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Topic At the end of my rope Go to previous topic Go to next topic Go to higher level

By lostdaughter On 2009.06.14 09:46
I'm not asking for advice. I just need to talk to people who understand.

The past couple of weeks have been a nightmare and I haven't even been the one to deal with the worst of it. Mom has been hallucinating more and more, mostly all during the night. She fried chicken all night one night, took care of a baby another night, on and on... Bless my sister's heart, she's been up all night every night with her and trying to work during the day. She can't keep that up and I know myself well enough not to even try. I can't function during the day and stay up all night.

She can't walk 3 feet without falling but we can't keep her in a chair or the bed. Turn your back and she's up. She has to do this or that or something else. It doesn't matter that someone is sitting right in the room waiting for her to want or need something. She's going to get up.

She fell early last week and scraped several layers of skin off her arm from her elbow to her wrist. It was bandaged until yesterday when she decided she couldn't stand the bandage any longer. This morning she was up before 7 AM and fell again. She hit that arm again, scraping more layers off and now about 3 to 4 inches of a vein is exposed. My sister wanted to take her to the ER ourselves and when I said we needed to call an ambulance she had to get Mom's approval before she would agree.

I'm trying to help but have no patience with my sister thinking Mom is supposed to make the call on what to do about every little thing. My nerves are shot and I know my sister's are as well. We've been in the ER 4 times in the past 6 weeks. Mom is black and blue all over from falling. She has scrapes and cuts all over her body. Mom and sister both still think the neurologist can prescribe something to help with all this. My sister wants to keep Mom at home because she's at herself part of the time and she wants to know we did all we could. I think we've done all we can and she'd be better off in a nursing home where she could be watched 24 hours a day. We can't afford 24 hour in home care and Mom needs to be sedated when she starts trying to get up and move around. We can't deal with that at home and still work.

I'm sitting here procrastinating about going to the ER. I'm expecting they're going to patch her up and send her home. I always thought medical personnel had a responsibility to take action when it was clear someone is a threat to themselves. It appears not understanding or appreciating the consequences of getting up when one can't keep from falling doesn't fall into that category.

I have POA and can step in but I guess I'm using my sister's desires as an excuse not to take action. I keep waiting for her to realize we can't keep this up and she can't bring herself to see that. Right now I'm hoping and praying the doctors will step up and help me.

Thanks for listening and understanding. I pray no one else has to go through what we've experienced the past few weeks.

By Pearly4 On 2009.06.14 10:25
I know how your feel oh so well. My husband and I wait for "the big one" every day so that we don't have to make the nursing home decision. I feel like a coward and yet, I feel like we've dealt with and been charged with everything so far and at this point, I'd just like someone else to make that call this time! And no one is going to -- just this weekend, my brother who "babysat" for the weekend told me he didn't know how much longer her visits could go on -- she can't take care of herself anymore after all! Hello! What do you think we're doing up here?! Yes, you have to supervise meds and help her in the mornings and listen to her nonsense 24 hours a day. And sometimes she wakes you at night because she's confused and thinks she should have pills. Deal with it! Or, you tell her she needs a nursing home.

But back to your situation -- I think having 3-4 inches of exposed vein is grounds for ER visit myself but it's your call. Be careful you aren't going to end up being accused of elder neglect and advise your sister of same. I found with my kids that physicians were not willing/able to admit unless I demonstrated I had lost control of the situation. Never really involved the same things, of course, but lots of illness and breathing problems. If I acted like I was capable, they allowed me to do it. Try melting into a puddle of tears in the ER! Or, take the doctor and aside, throw yourself on his mercy, and ask for his assistance - maybe she needs an evaluation for UTI or medication adjustment and he can twist her doc's arm into admitting her to work it all out. They can work wonders working around Medicare/Medicaid if they puts their heads to it. Once they evaluate, maybe they'll make the recommendation and your sister will go along with it.

Good luck and God bless - I guess it's all any of use can offer at this point.

By lostdaughter On 2009.06.14 14:09
Thanks for your kind words. I probably didn't make myself clear in my first post. Mom was at the ER when I was posting. She agreed to calling an ambulance and they transported her. My sister went with her and I drove over later.

They managed to pull the skin together and stitch her up. She has 10 or 11 stitches about 1/2 inch apart so the wound can drain. The ER doc said it couldn't be much worse but they sent her home with instructions to see her PC doc later in the week.

I dread the thought of being the "bad guy" but I'm going to talk to her PC doc about the fact that we can't keep her safe at home anymore. My sister and I have to work. Mom is going to hit the roof when I tell her she's going to have to go into a nursing home and I expect she'll try to convince my sister and brother to help her fight it. Not being sure what they'll do makes me nervous about taking on the responsibility for the decision. Mom has never had a mental evaluation in spite of the fact that we've asked for one. If she was getting out of bed now and then it wouldn't be so bad but this is an every night thing and it lasts for hours.

I appreciate you mentioning elder abuse. My sister and I have discussed that in the past. Luckily, Mom has always (so far) admitted that her injuries were the results of her falls. Her PC doc is also mine and he's known us for many years.

The ER nurse told my sister that putting Mom in a nursing home won't necessarily be such as bad thing and reminded her that the two of us have to take care of ourselves as well. I hope my sister can and will absorb that.

Thanks for being there and for caring. That, in itself, means a great deal.

By Pearly4 On 2009.06.14 18:31
Things are in motion then -- I know the time will come and I've told my mother than when our health and safety are at risk or hers is, that will be the point she will need to go to a nursing home. I'm sure there will be problems and I'm sure I'll hate the whole thing and wish I had never done it, but I know the time will come when I just can't do it any more. It's not a perfect solution but it sounds like she definitely has some safety issues and like it or not, that puts you and your sister at risk as well. My mom called the police once - luckily she was so far out of it, her complaints were easily disproved but it worries me. I will say I find most people (professionals, etc. ) are very sympathetic to the problem of false complaints.

At any rate, good luck and hold your ground. You'll still be caretaking even when she's admitted to a nursing home, it's just going to be different and hopefully you'll have more help!

By sooboo On 2009.06.14 23:05
Definitely start looking and find a place you like now, before you need it. Choosing a nursing home is not something you want to be doing in a crisis. I made the same decision with my mom (we did assisted living) and it wasn't easy. But, I was so scared that she would break a hip or something, I decided it we couldn't go on as we were. It turned out to be a good thing for us.

By susger8 On 2009.06.15 07:56
Have you considered getting a home health aide? My dad has a live-in aide (because I work and he can't be left alone). He gets more attention than he would in a nursing home. He doesn't need nursing care (yet). And he wants to stay in his own home as long as possible.

It's not cheap, but it's cheaper than a nursing home. It's actually less expensive to have a live-in than to get someone for 8 hours a day.


Edited to add: I just noticed that you have considered getting help at home but thought it would be too expensive. A nurse would be very expensive, but an aide can really do a lot and is less expensive than a nursing home. And a nursing home will not really give your mother as much attention as an aide. (Dad's been in NH twice for rehab after bad falls, so I know this from experience.)

By WitsEnd On 2009.06.15 12:41

One of the sad parts about Parkinson's is the falling. If your dad has dementia, the closer you get to the end where standing and walking are impaired--the more frequent the falls. That's not going to stop at a nursing home unless you agree to restraints. You can be standing right in front of him and tell him not to stand up and it won't do any good--he'll keep trying and fall out of bed if nothing else.

The best you can do is try and reduce your mom's injury from a fall (take away things with sharp corners, bed rails, etc.)

Good luck.

P.S. For what it's worth your getting her to call an ambulance was one up on me. I called the ambulance, it showed up and dad refused to go. I had to insist his mental state was altered and for them to take him.

By lostdaughter On 2009.06.15 15:15
Thanks to everyone for your thoughts and input. The hardest part of all this is the fact that Mom thinks she can still do the things she did two years ago. Her only concern after having her arm stitched up yesterday was that she won't be able to lay out in the sun. DUH!! She can't be out in the heat because she can't breathe. If she sits outside in the shade on a low humidity day she has to get back inside within 15 minutes and the house has to be kept like an ice box so she doesn't wheeze.

Last night she was up trying to walk around in spite of the fact that my sister and I both were at her beck and call. I get so angry when I'm standing right in front of her waiting for her to tell me what she wants and she proceeds to head out to do something herself.

I know Mom's falls can't be stopped altogether but feel she could be watched better in a nursing home. Most of her activity is at night when her hallucinations are really bad and she can't be reasoned with.

We've been struggling to pay for an aide during the day and can't afford to hire someone at night as well. Mom doesn't want anything to change. She won't agree to a hospital bed, won't agree to sleeping in another room where my sister could quit sleeping on the floor, won't agree to a potty chair, etc. She wants her life to stay status quo as much as possible and thinks nothing of the fact that all my sister and I have time to do beyond taking care of her is work. When she falls you can't pick her up without touching a spot that's either black and blue or cut and she yells and hits at us when we "hurt" her.

I didn't get Mom to call the ambulance. That was my sister who needed Mom's approval. If I'd been making the call, I'd have called the ambulance whether she liked it or not and met them at the door to warn them about her mental state.

I just don't know anymore. She's been to the ER 4 times in the past 6 weeks and has at least one doctor appointment every week. I'm not sure my sister or I can handle the responsibility much longer - physically, mentally or emotionally. This is taking a toll on both of us.

By Mary On 2009.06.15 16:19
lostdaughter, I feel for you and know one day I'll be in your shoes. I think that you are at the point where a nursing home is best for all and you shouldn't feel guilty. There comes a point where we are "used up" as caregivers and when we cannot keep our loved ones from harm. I do think it is a good idea to visit some area nursing homes and check them out. See how responsive staff is, are call lights on and not answered, are they interacting with their patients, etc. There are some very good past posts on what to look for in this forum. Each of us can only do so much. Caregiving is so exhausting and consuming. Some days I feel like being a caregiver sucks the life out of me. I want to be there for Dad and be in it for the long haul but I'm not sure I'll be able to do this until the end. I do dread the day I have to make that decision. In the meantime, I'm giving him the best life I can under his circumstances. Hugs and blessings to you, Mary

By WitsEnd On 2009.06.16 09:58
Terminal insomina goes with the Parkinson's. When dad went in the care home they insisted on sleeping pills. It was the only way to keep him in his bed at night. I would recommend you get some and start that right away to get you some immediate relief. Also, when dad slept during the night he was often better during the day. A healthy person can act abnormally if they are sleep deprived.

Also, you ought to know that the "sundowning" at night gets worse as the disease progresses. It will happen earlier, more frequently, etc. Thinking about a nursing home now is a good idea even if you can get her to sleep at night.

Good luck and hang in there.

By lostdaughter On 2009.06.16 11:01
Thank you, WitsEnd. Mom takes sleeping pills every night but still doesn't sleep. It seems all the sleeping pills do is make her more unstable when she gets out of bed. My sister and I have already realized that Mom is better during the day if she does happen to sleep a few hours at night. If and when she does sleep it's no more than 3 or 4 hours. That doesn't happen very often.

I so appreciate everyone's thoughts and understanding.

By WitsEnd On 2009.06.19 14:59
We had to try several different kinds of sleeping pills with dad and at different doses before we found out what would work. The higher doses of Lunestra seemed to work--but lower doses didn't. Ambien might as well have been breath mints for all the good that did for sleeping. Some made dad worse too. You might want to try some different kinds and doses to see if that helps. Also, I wouldn't be afraid to try the "habit forming" kind if any of them work.

You guys need some rest too--and nursing homes will definitely require something that will get them to sleep through the night.

By tryinghard On 2009.08.01 22:50
Dear Lostdaughter, I know exactly how you feel. I'm my dads caretaker and I get so infuriated when I'm right next to him and he struggles to get up to get a glass of water. I tell him over and over that I'll get whatever he wants and he ignores me. He's been living with us for a few years now and it is definitely getting worse. He acts like a 2 year old most of the time. He says his doctors don't know anything and he doesnt have to do what they say. They told him not to drink anything after 7pm to help prevent his bedwetting but he says he doesn't wet the bed and insists on drinking at 10pm. then I have to clean up the mess in the mornng or middle of the night when he wakes up. We have a home-aide for 4 hrs a day. too expensive for anything more than that and she's been telling me he's getting worse. The insomnia is getting bad too. But he'll sleep all day if i let him. I'm tired, frustrated and mad at myself for feeling this way. Hang in there, you're not alone!!

By LOHENGR1N On 2009.08.02 00:30
tryinghard, I don't have any answers for all the dilemmas You caregivers/partners face daily. I'm a patient, (was dx'd at age 33, got my 57th bday coming up in about a week and a half) from my view inside this disease I can empathize with your Dad about the Doctors! But they're only human and many times show it. As Parkinson's progresses our autonomic nervous system is effected more and more. This regulates systems that just function without Us giving thought to it, examples are breathing, blood pressure, heart rate, sweating, vocalizations and to put it delicately excrements (liquid and solid) and other functions of being alive. It's not that we've got a weak bladder that we necessarily go during the night. I at times try to speak for others who can't. Be it from dementia or loss of vocalization or whatever reason. Now before I get into hot water here let me say I'm not casting any criticism on any Caregiver/partners You're all the best and do everything you can to make life bearable and comfortable for your charges! I commend all of you for the loving care you give! We patients thank you with every fiber of our bodies!

Sometimes the Doctors have to be reminded of the Quality of life balanced against stupid things coming out of their mouths. (just ask my doctors they'll tell you I keep them in check lol). If my doctor told me nothing to drink after 7 p.m. I'd look Him straight in the eye and say.... Doctor, I'm dying from Parkinson's Disease, are you saying to deny a dying man a drink of water? I mean come on think about it Doc!

As for sleeping? We struggle against the stiffness trying to move burning energy, We tremor which burns energy. Side effects from med's dyskinesia, dystonia tire Us. We fall asleep or nap from exhaustion. I myself know I can't keep awake all day like I used to "normally". As long as one sleeps even naps there is no insomnia, just altered sleep patterns. I posted once a link to a site where a woman explained using spoons about Her illness, I reminded my pca the other day when She wanted me to go to the store at almost pill time. It's humid out! It takes me two spoons on humid days that which normally uses up one on cool days.

As I said I have no answers just the ability to give voice to these problems from a patients view. I hope I haven't offended anyone with this post, that wasn't my intent. I'm only trying to explain some of the maddening facets of living with Parkinson's both Caregivers and patients are dealing with daily. Take care, best of luck and hang in there.

By tryinghard On 2009.08.02 10:52
thanks lohengr1n. No offense taken at all. I know my dad is not doing any of this on purpose. And he is extremely frustrated. He used to be the one taking care of the family. Now he can barely walk. I get it. It get's to be too frustrating sometimes. He wants to do all the things he shouldn't(like trying to cut an orange for himself when I'm right there) but yet when I suggest to do the things his physical therapist or doctors suggest that he refuses to do. Thanks again.

By bandido1 On 2009.08.02 15:10
To my pal Al and trying hard: here are a few additional things we parkies find to be a difficult experience as the clock ticks away!

Opening pop top cans.
Turning the pages of newspapers and magazines.
Reaching remote parts of the body including toenails and the place where the sun don't shine.
negotiating a walker around miscellaneous articles strewn about the rooms.
Moving through narrow doorways.
Getting in or out of any automobile.
Avoid crashing into any one of our three dogs.
Spreading peanut butter on a slice of bread.
Dictating this reply through the voice recognition software that frequently doesn't understand me!

Hanging in there! It may get worse. Time to take a nap. Bob C

By tryinghard On 2009.08.02 19:38
ahhh Bandido1 I find your humor most comforting!!!! A nap sounds wonderful! Doubt I will get one anytime soon - oh well. I have to say reading some of these posts and writing the few that I have I finally feel like I'm not alone. Thanks!

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