My dad has Parkinson’s disease and my mom is taking care of him and she has almost given up. How do I get them to move into assisted living?

We had to move my mother-in-law into an asst living. After one too many falls and a broken hip plus being legally blind, her doctor told her she couldn't live alone anymore. She told me once that she wished she and my father-in-law had made the move years before. She said that they had talked about it, but never followed through. It would've been so much easier if they done it as a couple while they still had some health left. Once he died and she went directly into dementia, it made the move much harder on her and us. If they had done it together, all the downsizing would've been taken care of, the choice of where to go would've been made, and the fact that they WANTED to move would've made us all breathe easier. But instead the choice was taken out of her hands and ours. She went into asst living kicking and screaming on the bad days, and resolute on the good days. Tell your folks don't wait till the choice is no longer theirs. Make the move now, for the sake of all including their family.

Painter - My husband has Parkinsons and I recommend the web sight pdf.org Their videos and printed information are amazing. I don't think your mom understands that a lot of the things your dad does and says are due to the Parkinsons.
I didn't. I also don't think she is jealous. I think she believes no one understands the little everyday things that she goes through with him. If she trys to explain them to people they sound so petty that she quites trying to explain. These little things are the ones that probably drive her crazy. .
This web site explains everything about PD from the beginning to the end and tips on how to deal with it.
When she understands the disease more maybe she would warm up to the idea of going into assisted living. I also believe she is depressed. You can't get away from it but there r ways to deal with it. Having a family that understands her delima is half of it. Lots of luck. Duke

Dear Painter,

In my family, it's my mother who has PD and my father is her primary caregiver. I'm an only child and secondary caregiver. In addition to my mother's daily struggles with this debilitating disease on all fronts (physical, mental, and emotional), there are also my father's issues with frustration, anger, depression, and "burn out." So, believe me, I understand the every-increasingly difficult situation that you are in and can relate to the changes in your family dynamics.

Without knowing more about your situation than what you've written here, I would say that your mother may want your father to remain as able-bodied and independent for as long as he possible can. Doing things for himself -- for example, making a sandwich for himself -- means that he is required to move physically (moving around in the kitchen or, if his mobility is already severely limited, then at least moving arms and fingers), work on his mental processing abilities (brain-to-hand coordination), and feel empowered to be able to still do certain things himself even as his body (and, perhaps, mind) are starting to fail him. Your mother may not expressing this desire for your father's independence in the best of manners since fear over her husband's decline mixed with her own physical and emotional exhaustion may lead her to get upset at you and your sister.

How familiar are you with Parkinson's Disease? I agree with Duke in his post. The web site www.pdf.org is an excellent resource, whether you're new to PD or not. There are also some terrific books that you can read. Since my mother's diagnosis, I have read everything about the disease that I can get my hands on, both on-line and in hard copy. If you want/need a quick-read, in addition to the PDF web site, I'd recommend reading at least "Parkinson's Disease For Dummies," also a very good resource. I wouldn't stop there, though, since the sooner and better you understand the complexities of this disease, the better you can help and the less your own frustrations. While much emphasis is placed on motor skills, it's important, too, that you understand the cognitive impairment that becomes part of the disease at some point for most people with PD. Such changes can be very subtle and mild, ranging from problems with processing certain information and decision-making to periods of apathy and anxiety or depression. It saved us a lot of drama to understand that such changes in my mother were part of the PD and not any sort of games of manipulation on my mother's part.

With respect to your mother's remarks to your father, I wouldn't completely rule out attention-getting since the caregiver can be neglected as all attention is focused on the person with PD, but I believe it's more a matter of letting off steam. She is frustrated and burned out and, like my father, is "no longer herself." PD doesn't just assault the person with the disease; it also gravely impacts those nearest and dearest. While boundaries of acceptable behavior need to be in place, I have learned to roll better with the punches when my father lashes out verbally. As things become more and more difficult for your parents, the need to be "the calm in the storm" for them becomes more and more important so things don't escalate unnecessarily. I suggest that you and your sister encourage your mother to leave the house and do something enjoyable for herself a few hours per week, either alone or with her friends (i.e., away from family), during which time you and your sister can take turns spending time with and caring for your father. Most of my father's frustrations and outbursts boil down to his desire for some quiet time to himself....and a need for more and better sleep.

As for your concern about whether your mother is depressed, that surely may be a factor in all this since, after all, she is going through a very difficult time in her life and in her marriage. However, that is a question best left up to her and a qualified physician to answer.

You also raised the issue of assisted living. There are several good articles about this topic available on this web site that you may wish to check out. Again, it's difficult for outsiders to answer this question for you since so much goes into reaching such a decision, although I'm sure you'll receive valuable input from others. In my family's situation, my father and I have discussed the various options, and I have provided him with information from my research. I see my role as that of advisor and listener, not decision-maker with respect to my parents' marriage and lifestyle. My father knows that I'm here to help with making arrangements for adult day care for my mother (something he is finally coming around to agreeing to), in-home third-party care when he/they are ready for such, and eventual assisted living or nursing care when that time comes. Letting our parents know that we're here to help them rather than push them into something or hinder their efforts to remain independent or contribute to the drama ourselves is a gift that we can give to them during these difficult times in their lives...and ours. Perhaps you can start the family dialog by sitting down with your parents and sister after doing some research into available options (so you're well-prepared for questions and possible resistance), getting everyone comfortable with open dialog about such issues on a periodic basis. Personally, that first conversation with my parents was the most difficult, especially with respect to my father who saw it as an infringement on his independence on the part of his daughter; now, two years later, we have periodic conversations without conflict, and my suggestions are better received.

Hard as one tries and no matter how much one reads, nothing helps prepare a person for the sadness of losing one's loved one and the frustrations involved in being relatively helpless in stopping its progression, even if it's a slow process over many years. I hope you and your family can grow closer with time; you need each other to get through this. I'm here if you have questions or feel the need to vent. Best wishes to you and your family.

Living in the Assisted living is great for people who are very social, can go out, enjoy new friends it's like living in the hotel with 1-2 times a day visit of a aide but, when they need more help gets more expensive and the Assisted Living may ask you to move. So, my advice to stop moving later on why don't you look into Group Homes or however they are called in your state. In Wa these houses are called Adult Family Homes, it is homelike environment and the ratio is 1 caregiver for 3 residents instead 1 caregiver for 15-17 Residents in Assisted Living or Nursing Homes. Even look in these website on housing option and they might be listed under Assisted Living.

Vali712, are you seriously recommending splitting up a husband and wife and placing a spouse into a group home with a bunch of strangers merely based on the information provided by Painter? Not only would my father throw me out of their house and possibly never talk to me again if I made such a recommendation for my mother, his spouse of more than 50 years but, moreover, he'd be justified in doing so! There are many options for Painter's parents to consider, starting with having a paid caregiver/helper come to their home for a few hours per week or even per day, before considering something like what you propose. Sorry, but being in a similar position to Painter, I just had to provide my feedback!

Be very careful with assisted living. My mother was in assisted living and the owner of it stole my mother's mobile home, stole money from her as well as a lot of items in her home. Medicaid does not cover assisted living but does cover nursing homes.

Your Mom is ovewhelmed....I know the feeling. My Mom has PD and deals with it bravely. However, every day some of her abilities slip away and it is frustrating for both of us. The way I deal with it is to make her home as safe as possible. I have bought her all sorts of products that help people with PD live more independently. (ie: non slip plates that curve so she can feed herself, cups and bowls with built in straws, risers on the toilet seats, handle bars, button hooks so she can dress, etc....there are many websites that sell these products.) This way, she feels that she can still do something for herself.
Your mother has the main care of your dad on a daily basis and has a set routine, so she has come to think of it as her "job." When you help your dad she may see it as a crticism. When she says that you are "babying him" she is either in denial about the inevitable or trying to help him be more independent by doing more for himself....either way, I would back off for awhile and wait until she asks for help. (btw, what do you mean by, "she has almost given up.")
My Mom has lived for over 15 years with her PD. It is really her other health issues that are causing her problems. So I do my best for her and try to let her do as much as she can.
You will know when the time is right to bring up the issue of an ALF. In the meantime, gather as much information as possible so that you will be prepared. Schedule visits to the facilities to allay any fears your parents may have.(However, I have to agree with Vali. ALFs generally want to attract "healthy" seniors. They do not provide much care for advanced situations. IMHO, I think that they very expensive for what you get.)
good luck...you are good daughters to be so involved...