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JimL1953 Asked May 2016

What can we do when parents will not allow help to be in the home?

Both of my parents age 98 have cancer. My dad has kidney cancer which is under control at the moment,while my mother has terminal ovarian cancer. We arranged for Hospice when my mom got out of the hospital. The nurse and Physical Therapist made some suggestions to make things easier and safer. All of the suggestions were done and now have been removed. My mother is very unstable on her feet,but refuses to use a walker. We put in a shower transfer chair which has now been removed. The only thing left is a raised toilet seat. They have refused to have the aids help. My mom insists my dad can help her shower. If she falls there is no way he will be able to help her. She will not let him leave the house. We made arrangement for an aid to be there. She nixed it. Yesterday they went so far as to not be at home when the aid was due. I get a phone call from a scheduler and of course being at work knew nothing of what went on. When confronted my father basically lied. My mother can be very controlling and my dad caves to all her demands. She will only let him leave if either me,my sister,or my wife is present. We all work so this has become a major issue. My dad has always been impatient and now being forced to stay home is angry and that anger is directed at me when I go to their home. They think nothing of canceling appointments last minute,but then demanding to be seen in days or just walking in without an appointment. My sister and I are at our wits end. We have talked with them and while we are present they agree,but the minute we are gone it is right back to their prior behavior. We don't know how much time my mother has left as she refused any tests. The doctors did say it is advanced. We just don't know what to do at this point.

JimL1953 May 2016
I had never considered speaking to my mom's doctor as they are out of the loop once VNA is in place. I have gotten to know my mom's doctor the last few years as my daughter worked in her office and developed a close friendship. Maybe coming from the doctor it would carry more weight and my mom would listen.

alzheimershouse May 2016
Went through the same situation and had my Dad doctor tell him and my Mom if they did not allow in home care and aids to come into the house. That he would recommend they he my dad put into a Hospital assist living. My Mom then ageed to have aids and nurse come two times a week to help shower and shave my dad. I talked to the Dr. prior to are appt. and explained the situation and he agreed to this. I also bought a Baby Monitor and put it in the living room. So far so good. Its been over a year now. Not manycomplains. I also started my own blog just to help me cope. Hope this helps. Phyllis

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Windyridge May 2016
Ah yes......It sounds familiar to so many of us. It's the tipping point time of bad reasoning but not legal incompetence. The caregivers can't force anything. I've been dealing with this for 5 years now.

You do all you can, all they will allow and that's it. In these cases it will take a crisis to force the issue. It's hard not to worry and to not fell guilty but ya gotta get over it.

freqflyer May 2016
Jim, be sure to wear a helmet whenever you feel the need to beat your head against the wall.... many of us here have those helmets ready and waiting.

I found out months later, after my Mom had passed, that she and Dad were helping each other up and down the stairs... Dad let it slip out that they had fallen quit a few times. I disliked those stairs anyway, and even worse with the basement stairs. Mom use to carry semi-wet clothes from the washer down to the basement to hang to dry as she didn't like using the automatic dryer a full cycle... where's my helmet !!

Another thing we need to remember, we are still just the "kids" and what do we know :P

JimL1953 May 2016
Thank you for your answers. My parents are of sound mind so yes they are responsible for any decisions. I feel as though I am just beating my head against the wall. It has gotten so I don't wan to answer my phone. I know it is a matter of time until something catastrophic happens. My moms legs are very weak. She fell over the winter and broke two ribs and her shoulder blade. They live on the first floor of their home,but going in and out is not elderly friendly.

Weeone May 2016
Experience with this same problem tells me that you will have to wait for a crisis.

freqflyer May 2016
Reading your post was almost like reading about my own parents who were also in the 90's. There isn't much we can do until a crises or two happens.

My Mom agreed to having safety bars installed in the shower, but she was afraid it would damage the tile. Forget about a seat in the shower, that was never going to happen. Use a walker? In what universe? After Mom had a major fall, she was shocked to see caregivers waiting for her at home. That lasted maybe 3 days and she shooed them out.

The second crises finally happened, a second major fall but this time head trauma that Mom never recovered from.... thus she was determined that she and Dad could live on their own, and she died trying to prove herself right.

Since both my parents were of clear mind, there wasn't anything I could do. I learned that when my parents made a decision, then they had to take on the responsibility of that decision. Even if it means sleepless nights for us and panic every time the phone rings.

If only I would have known earlier not to enable my parents to keep up their lifestyle, meaning live in a house that was no longer elder friendly [3 stories, bad floorplan for their age, yard work, etc].

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