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By lostdaughter On 2009.01.24 13:07
After 3 weeks of sister sleeping on the floor in mom's bedroom, having a sitter here during the day, & neuro adding 8 mg of Requip XL to her daily meds mom seemed to be back to where she was before her fall before Christmas. Sister agreed to quit sleeping on the floor if mom would promise to call her on the two way radio if she needed to get up. It wasn't doing a great deal of good for sister to be in the floor anyway because she's so tired that mom was getting up & sister never heard her. They're both very resistant to change so I've made suggestions but haven't pushed anything on them. Sister still refuses to accept that this is only going to get worse - keeps saying maybe in a few months mom will get back to being able to stay by herself. Rather than waste time & energy arguing I keep hoping sister will reach the point where she can accept reality.

Thursday morning mom fell & busted her head. She had the phone & two way radio both in the bed but chose not to use them. Sister & I both lost a day at work, spent half the day in the ER & the other half cleaning up blood & trying to keep mom from wandering around the house. Mom's attitude was indignant - she wanted to go to a walk in clinic instead of the ER. I didn't give her a choice. I want all her falls documented at the same facility & her condition checked thoroughly. Mom didn't like the fact that I was mad - said there was nothing wrong with her going to the bathroom. Sister slept in the floor Thursday night & was up most of the night because mom couldn't sleep in spite of taking twice twice her normal dose of Elavil. Sometime in the wee hours of Friday morning mom managed to get up & take the majority of her meds that should have been spread through the day. She claimed she thought it was morning but had no explanation for why she took more than just her morning doses. The sitter said she was okay yesterday other than being unsteady on her feet. Last night she almost fell & when I grabbed her arm she drew back like she was going to hit me. This morning she needed to get clothes out of the washing machine that weren't there & insisted sister said someone was knocking at the door.

Mom has always been in bad shape for several weeks after this kind of fall & hasn't seemed to fully recover from the last few. The extra dose of Requip XL doesn't seem to be helping her balance at all. Even when someone is sitting in the room with her she tries to get up, she insists she has to get up, & gets mad if we insist she use a walker. Taking care of her wouldn't be near as hard if she would let us help her. It isn't that she forgets she can't walk. She wants to be allowed her independence & sister & me to deal with the consequences. She has no appreciation of our circumstances. I know that's the disease but we can't cater to her & hold down full time jobs at the same time. She eats it up when she goes to the ER & they say things like "bless your heart". That makes me want to scream because she has somebody at her beck & call 24 hours a day but refuses to ask for help.

I know there are no answers. Sometimes I feel like sister & I are just prolonging the inevitable, that one day one of us is going to find her dead in the floor because she "didn't plan on falling" as she always says. I guess I just needed to vent & get some of these thoughts off my chest.

Thanks to all who post & support one another here.

By annwood On 2009.01.24 13:45
Oh how I remember the total frustration when it seems as if the person is actually working against your efforts!

This is not going to get better and I think somehow your sister will come to realize this. Your mother really is unable to understand although she may lead you to believe she can. The falls are inevitable and she will no doubt experience many more. I have seen my husband falls 4 or 5 times in one day and when you asked him why he tried to get up he would say he didn't know. I believe that was true. You need to understand that you can only protect her so much and not feel guilty when it happens.

A couple of suggestions - they make a pad that lies under the sheet. It has a sensor in it and that goes off when the patient attempts to get up. It is portable and can be put into a chair during the day. You have to position the connection in the middle of the back where the patient can't reach it. It will allow your sister to sleep. It is time to put all of your mother's medications somewhere where she can't get to them. This can be a locked box by the bed or a locked cabinet. She is no longer able to take her own meds. Have you considered a bedside commode?

Stay strong - this is the hardest part of caregiving. Remember that your mother really doesn't know what she is doing. Some pre PD personality traits may come to the forefront but that again is the damage that has been done to the brain. Her reluctance to give up her independence in the face of obvious inability to care for herself is a form of denial. Please be careful because she may actually strike you. Safety can become a real concern for the caregiver but usually the patient is too uncoordinated or feeble to actually harm you unless they catch you off guard.

It is perfectly ok for you to rant and rave on this board. It is healthy for you to do so and we can all take it!

By bandido1 On 2009.01.24 14:43
lostdaughter: Whenever I read posts like yours I am reminded of how lucky I am. As a stage 5 patient our creator has seen fit to allow me retain most of my mental
faculties while offering advice/ help and sometimes an injection of humor into my posts. When the apparently inevitable changes begin to be evidenced in my posts I hope any or all of you will advise Jim, administrrator of this site, that I have gone around the bend. Meanwhile adding to annwood's good advice you might try hanging a cellphone around mom's neck and teach her how to use the ICE (In Case Of Emergency) feature now available on almost all models. Bob C

By lostdaughter On 2009.01.24 16:46
Thanks to both of you for your kind responses. Mom has a cell phone & a medical alert necklace. She refuses to use the necklace because she wants to make the decision about who to call for help. She won't wear the cell phone around her neck but can't remember to carry it with her or it flies across the room when she falls. She was falling 4 or 5 times just about every day before we hired a sitter. Most falls only resulted in bad bruising or abrasions but I've seen her fall several times & been amazed she didn't bust her head or break a hip. This last fall is the second time she's had to have staples in her head. She broke a wrist because she was hell bent it was her responsibility to make sure my grown son got up for work on time. In spite of the fact that he didn't expect her help she would stumble into my part of the house & up a flight of stairs if he didn't answer his phone. That's what she was doing when she broke her wrist. I told her after that incident that she could get herself to the hospital if she continued to make what she wanted to do more important than her personal safety. I've suggested a portable commode & will talk to sister about that again. I looked at bed alarms on the internet & will ask sister if she can afford to split the cost with me. I'm also going to get a rail to put on the side of the bed. Mom is resistant to any changes that aren't her idea but maybe she'll use the potty chair if we don't include her in the decision.

By happygranny On 2009.01.24 18:11
I come to this site to ask for advice and I can't help but realized how rough some people have it. Lost daughter, you are doing one of the most difficult jobs imaginable and my heart goes out to you

Maybe it will get that difficult as my husband's health deteriorates, but so far, things are manageable.


By Tara On 2009.01.24 19:07
I just need to second what "happygranny" said -- this makes me realize how good I have it with Dad. Apart from resisting me on the Power of Attorney issue, he's been very compliant.

The one encouraging thing that you said, Christy, is "I told her after that incident that she could get herself to the hospital if she continued to make what she wanted to do more important than her personal safety." RIGHT ON, SISTER!!! There is definitely a need for a heavy dose of toughlove here. Whether or not it's "the disease talking," boundaries have to be drawn in terms of responsibility and what you will and will not tolerate.

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