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Topic Caregiving compensations Go to previous topic Go to next topic Go to higher level

By rmshea On 2010.06.18 18:07
I was wondering if anyone who is managing care of a senior relative with PD gets some sort of compensation from the family. None of them help in any substantial way; when I ask for input on her care, they just say well you know best. I do this for my MIL. My husband is not emotionally close to his mom, but he essentially tells me that I'm doing a good job, what would he ever do w/o me, etc. She tells me if I need any money, to go ahead...but my husband says not to. I do take gas money for driving her.

By Pearly4 On 2010.06.18 18:56
My personal feeling is that unless I was doing full time care without working on the outside and was in dire need of the money, I wouldn't. I believe that in most families, no matter how close, how cooperative or how well meaning they are now, somebody is going to create an issue where there may be none and it isn't going to help the Parkinson's patient to be brought into all that. Not that I would let family rule my life, but the bottom line is the Parkinson's patient's emotional and physical well being -- family disputes can be a well dividing line.

Accepting a few dollars for gas once in a while - maybe. A quick hamburger or lunch, maybe. But unless the money part of it is handled by a disinterested third party who can take the heat (and I'd pretty much guarantee there will be heat), I'd stay away from it. And I'm not sure there wouldn't be some tax issues as well -- maybe SS on top of it. All things that happen everyday and get ignored at tax time, but once you have a disgrunted relative in the mix, you've opened yourself up to all kinds of accusations!

Family reactions are something that you can't always predict and do you really need the heartache on top of everything else?

By rmshea On 2010.06.18 21:19
I see your point...she's already being bullied into financially helping her drug addicted daughter who is nearly 60..she tries to sneak it by me, but I dont ask about the cash I give to her monthly. She stopped handling the finances 9 yrs ago during the heart surgery; I found her in credit card debt and all sorts of mismanagement that I steered her out of. And I don't work outside the home anymore due to my own health issues and a teenage son who is very difficult. Everything is in my husbands name and has been...so I expect there will be issues at some point. Best to avoid them while MIL is alive.

By karolinakitty On 2010.06.19 07:27
When it comes to family and taking care of a family member, you would be surprised what can happen. In my opinion family "bites" in these matters. When i cleaned out my mom's Senior's apartment when she went in the nursing home, and even though i divided stuff up according to her will, I still had her sister hating me because i took some things she said my mom wanted her to have. It can be a mess even if you follow things legally and get her to "pay" you. Some family members just like to stir things up. i would not want to get things going while mom is alive, i'm sure your husband will have a hard enough time later on....

By parkinit On 2010.06.19 09:30
I agree, Karolina. I have stepdaugthers who said, "Yes, of course we'll help," but when I asked specifically, Uh "No," now becomes the answer every time. They show up here for birthdays and when they think their dad will give them money or gifts, but otherwise, they never call and never visit. He once told me his daughters were relieved that I had married him several years ago after his first wife passed away because "they won't have to take care of me now." In this particular situation, it appears everyone else is just relieved they are not having to be "the caregiver."

I applaud your love and care, but would also try to get matters understood about finances and other personal belongings. My grandmother (and mother now), put names of who gave her things on the back or underside of them and the date. It was understood that if someone gave her something, they would be the ones to get it back. if it was something she purchased on her own, she got to decide who she wanted to give it to. If she has a will made, it would be good to also ask the lawyer to do some counseling about trusts, etc., if she wants to leave money to her daughter on how these could be set up to protect the daughter from going through the money very quickly.

If you need to go back to work, I would suggest looking elsewhere and asking the "kids" to pitch in to hire someone if this is possible. If not, you are not responsible and the "kids" including your husband are putting you in a bad situation simply because you are the "available one."

In many situations, the kids all pitch in and pay the one who is caring for the PDer. It's the RIGHT thing to do. There are vouchers that may be requested thru many states for "caregiver reprieve." When you need a break, I would request these vouchers so YOU can hire someone occasionally to take your place and give you a break.

By Emma On 2010.06.19 10:52
You can't always count on family can you? I've learned that the hard way. I have the same situation as parkinit, my step-kids totally ignore their dad. I get zero help from them and we never hear from them or see them except on gift giving occasions. I hope that there really is such a thing as karma , they need a wakeup call. In your case it is totally unfair that the burden falls on you. Her children, including your husband, need to step up to the plate and do their share for their mother. So what if they have other obligations or they work? They can use vacation time or family medical leave time. That's what you do when you have a sick family member. I probably wouldn't take any money from your MIL for the service you provide, not that you don't deserve it, but it has the potential to cause problems and raise allegations. It's not worth it. I think that taking gas money is fine. What I would do is call a family meeting and explain that this is a big job and you are happy to help out and do your share but that you cannot be responsible for everything and that they need to start doing some of the work or all pitch in to hire someone to do it. I would be very specific about what I could do and when I could do it. Then I would give them a timeline, a specific date, to implement the plan they come up with and be very clear that you will not be taking full responsibility after that date. This does not have to be a tense meeting, it can be a "we're all in this together so lets figure out a plan" meeting. They are taking advantage of you and they won't stop until you put your foot down and stand up for yourself. Good luck to you.

By lilflower On 2010.06.23 23:26
This is my first time on the site. I've never really talked to anyone about my situation. My husband has PD and was diagnosed 12 years ago but his symptoms started probably 8 to 10 years before that. He is only 60 I'm 56. He stopped working in 2003 and I had to leave my job shortly after. I am his fulltime caregiver. We live simply we were not ready for early retirement so we watch our budget. He has two grown sons that do nothing to help they never even offer or ask how things are. I try to grin and bear it when they show up for the occasional visit. I'm not complaining about my life I married for better or worse sickness and health til death and all that comes before that what I find difficult dealing with is his childrens lack of concern. Also why my husband won't speak up or doesn't want me to say anything to them.

By lurkingforacure On 2010.06.24 10:08
I hear that, my husband's mom STILL refuses to acknowledge her son is sick and it makes me crazy when we get together (which is too often, we live in the same town) she will bend his ear for hours about her OWN health, all the while seemingly oblivious to her own son's suffering.

I think family, not all, but seems like a lot, don't ask/talk about it because they don't want to be in a position of being asked to help. Heaven forbid they help.

I just know that if any of our kids were sick, I'd be on them like a dog on a bone! I cannot imagine a mother not picking up on the obvious symptoms of PD in her own son. I think it secretly really hurts my husband that everyone in the entire family knows about his PD except his mom, and I've been forbidden to tell her (and personally, I think he forbade me telling her because he's afraid she'll be just as uncaring as she is now, and that will hurt even more). So sad.

By lvmymom On 2010.06.24 12:48
I think you have a choice to as little or as much as you would like. That is exactly what everyone else in the family is doing. If you like what you are doing, then continue. If you do not, then give a two week notice and call in a social worker to help the family decide on alternative care.

By rmshea On 2010.06.24 20:27
Thank you for all the input...gave me some important things to consider. I have put boundaries on what I will do and not do; we will hire help when the time comes. She doesn't want any help, very stubborn and proud. But I am the only one with her med records and know all the medical people involved now..she won't even tell other family members what is going on, it's all me. My health may force the parameters to be drawn tighter, so she may have to accept help from someone other than me.

By lvmymom On 2010.07.02 14:12
I know, that stuburn "no outside help" issue is one we all have to deal with. We don't want to show disrespect. It is hard and I am sorry for all who have to face it. You are realizing you have to consider your health too, and that is very important. You can certainly share your concerns about what this disease is doing to your health and the health of your marriage and friendships as well. Maybe a social worker can round up the whole family and talk about what is best for EVERYONE. Then everyone is on the same page and feels united with decisions that concern everyone. It is amazing what an outside professional can offer. May be a good idea for you to talk with someone now... I always believe it is wise to be PROactive... and not wait till it is too late and things get harder than they needed to be. Your mother in law is very lucky to have you and your kind heart with her. You take care.


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