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Topic Question re: home health care Go to previous topic Go to next topic Go to higher level

By lostdaughter On 2009.06.29 13:27
Have any of you experienced health care workers not seeming to realize your PD patient wasn't capable of making their own decisions? Mom has a home health nurse who sees her at least once a week & her PC doc had the same agency send out a social worker to assess her situation. Her PC doc realizes her roaming at night, having hallucinations & constant falls are more than my sister & I can handle. Mom seems to be able to pull herself together enough to give the impression she can make her own decisions & the home health agency never contacts my sister or me. I have POA but haven't used it because my sister doesn't want to do that unless absolutely necessary & the fact that I get the impression the home health workers think Mom's much better off than she really is. Mom already thinks I'm out to get her. I guess my real question is shouldn't the home health care workers be talking to my sister & me since we're the ones trying to take care of Mom? What concerns me is that Mom tells them what she wants them to know & even lies. Without talking to anyone else they aren't getting a clear picture of what we're dealing with.

By WitsEnd On 2009.06.29 13:54

You need to initiate your conversations with the Home Health Care people. When you say their workers are coming out, the question is who? Is it the health aid to help with bathing? Physical therpist? Nurse? Social Worker? Home Health Care agencies vary in how good they are and how bad they are. Have you checked to make sure you have a good one? If you are comfortable you have a good one, then call and ask to speak to the Administrator there and tell them about your concerns. Ask which social worker and which nurse are assigned and ask to speak to each of them too. Let them know you want them to call you from time to time and let you know how she is doing and what is going on with her.

When my mom was sick we had a personal care home, a hospice and a home health care service. Because of her circulatory problems and the hospice's formulary, they didn't want to do the wound care on her legs that I wanted. It wasn't anything fancy--just a more expensive cream and bandaging. Home health would do the bandaging--but wouldn't do narcotics for pain so we wound up both with hospice and home health care using a dual diagnosis.

The morning of the day mom died I received only one phone call of all three groups....and that call was from the home health care nurse. They have a different perspective and can be very helpful. I will always be grateful to her because she gave me the chance to get mom to the hospital and to tell her goodbye. It always made me think though too because I should have gotten 3 phone calls that morning--not just one.

By Mary On 2009.06.29 15:28
In the beginning, I made a point of being home when the nurse, therapists, etc., came to visit Dad so I was in on what was being said and discussed. Later on, I'd attend visits if I had a concern. That worked real well.

By lostdaughter On 2009.06.29 16:24
Thanks to both of you for your responses. There is a nurse coming out to check a gash in Mom's arm she suffered in one of her falls. The social worker came last week & I thought she would contact my sister or me one before her visit but that didn't happen. The purpose of bringing the social worker was to try to get us some help at night so my sister doesn't have to be up all night trying to keep Mom in bed & to get us some respite help. Mom doesn't really want either of us there when home health comes. She wants to control what they're told & if we say something she doesn't like she tries to make it appear we're lying. That's what I'm having so much trouble understanding. Can't these people look at the bruises, scabs, etc. & see that she needs more care than we're able to give her & work full time? My sister is killing herself trying to make sure Mom gets to stay at home as long as possible. She continually says "maybe if we do this" or "maybe if we do that". Mom tells everybody she's planning to get better & be able to stay alone some. In the meantime the situation is getting harder & harder to handle. Sometimes I wonder if I'm the crazy one. I seem to be the only one who realizes this is only going to get worse. Mom has at least one doctor appointment a week & we've taken off so much taking her to the ER that we can't keep taking that much time. I'll try to contact the social worker this week. How much good it will do I don't know. Week before last we saw the PC doc & afterward Mom accused me of "getting to him" because he told her he was concerned about her situation & he feels sister & I need some relief.

By Mary On 2009.06.29 16:34
lostdaughter, this is all so very hard. Let us know how your talk with the social worker goes. I hope he can get things straightened out for you. They can be a good source. I also know first hand how hard it is to work fulltime and care for a parent. There are times I take off so much time from work for Dad's appointments and needs I am afraid I'll get fired. My boss has been very understanding so far. My Dad also does not like it when I want to tell the truth about his situation. I tell him if we are not honest, the doctors cannot help him. However, I do feel Dad is also in denial of what he can and cannot do. That makes it hard to work with him. However, so far, the doctors seem to believe me, so we take it from there. Day at a time! Hugs and blessings to you, Mary

By WitsEnd On 2009.06.29 17:14
It is really hard. Nobody wants to give up their independence. I know I sure wouldn't. At the same time you have to make decisions that make sure they are safe and that makes you "the bad guy" and you feel awful even when you know you're doing the right thing.

Home Health Care won't necessarily help you get help at night. I don't know what your financial situation is, but there are private duty nursing services that provide private duty nurses. There are also services that provide in home attendants/sitters. Home Health Care agencies tend to come, do their task, and leave. They might can refer you to one of the other agencies though that can do the sitting or private duty nursing. The costs aren't cheap though and finding someone who is dependable isn't always easy.

Hospice does provide some respite care for caregivers. I'm not sure how often or much this is though. That could be something worth checking on.

Don't beat yourself up too much about trying to keep her at home. Modifying bathrooms to be handicap friendly costs money. I've talked to several people who tried to keep loved ones at home and it just didn't work. I tried it myself at first with mom and dad. You can't work full time and do doctors trips and be there when the sitters are a "no show" and it costs more than a care home sometimes. Do the best you can and that's all you can do.

By Mary On 2009.06.29 17:48
As always, we must remember the disease is causing this, not us as the caregivers. Dad sometimes blames me for taking away his independence because he is not allowed to do things that are not safe or are likely to cause a fall. Sometimes I feel bad and sometimes I remember the disease took away his independence not me, and no one wishes him independence more than me! We'll just have to get each other through this difficult journey. Take care, Mary

By lostdaughter On 2009.06.29 20:11
I understand she doesn't want to give up her independence but I get angry that she is determined that she knows more than the doctors, home health professionals, etc. She puts on an act in their presence & reverts to whatever she wants when they aren't around. Six months ago I thought maybe the things she was saying & doing were caused by dementia. I know she has some cognitive deterioration but the majority of our problem is the fact that she simply refuses to cooperate. You don't not allow her to do whatever she wants. If she tries to get up & we try to stop her she'll twist her arm then blame you for hurting her. I don't much feel like she appreciates the sacrifices we make. She has told people that she can't make my sister mad because then I'd have to do everything for her. I'd love to know where it's written that I don't have a choice.

I have a great deal of responsibility at work as does my sister. There are things I do that no one else even knows to do. In addition, I have a co-worker whose elderly father is in bad health & the boss has told her to take whatever time she needs & that WE will see the work gets done. We means me. My boss has never told me to take whatever time I need & doesn't even ask how things are going. I think it's because this has drug on for so long.

I'm with you, Mary. No one wishes she could be independent more than me either! I don't feel responsible for her loss of independence. She lived it up after my dad died when I was a child while I've spent most of my adult life trying to help some member of my immediate family get their life together.

Thanks again for listening & understanding. It means a great deal to be able to talk openly & have someone who understands.

By LOHENGR1N On 2009.06.30 00:40
I don't know if or how I can do much good here, except to try to give a patient's view (and even at that I'm not into a situation like this at the present time). However reading this thread I feel the need to try to help. As for home health aids.......Here in Western Massachusetts there are some programs that if qualified for the patient can have a home aide P. C. A. come in to help. A Personal Care Assistant (P. C. A.) can go shopping for, take to Dr's appointments, clean home, bathe, set out and make sure med's are taken. They can do both health aide and home maker tasks. Try calling around for independent living agency's. Ask Social Worker about these programs. Also the P. C. A. gets to know You and interact with others family members so cares and concerns can be voiced and discussed easier than if one has someone coming in for a half hour to bathe and another to come in to make a meal for an hour. Well you know what I mean.

Now as for independence? Well you're right No one wants to lose any and GOSH ALL MIGHTY!! having one of Your children telling you what to do!?!?! That's like having teenagers all over again except this time they're in CONTROLL of you! Not much help here just giving a view from the other side.

Lost? Maybe it's time to talk to the boss? I don't know but if You're needed to do work no one else can do (and if it's possible to do a day of the work at home) They might be open to working with You on this? Perhaps the not asking how things are going is because You bravely are carrying on and aren't letting them know just how hard it is becoming on You? Again this is just an idea and You know your situation at work better than I. Something to ponder on, remember it isn't weakness to ask, less burnout is better for everyone involved.

Back to the P. C. A. mine's an Angel, yeah We have a butting of the heads from time to time. She's worked for Me for about 4 years now and I'm lucky to have someone who is devoted to Her job. ****If anyone tells Her of My saying this I'm claiming it's the Med's, lack there of or anything else I can think of in denial of such a statement**** (lol She know that's how I feel and from time to time I even tell Her that) Just to keep Her grounded though I tend to tease Her a We left My Neurologists office today, He said You seem to be holding together so just keep doing what you're doing. I turned to Her and said sweetly "See don't complain if I give you a hard time, I'm just following Doctors orders!" Take care, best of luck and hang in there.

By WitsEnd On 2009.06.30 08:41
It sounds like (speaking from personal experience) some co-dependence going on with the mother, sister and the boss. They take you for granted because you have a hard time saying "no" and establishing your own personal boundaries and limitations. I feel I can say this because I have the same problem too. People used to tell me that and I didn't understand until one situation got so totally over the top that I said "wait a minute" and finally woke up.

Family can be the absolutely best thing that ever happened.....and the absolutely worst thing that ever happened. I had one aunt say I should take both my ailing parents into my home, quit my job and care for them full time. When one of my other relatives told her I had to work full time she said "there's the family leave act"--she should just take off work and care for them-she just doesn't want to. That's easy for her to say. I guess she forgot about the part that she is retired and gets a pension and social security and that if you take off for the family leave act you get no pay....and your job may or may not be waiting for you when you come back. My parents, who could have been saving money for their old age didn't. My parents only plan with they got old was that their children (or in their case child) should take care of them. They didn't save any money. They didn't make any plans. It all fell on me.

In the end I decided being angry about things didn't help and I did the best I could out of love. I found work arounds for getting things done and stayed exhausted most of the time and totally stressed out but made it through. I juggled money and care needs and their personal wants (like staying together and keeping their dog).

In the end God is the one who propped me up and got me through. Every time I reached the end of my rope He was there. I wouldn't have made it otherwise. But I also learned to set boundaries and limitations. I went to get my hair cut and I get a page at the beauty shop wanting me to go take the dog to the vet NOW to get a checkup and heart worm pills. I didn't tolerate that. I said "no" and don't ever page me again unless it is an emergency." I also had a conversation with the aid about when it is appropriate to page me and why wasn't she on the way to the vet with the dog and dad because that was what she was being paid to do. She didn't do it and I did wind up taking the dog to the vet--but the aid got fired and replaced too.

The solution you come up with to bring in an aid may not be what she wants--she may want you to do everything yourself. You have to learn to put your foot down though and say what you are able to do and not feel guilty when you get pulled on to do more and more. Nobody can take advantage of you except you. Nobody can make you feel guilty except you. No matter how victimized and out of control you may be feelin-- remember in the end you do have control over how you feel and react to things. Sometimes the word "no" is very uncomfortable--but you do have the right to use it.

Hang in there. We're all rooting for you.

By Mary On 2009.06.30 10:15
lostdaughter, I really feel your pain and all that goes with it. I also have a job where others do not know how to do it, which means any time off work sits and piles up until I get back. Taking care of Dad is hard but the package of all of my responsibilities, including Dad, is almost overwhelming at times. I'm learning to set limits and say "no" when I need to but that has been a learning process. I'm one who looks at a situation, figures out what the "right" thing to do is, and do it. But with caring for Dad, I find things are not so black and white and I'm not always sure what is the "right" thing. At times, I do not even know that caring for him in my home is the "right" thing. I am so thankful for this forum. Hugs and blessings to you, Mary

By lostdaughter On 2009.06.30 19:16
Once again, thank you ALL for your thoughts & understanding.

Mom has an aide who comes in during the day while my sister & I work. My sister goes in late & I rush straight home from work to try to keep the cost down. The aide works directly for us & we've been pleased with her. She's honest & Mom has become very attached to her. We're very fortunate to have found her but she recently revealed that she can't leave the room either without Mom trying to get up & falling.

There are definitely codependency issues in my family, especially between my siblings and Mom. I decided a few months back that I wasn't playing that game any longer & my change in attitude has made Mom really mad at me. It wasn't the best of times for me to make changes but I had to for my own mental health. I couldn't stand the manipulation & game playing any longer. Mom now blames me for anything that doesn't go her way.

LOHENGR1N - thank you for your perspective from a patient's point of view. I wish Mom could be half as reasonable as you seem to be. The problem I'm having with her is the fact that she only wants the health care workers to know what she wants to tell them. She doesn't want them to know about the falls or hallucinations or her wandering at night. They can't do their job without having a clear picture of what's really going on.

Mary, you're so right that deciding what's "right" isn't black & white. Some of Mom's meds are all that make it possible for her to rise from a chair. Sometimes I think we should take those meds away so she wouldn't be able to stand up. That would certainly cut down on the falls & injuries but I don't know that it would be "right". It's hard to figure out how far to go when trying to protect someone from themselves.

I was able to speak with the social worker today & found out that Mom didn't give her a clear picture of our situation. I was able to fill in the gaps & set up a meeting between the social worker, my sister & me. The social worker feels Mom is in denial about her situation. I agree & that's the root of our problem.

You all are wonderful & I appreciate this forum so very much.

By gilly On 2009.06.30 20:38
I am mostly just a reader and don't post much. I don't seem to have any advice to offer. I just see how difficult your situation is and wish I could help. The meeting with the social worker should help a lot. Prayers for you, your sister and your mom.

By Mary On 2009.07.01 10:20
lostdaughter, please keep us up to date with your situation. I know I will be in your shoes soon enough and learn from your decisions. I appreciate your sharing with us so very much.

Al and Bob are wonderful! I too wish my Dad were like them. You guys make it easy for your caregivers! You truly do. I thank you for them.

Why is this so hard? I ask myself that every day. The cares I give Dad to get through his day are not hard. It is time consuming but not hard. So, why is this so hard for me. Why is it such an adjustment? If someone can enlighten me, I'd sure appreciate it.

Thanks to all of you, this forum is a godsend for me. Hugs and blessings, Mary

By WitsEnd On 2009.07.01 10:28
The really difficult thing when they get to the falling stage is there is no "right" or "good" solution. You can only stop the falls 100% of the time by using restraints. You can't rationalize with somebody who isn't capable of rationalizing--or won't even remember a discussion 15 minutes after it happened.

I remember when dad first started falling a lot standing at his bed (after his latest fall, x-ray and head laceration) and telling him he had to "stop getting up without somebody around--you're going to get hurt". He didn't acknowledge I was even talking to him so I figured since he was hard of hearing that leaning over so he had to see my face and repeating it louder while he was looking right at me would do the trick. He said he would do what I asked but got mad at me and told me not to tell him what to do.

There's just no easy answers. Children know if you stick your hand in fire that it gets burned so they don't do it again. The Parkinson patient doesn't remember the fire or the burn, gets focused on wanting to do something and continues to keep trying to get up and falling no matter what you say (even if you are standing right in front of them) and then they yell at you.

The only thing that stops them from doing this is when they get to the stage when they are no longer physically able to stand up. I remember thinking when that happened to dad that it was not good because he was going downhill--but it was also such a relief because at least I could stop worrying about him falling all the time. That sounds like a horrible thing to say, doesn't it?

By lostdaughter On 2009.07.01 14:05
No, WitsEnd, it doesn't sound like a horrible thing to say. It reminds me of my saying I've thought of taking meds away from Mom that help her be able to get up.
We're trying to protect our loved ones & that involves constant worry & stress about what's going to happen next. It is like dealing with a child but different at the same time. I truly feel it's harder than dealing with a child for a variety of reasons.

I appreciate you staying with this forum, WitsEnd. We appreciate your input and thoughts.

By bandido1 On 2009.07.01 17:08
lostdaughetr: Patient Bob C here-- "in denial" and "uncooperative" are two words that none of the caretakers should allow. If my spouse, nurse, nurses aide or any of my family,friends, former associates ever suggest that I have developed either of those patterns they are herby authorized to (1) invoke whatever tough love suggests is appropriate (2) threaten to ship me somewhere --(3) threaten to slap my behind and treat me as if I were a 2 yr old or(4) all of the above. Bob C

P.S. I will likely be both in denial and uncooperatve one day and Al will email my caretakers a copy of this post. Right Al?

By lostdaughter On 2009.07.01 18:42

I've read many of your posts & it's clear you are presently very realistic about your abilities & limitations. Although I don't wish anything bad for any PD patient, I feel I "know" you & Al to a certain extent. My wish for you is that (1) you never lose your wonderful sense of humor & (2) that you never suffer whatever causes one to be in denial or uncooperative.

Many blessings to you, Bob. Having input from you & Al helps us caregivers more than you'll ever know.

By LOHENGR1N On 2009.07.01 19:49
Aww, Thank You lostdaughter that is so nice of you to say.

..........a sinister snicker escapes His lips as he emails a copy of Bob's post to bob's caretakers.....HeeHeeee....!

By susger8 On 2009.07.02 07:50
WitsEnd, I started to reply yesterday but I got bogged down in some negative thoughts of my own!

No, it isn't horrible to have those thoughts. I have thoughts like that too, and I feel very guilty, but I'm sure everyone does. It's only human to wish that a bad situation could be better.

By Lindy On 2009.08.16 17:35
Hello everyone.
I'm a new member and from what I've read, you all are so helpful and supportive of each other and boy, don't we need that!
In 2003 my husband was diagnosed with PD.
Now, he sleeps most of the day away and then spends a fitful night talking to his hallucinations. (Of course, I'm not sleeping well.) One morning I woke up to find the rifle in the bathroom--it's loaded!
Sometimes he can shuffle to his easy chair but that effort tires him and he goes back to bed. Sometimes he gets tangled in the bedclothes and needs me to help straighten things out.
The V.A. helped us get an aide to help him shower and shave so that's a big help.
His appetite seems to be decreasing and he doesn't enjoy mealtimes much--if I didn't say anything, we would eat in silence. Sometimes I cut up tougher foods to make things easier for him.
Occasionally, he has had me cancel doctor appointments because he's just too tired.
I really just have two questions:
(1) what stage does it sound like he's in?
(2) what have any of you done to deal with
the loneliness of "losing" your husband/lover/best friend?
Thank you in advance for your response.

By annwood On 2009.08.16 20:21
Hi, Lindy
Welcome to our forum. I lost my husband to PD 18 months ago but continue to hang around here because I like the people and because I might be able to help someone.

In answer to your questions. I don't think the stage is important. It does sound like he has advanced disease but there are so many factors involved in making that assessment. If you are truly interested in the staging you can Google "Stages of Parkinsons Disease".

Have you discussed all of this with his physician? That should be first on your list to do. What are his medications and how does he take them? Perhaps an adjustment is in order. You will find that PD requires many, many adjustments.

Why do you have a loaded gun in your house???? Actually that is probably first on your to do list - get it off of the property. If your husband gets angry - too bad. We call that tough love here on the forum. These hallucinations are quite common with PD and are often acted out. They are terrifying and the pt is in a defense mode.

As for the lonliness - it goes along with the disease, unfortunately. I have often said that I lost my husband long before he actually died. You are lonely, exhausted, frustrated and often angry. It helps to maintain some close friends but most of the time you have to limit that interaction to telephone calls because you are needed at home. Try to get out for an hour or two every week - do something that you want to do. It will make you a better caregiver. You will get used to doing things alone and it really isn't too bad. Read, rent movies, sew - whatever it takes to keep your mind active. Learn to accept offers of help. If someone says "is there anything I can do?" say "yes" and be specific. This was a hard one for me to learn. Stay with us on the forum - we will talk you through about anything.

By bandido1 On 2009.08.17 11:28
Hello lindy: Wecome! If you have looked through this thread you understand that a couple of us patients provide commentary from time to time.Annwood is one of our seasoned commentators. The advice she offers is excellent. Please feel free to address any one of us about any topic you can think of. That's why we are here. BobC

By Emma On 2009.08.17 13:24
Lindy, get rid of the rifle! Earlier in my husbands illness he decided to keep a loaded gun in the house to protect himself. Nothing I said could dissuade him and I was afraid to try to physically take it away from him. I called his PD doctor and got right in. The doctor told him to get rid of the gun, my husband got nasty with the doctor. Finally the doctor said, "get rid of the gun or I'm calling an ambulance to take you to the psychiatric hospital". That did it. Harsh? Yes. Necessary? Yes. Did I suffer for it later? You bet! But it had to be done, it's too dangerous. Do whatever you have to do to get rid of it.

By Mary On 2009.08.17 16:07
Hi, Lindy!

Welcome to the forum. This forum has been a truly wonderful source of support for me through my struggles as a caregiver for my Dad. Everyone here is amazingly supportive, helpful and very understanding of everything that comes with caring for someone with Parkinson's Disease. Please visit often for advice, venting and to give advice. Hugs and blessings to you, Mary

By lynn On 2009.08.17 20:38
Lindy- I think many of us feel the loss of our spouse. Things evolve and one day you see your spouse as a responsibility not so much of a partner. I try not to think about it. I read and try to watch funny movies. I have a few friends that I see for lunch or coffee. It's not a replacement obviously. I think that's what makes caregiving hard. You're dealing with the disease and the loss. Keep posting and try to find something to divert your attention.

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