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sboakes Asked April 2012

How do I get my elderly dad to face up to my mom's dementia and their need for outside professional help?

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?

ShadowChild1 Apr 2012
My father never could face the mild dementia factor but watched over mother. I know that I will have to eventually, but I think she is beginning to sense some problems. I hope I have support from my siblings, but I have promised mother that I will not allow her to be in a position that will cause people to pity her or find her embarrassing if I can avoid it. That seems to matter to her most after my father's death. Best wishes to you and your family.

waddle1 Apr 2012
Your story sounds like an exact copy of what I have experienced with my parents. My mother too was declining mentally and my father couldn't understand it. He thought it was stubbornness on her part. No matter how many times or ways it was explained to him, he couldn't understand that she wasn't doing things that aggravated him, on purpose.

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.

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nolansk Apr 2012
I agree with most everything that's been stated so far. Your Dad is blinded by his devotion to his wife and does not want to accept the fact that your Mom is totally unable to manage herself, let alone take care of him. At this point you really need to get your Dad and Mom both into an appointment with their Doctor (make an appointment by yourself with him first and explain the situation). Your Mom can accidently (and I'm sorry to be so blunt) KILL herself by eating too many sweets that overtake the amount of insulin in her system. Who does the family shopping? It certainly sounds to me that if your Mom is driving, she should not be at her level of Dementia. Having someone else bring food into the house could help eliminate her dietary "binges". Having your Dad hear directly from the Doctor that they both need assistance in the home may help bring his "head out of the sand". I had to do this recently with my Dad concerning my Mom and her medications. I live with my parents, am the eldest of 4 children and am the only person they have that they can depend on to take care of them on a 24/7 basis. You're in a sticky place, and I hope that you can find a way to get your Dad to see that they BOTH need help. I'd also contact your County's agency on aging, vs Adult Protective Services. Protective Services can cause more difficulties for you than you want to deal with since they look from a perspective of abuse rather than help. The Agency on Aging, or Elder Services is a better choice on the Government side. Also, Check and see if there is a Lutheran Social Services Organization in your area. If you have one, or something similar, they are an invaluable resource for getting help, Elder Day Care, in-home services, and hospice care. God Bless, and Lots of Hugs.

anonymous95109 Apr 2012
I agree with Jeanne and Jane. I just want to add that sometimes they do listen to their doctors...I hope that's the case with your dad. I just remember my parents insisting that they had to have Bayer aspirin. Didn't want me to buy a generic aspirin. I asked them, "What is it with the Bayer aspirin." They said, "Well, it's the #1 doctor recommended." Thus the advertisement that they had watched and believed for years."

JaneB Apr 2012
Since you know his doctor, can you get the doctor to say they must have the help? I know it helped my Dad hear it...the doctor is Smart and Knowledgable, with credibility that mere family members don't possess. Most are happy to "intervene" like this, if prompted. Good luck to you...they are so beyond lucky to have you and your husband pitch in like this!

jeannegibbs Apr 2012
I'll bet if you surveyed 1000 elders, 995 of them want to stay in their own homes until the end, and 950 of them want to do it with no outside help. As I'm sure your mother and dad both taught you, we can't always have what we want. Ah, but how to convince Dad that this truth applies to his situation?

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!

anonymous95109 Apr 2012
I like Ruth's suggestion. Other than that maybe it would be good to call adult protective services and have them make a visit and keep your name anonymous. If APS could review their situation, with your imput, maybe your parents would prefer your ideas to APS. Just a guess. You can talk with APS and decide what sounds reasonable. Hopefully, they have experience with these matter. Good luck, Cattails.

Ruth1957 Apr 2012
Well, since I am the "outside help" I do have a suggestion. Why not interview a few candidates, and bring the most agreeable one to meet your parents? One of the places I interviewed in this way didn't result in long-term employment as the man was very volatile and aggressive. BUT his daughter and wife told him I was the daughter's friend and had recently lost my job so they were helping me out by hiring me to work around the house. I had no idea they were using this tactic until I was there. It worked, though, until the man (who had fairly severe dementia) was left with me alone and did not expect this. That was an interesting and very frightening experience.... but... Sometimes once elderly people experience having help come in, they like it. It's the unknown they resist. A gentle introduction to both the person and the idea can help. An in home caregiver will encourage your dad to move around, to eat and drink, etc. If you choose the right person, they'll quickly bond and look forward to his or her visits.

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