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Topic I wish I knew how to get through to her :( Go to previous topic Go to next topic Go to higher level

By overwhelmedinFL On 2010.02.28 19:10
My mom continues to fall. She continues to get weaker. We are so lucky nothing is broken yet. The ALF told her a while back that if she fell again because she refuses to ask for help and she continues to walk away from her walker...that they would call 911.

So two Fridays ago she fell, she hurt her knee, they called 911...she spent 5 days in the hospital with me there 6 hours a day...(12 the night of the ER) so I would meet every doctor possible..all while trying to be a mother two my young kids and a wife to my husband. At discharge they tried to send her to a skilled nursing facility for rehab... I fought to not have her go...she has been through tons of rehab and doesn't do as taught... My dad was in rehab due to a hip he broke on xmas eve...we just fought to get him back to the ALF under hospice care... I JUST GOT THEM BACK IN THE SAME PLACE.. I just started to breathe again.

Why does she continually keep trying to jeapordize that? I know it is part of the PD. She does not have dementia that I am aware of.

They keep finding her on the floor and she lies and says she was doing exercises.....does she think she is kidding them?

Then today I was over at her place visiting...I told her I got a call the other day about another fall. The nurses put an alarm to sound on her chair and in bed when she goes to bed. They cannot monitor it across the facility but thought the sound would trigger her to think twice before getting up

PUSH THE DARN BUTTON AROUND YOUR NECK...use the services that you (and we) pay for. Mom chose to go to the ALF... this was not forced in any way by me or my siblings or any other family member or friend. today I told her... "mom, I cannot have you jeapordize what we fought so hard for. I cannot have you and dad separated again. You will not see him if YOU end up in rehab (because dad cannot be transported). If you fall and break your hip it will put ME over the edge" I told her all these things with tears in my eyes and she laughed at me. SHE LAUGHED AT ME and said she would not do it again.

Not two hours later I got a call from the head nurse that mom was found without her walker, in the kitchen making a bloody mary for dad. Not only that, but in order to get up and do that she disconnected the chair alarm so it would not go off.

I was so mad and hurt. She cannot get free passes on everything because of PD. I called her...told her the nurse called me and mom was mad. I told her that I don't even want to call her anymore because I know she will try to get up and find her phone (she never has it with her and she gets up without a walker to answer it...she is the type that wants to answer it on the first ring). I told her I know her crazy lifestyle change in the last year has got to be insanely hard and I cannot fathom what it does to her but that she was now straining her relationship with me.

I don't know what else to do besides hold our relationship over her head. Something has to give.. I love my mom. She is a saint. She has never been like this... she was a total softee that cried all the time and now I don't even know her anymore (as I am sure she does not know herself either).

bring on the feedback... I am at a loss. I feel bad for having to be mean. They have mentioned "kicking her out" but then they tell me they are just doing it to get her to "behave and ask for help". We cannot move them.

I am sure my post is all over the place...I am pretty emotional now.

<just a bad bad day :( >

By lostdaughter On 2010.02.28 23:42
You have NO idea how familiar all this sounds. Your post sounds just like what my own mom does. She will promise to do or not to do something then turn right around and do whatever she wants. Right now she's in NICU due to complications from elective surgery she was hell bent on having. She keeps trying to get up yet it's all a nurse can do to move her from the bed to a chair because she's so weak. I believe my mom does have some form of dementia because she sees people who aren't there, sometimes thinks she's at home, insists she needs to come home to clean the house (which she couldn't do before surgery), etc. It does no good to try to reason with her. That only gets her agitated and defensive. Annwood, who endured PD caring for her husband, says you have to treat them like small children. That doesn't work with my mom. She gets defiant and does things for spite. A few weeks ago her sitter put her on the commode and stepped around the corner to give her some privacy. When the sitter didn't hear anything after a couple of minutes, she went back into the bathroom. There was Mom, standing on the toilet seat, pulling wallpaper off the wall. I'm at my wits end as well and have been for some time. The only way I know of to keep mom safe is to have someone sit right on top of her constantly and that's not an option due to finances. My mom is going to a skilled nursing facility for rehab if she ever gets out of the hospital and I know that is going to make her furious. She does not seem to understand why she can't do whatever she wants. I'm hoping she won't be allowed to come back home, for her safety and my and my sister's sanity. My sister has tried in every way possible to accommodate Mom and Mom now expects everyone to do whatever she wants. Unfortunately, I have no suggestions for solutions to your problem but I wanted you to know there are others who understand and care. The only suggestion I have is for you to let go of the guilt - it does no one any good and only makes you feel worse. You have enough to deal with without carrying that around with you. By the way, my mom wouldn't use her med alert necklace because she didn't want to be embarrassed, or so she said.

By caregivermary On 2010.03.01 11:13
Believe me there is no way to reason with her, threaten her, or continuing to get upset with her. You are the only one who is listening. Give it up-I don't mean this in a bad way but I know when you do, you will feel better.

You must take control and do what is best for the overall situation. Your Mom is not in a position to make the decisions anymore. That is very sad but it is the way it is. Of course, you could just let things continue like they are and understand you tried everything you could do. Do not let guilt take you under. We are all often fooled by some little thing that convinces you everything is ok but it really isn't.

Not an easy place to be and others here will have some good input.

Take care.

By annwood On 2010.03.02 09:46
I totally agree with CaregiverMary. At this stage of PD there is absolutely nothing you can do to get through to your mother. It is impossible for her to remember your instructions and you are wasting your time arguing with her. She just doesn't have the mental faculties to retain the information, to evaluate risks or to understand cause and effect. You are just making yourself more stressed and upsetting yourself needlessly. Your mother will not even remember that you are angry with her. About all you can do is make certain that her environment is as safe as possible and accept the fact that there will be falls. It is just part of this terrible disease.

By Mary On 2010.03.02 16:18
overwhelmedinFL, I don't have much to add to the wonderful advice that you have already been given except to say that I feel your pain and frustration. I have walked in your shoes. There is no black and white answer. You just keep them as safe as possible and don't make yourself crazy trying to reason with your mom. For some reason, they get to a point that they cannot be reasoned with. Hang in there, honey! Hugs and blessings, Mary

By overwhelmedinFL On 2010.03.03 13:24
Thank you all so much for your support. I have been trying to distance myself a bit from the situation. I don't go there every day; she will begin to expect it.

It's so hard because she is so different. My mom would never have laughed at me. I am so sad sometimes at how different she is.

Can you all give me any advice on how to get the administration and nurses at her ALF to understand more that these are not things she is doing on purpose necessarily? I always assumed it was a cognitive issue but you will never guess what the NP at our movement clinic told me/mom. That this was not just a cognitive issue...It was probably more of mom consciously fighting against the disease because she is mad.

Then I made the mistake of telling the head RN that at the ALF.

Mom was threatened that the next time she fell due to her not using her assistance tools and/or calling for a CNA to help her that they would be calling 911 and sending her to the hospital. They did that three weeks ago. She spent 5 days in the hosptial and the doctor tried to send her to skilled rehab. I fought that because she had no injuries from the fall and she has had continuous rehab at the ALF and it keeps getting cancelled because she does not improve.

I have to now tell the nurses and admin that the NP was insane and that mom is NOT doing this on purpose and that they should not call 911 unless it is necessary.

Any other input? You should know that I really like the ALF and feel it is the best place for her and dad. They truly do care for my parents but I think they have not had first hand experience with advanced PD patients. I was so surprised at the hospital how many of the neurologists, regular MDs and nurses seemed clueless about PD.

Thanks again!!!

By Mary On 2010.03.05 17:06
I also was amazed at how the medical community treated Parkinson's Disease. I felt I knew more than some doctors, nurses and therapists through this forum and my research. However, when you came across medical personnel that were familiar with the disease, they stood out most definitely and more than likely received a big hug from me. When my journey caring for Dad ended, I felt as though I had earned a PhD in Parkinson's on some level. I would be curious to know if those with Parkinson's Disease are ever asked questions by their doctors so the doctors can learn from them. Hugs and blessings, Mary

By LOHENGR1N On 2010.03.05 19:33
Mary, Yes, but I've been fortunate in dealing with Medical staff from the A.P.D.A. information and referral center at the Boston University Medical Center @ The University Hospital, Their Occupational and Environmental Medicine Program to my Neurologist and Internist. We have always maintained an open and two way dialogue concerning medicines, side effects and effectiveness, dosages. Concerns as to mobility and problems that could affect ability to live alone. But then maybe I've just been lucky to be in the situation where this staff is involved in a teaching and learning environment, more open to improving their craft? As I've always said We owe it to those Who follow and to Ourselves to learn, educate and improve understanding about this Disease. Plus it helps not knowing when to keep my mouth shut lol. Take care, best of luck and hang in there.

By lvmymom On 2010.03.06 19:46
My mom was the same, it seems like ages ago now. Very frustrating. You have to put your own spin on it to make sense out of it and to appreciate it.

I found that I looked at my mom as someone who refused to give up. Get the caretakers on your sided, instead of this turning into a struggle. That is not good for anyone.

Her determined ways will keep her going in the long run. My mom broke both hips, both arms, her jaw, and stapels in the back of her head. It was not an easy road. Yes, I agree with the doctor...this is their way of saying NOOOOOOOO.... how hard it must be to give-in.... think of that. Think of your mom as a warrior. She is not giving in.

She will not win. You know it and so do the caretakers and so does she. Would you be happier if she just sat in a chair and was misserable, depressed and safe? In a way YOU would be less frightened, YOU would be more secure and YOU would sleep better ... but your MOM would be wounded and she would fee like she gave up.

Give her acknowledgement that you admire her will. You respect her desire to LIVE her life her way. You hope you have the will and the gumption to be just like her if this hits you ... but let her know you are having difficulty sleeping. You are worried all the time. Tell her together the two of you can figure out ways to keep her from falling. You can both learn and celebrate the success.

For example, my mother fell because she'd freeze ... and her top half would cause her momentum forward and she'd fall ... with and without a walker. So we would count with each step... that helped. We'd count to four,ONE two three four...ONE two three four...ONE two three four... it helped for a while. Also when she'd freeze she couldn't get back to the walk ... so we say "Step over the cat"... when she felt she was taking a step over a small animal sleeping she could get going again... this helped for a while.

We were always finding ways together to make life "work" for her. Make her "able" .... it was actually kind of fun. But she continued to do too much and would fall and we'd be back in the hospital getting something set ...

Pay a little more for the caretakers to walk with her to and from meals ... or have her push your dad's wheelchair. His weigh will help slow her down and keep her from pushing forward and falling. He can stop it if it starts to get away from her as well. It might be nice for both of them

More handrails in the appartment will be good for her. See if you can make the drawers more easily opened and closed. See how you can make getting in and out of bed easier ... there are wonderful poles (floor to ceiling) that are nice to grip and help with standing, dressing, etc... One next to the toilet is a good idea.

Eventually the disease does catch up. My mom is in the final stages. But I still continue to do things to make life easier. I don't really want to take you there with this note, because it is not pleasant ... but it is my mother's persistant will and need to prove the disease wrong that keeps her going.

I know it is hard for you and you are worried all the time. But turn it into a proud nervousness ... like your children snowboarding for the first time down a steep mountain ...

Plus they learn to fall. She will learn how to fall. The caregivers should know that. If they don't then they need some training. You might want to talk to her neurologist and/or the Parkinson's Disease Society in your community about visiting your mother and father's assistant living facility and doing some training. It might be nice to train not only the director, nurse and the caregivers(which should be mandatory) but also invite the residents ... if they want to come. That way they can understand what your mother is going through. You and your parents will learn too...

I've gone on too long. Sorry. I just wish you the best of luck and I send you strength and peace of mind. Go with the flow...don't fight it ... help her make sense out of it ... help her to remain the strong woman she want to remain to be.

My best to you.... J.

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