Hi,

I don't know how helpful I can be. I'm not in assisted living. Was he in assisted living before PD or now because of PD? Without knowing his physical/mental state, it's harder to make suggestions, but here are my thoughts.

Since I can no longer do the things I used to do, sometimes I feel like my life doesn't have as much value. Are there any areas where your family member can "help" you? Maybe by offering advice or recalling family history. Maybe by sharing knowledge on an area of expertise. Helping him feel like he can still contribute something to the world might help.

Another thing I've experienced because of my slowness and how frequently I just don't feel well is that I don't get to spend as much time or do as much with my family as I'd like. Since you mentioned you don't visit as often as you should, I believe you are aware that doing so would be helpful. No one wants to feel like they've been forgotten.

Again, without knowing his condition or abilities, it might be worth mentioning that people with PD often have sleep disturbances. Maybe he'd enjoy books, word or number puzzles, or other quiet activities to pass the wee hours.

I'm sure you'll get other great advice from other members as well.

Most importantly, be an advocate for/with him in his care. Listen to him, ask questions, notice new developments in his symptoms, and report all this to his doctors. Do research and ask questions of his doctors, too. Too much is unknown about PD.

In closing, keep getting support for yourself. Being a caregiver is sometimes thankless and exhausting, even if it's not full-time. Plus, it is emotionally draining to watch someone you love succumb to this (or any other) debilitating disease. Don't forget to take care of yourself.

Thank you! That was very helpful. I appreciate you sharing your thoughts and ideas with me. I feel like he does not want to talk bout it because he feels like it makes him vulnerable. He still works out everyday and attends A.A., as he is a recovering alcoholic as well. He is still active and I believe that helps his overall health a lot! He has trouble on the treadmill because he can hardly walk, but he loves to swim!

Readerleeder said it very well. From my family's experiences, I can only emphasize the importance of being active in your family member's life on his journey. Since he feels vulnerable, let him know and feel that it's okay to be vulnerable around you, that you do not judge him and that you will not abandon him.

If he wants to be left alone, honor his wish...but only for a few days or a week. Then call and suggest the two of you get out and do something together. If he's not up to it, suggest visiting him, perhaps sharing a meal with him at his assisted-living facility (ALF) or bringing something homemade or from his favorite restaurant to have in the private dining room (which most ALF's have), in an outdoor sitting space, or in his room. As PD progresses, eating in public becomes of greater unease for many with PD, so doing what he's comfortable with is important...as is assuring him that you won't be embarrassed if he tucks his napkin into his shirt, drops some silverware, or needs you to cut something for him on his plate.

If he wants to get out, ask him what he'd like to do. It doesn't have to always be something fun. It may be much more meaningful for him if you attend a doctor's appointment with him, especially those with his neurologist / PD specialist. As his PD progresses, having a second pair of ears at a doctor's appointment and someone who can take notes for him, becomes increasingly more important.

Key here is to ask him what he'd like and, if he has difficulty deciding, making suggestions. Be understanding that his wants and needs will change as his PD progresses. Be patient, understanding, and reassuring that you'll be there for him, if you are able to make such a commitment. And, as Readerleeder wrote, take care of yourself. Your presence in your famiy member's life will mean the world to him, especially as other people exit his life the longer he lives in an ALF, which becomes a world in and of itself for those who live there. Your gift of time, attention and care are so much more meaningful for him as his world becomes smaller over time.

I've been a caregiver for my parents -- and now only my mother, who has PD -- for quite a few years. You're welcome to write me any time if you have questions or just want a sounding board. I'll gladly help you however I can.

Best wishes to you and your family member.

Amanda, I forgot to add that my mother lives in an ALF as did my father, briefly, two years ago. I have quite some experience with skilled-nursing facilities and assisted-living facilities...and life for people in such communities, having spent the bulk of the past 2.5 years with one or both parents in them.

Thank you for your question about reaching out to your family member in a nursing home. My mother is in a nursing home and everything Sand says is so true. My mother so appreciates us bringing her food into her. She swears the food is terrible there but I tasted it and it tastes pretty good - but she likes the fast foods with lots of spice and of course the food at the home is not like that. She loves to go out for lunch. We are having an upcoming family get together and my sister is taking her out of the home for a week and driving with her from Indy to NJ. She is all excited about that trip.

It is always great to be able to keep my mother in touch with other family members. Maybe picking up your family member and taking him to family reunions or get togethers for the holidays. If he is too much to handle by yourself then arranging transportation with the nursing home. My mother is just on the verge of swinging over to not walking - and my sister can arrange transportation with the home and then meet them at the doctor's office, at scheduled shopping outings.

If you cannot make it to visit my mom so appreciates phone calls and definitely loves receiving cards with pictures and chatty letters about what is going on in the family. Her sister is good with sending my mother these types of things and she loves it.

Another thing my mother loves is when we get together as many family members and friends as possible and do a family visit - bring deserts and we can go to the dinning area to accommodate us. Mom has a roommate and we always try to include her in our visits as well.

It really helps keep her in good spirits.

Amanda, If you can prepare an mp3 player with the type of music he likes classical, show tunes rock whatever and keep it simple so he will be able to use it without you there It will make him happy. People forget the music they love. Access to anything other than the elevator music they tend to play in most assisted living facility's is usually motivating. Don't feel guilty if you can not be there as much as you can. Guilt is a useless emotion that takes up space in your head and does not pay rent.. good luck and good health. Alex

Thank you for the reminder to keep guilt at bay, hisknobs. While I believe it serves a purpose if it motivates one to action, dwelling in it is a useless activity that is harmful to one's self.

I like the music idea, too. Music moves the soul.

So reassuring to have the communication and support on this thread! As a person with parkinsons, I find all the questions and responses to be right on the money. As a caregiver for my mother who also had Parkinson's, I think I was able to provide a patient, listening ear and interpreter as she became increasingly troubled by word loss.

This busy world of ours can certainly become very frustrating with the multiple ways parkinsons slows us down. As I slow down I'm just hoping I can let my need to take one thing at a time, provide just a spot of rest and break from the pressured need of those skilled multi taskers to handle as many things as they can all at once. I want to remain aware that it is possible for my forced slowdown to have some benefits and positive elements.

parky2010,
In response to your post, I say," Here, here!" Well-spoken.

Hi Amanda you are sweet person. thank you for your attitude . Just let him or her know you are willing to help. That will give the person a great relief . they may need to help them to go to Dr, make sure the computer is working well .That the place they live is good an take care of him .Yes good music and other entertainment is available to him. But most of all be there. available and ready to step in if he needs you.