacement and then was in rehab for two weeks. I've checked into getting them in-home care, especially for dad as he tries to get around and do ordinary things. Money is not a problem for them. He absolutely refuses outside help, saying that Mom can take care of him. But she clearly cannot! He has not been getting up and moving around as ordered by his doctor, has not been taking the pain pills as he can, doesn't eat or drink much (though I, neighbors, and church members have brought in food), and does nothing but gripe and complain. I came down with bronchitis the day after he got home from the hospital, and I've not been to their house in a week due to fever and coughing.
I guess what I would like suggestions on is how to get him to face the reality of my mom's condition, his condition, and their need for professional help. If I do nothing more, until another crisis occurs and he or she is totally incapacitated, is that wrong? If I push really hard, they might shut me out completely. Any helpful advice?
Is there any non-family person he is likely to listen to? Someone from his business life? A golfing buddy? A priest? A lawyer? ANYONE he might consider an objective outsider who likes him and whom he trusts? What about a professional? If he came along to one of Mom's appointments and the doctor talked to him privately about her condition, might that help? Or a medical social worker, perhaps from the hospital where he was treated?
He doesn't have to accept that she has dementia -- the D word is very scary to many of us. But he does need to accept that she cannot help her behavior and that being confrontational with her will not change anything for the better. Their remaining years together should be filled with love and compassion, not blame and shouting. Anything you can do to further that goal will be a huge contribution to their quality of life.
You moved closed to them so that you could help them. Great! But Dad is not really utilizing that great benefit to its optimum. Was he in a business profession where he'll related to return-on-investment, and "highest use" concepts? It is good that he is willing for you to accompany her to appointments. That is a great thing for a daughter to do, and not something that could effectively be hired out. Since they can afford in-home help, he should accept the help from you and your husband that only loving family can provide, and hire out the less personal tasks. You didn't uproot your life and move to run a vacuum cleaner! The time you spend with them should contribute to their emotional quality of life. Hire help for housekeeping, yard work (if that applies), and nursing care. You be the loving daughter, advocating for them and overseeing the help.
So much about what might get through to him depends on your father's personality and life experiences. What about a list of all the things that have to be done, with everything from "reminders about drinking enough fluid" to "cleaning up bathroom accidents" to "managing pills" to "going to doctor's appointments." Go over it with him (and your mother, if that seems appropriate) and see what else he can add. Then have columns to check the things he can do, the things Mom can do, the things you will help them with, and what would most effectively/efficiently be done by professional, paid help. Gently but firmly keep him realistic: "But Dad, when you manage your pills yourself you and mom aren't getting what the doctor intends for you to have." I have no idea if this task-by-task approach would be meaningful for him. If you think it might be, give it a try.
How has he taken it that you haven't been over for a week? Is he grumbling about needing your help? Are things more tense between them?
You are in a very challenging spot. My best wishes to you all!
He also got angry and resentful of her to the point that he would "slap" her occasionally and didn't see anything wrong with it as it was the only way to get her to "shut up".. (sad and infuriating!)
My parents did not make plans for the future. My impression is, they never discussed it between them. I think my mom (the planner of the two) had some ideas in her head. I don't think my dad would allow himself to think of the future. Your parents are also probably looking at things differently.
There are going to be things that they can't understand or don't want to. There are things that will need to be done that they are incapable of doing...including making decisions for one another. So, eventually you, being the only family around, will have to make decisions that they may not like but are necessary. But, from your details, I don't know that that time has come yet.
Know this...things will get worse. I think you're doing a marvelous job with organization and care currently and you are absolutely correct in thinking about the future. The time will come when YOU won't be able to handle everything x2. You/they will need additional help. I think eventually it will need to be outside of the house...but until that point, to satisfy them, you can investigate in-home care. That's good that money/cost is not a problem. Many people don't have that option and a facility is their only option for getting help. I would explain to them that you need help and that's why you want their help in interviewing in-home caregivers, if you want to go that far. At the least you might want to seek out information as to what is available and keep it to yourself. If something gets worked out in that regard, for the first month or so, you can make sure you are there when the nurse or CNA is there, until they get to know her/him.
Things will get tougher for your parents and you. (You can use this time to prepare mentally too.) You will more than likely have to make tough decisions and experience things you haven't had to face before. The view will probably become difficult to look at too.
To answer your question directly...there will come a "tipping point" (which I don't read in your comments has arrived yet) when you or they can't do this anymore as it is being done. A death may precede this point and lessen the weight. Currently, due to your attention, things are pretty balanced, but it sounds like there are some early signs of that balance is starting to go. Remember there are several people to consider here...you, your parents and your husband. When doing things as they are being done becomes too much for the majority, then it will be time to be more aggressive. Until then, I think it is fine to..."do nothing more."
Good luck and I wish you and your family...peace.