I am my husband's caregiver. He has had Parkinson's for 9 years. We have no local family or friends and I have all I can do to take care of him. I also work part-time which keeps my sanity going. I constantly suggest activities I know we can do together so as to stimulate his brain and body. Otherwise he watches TV all day. I suggest crafts, jigsaw puzzles, going to library to take out CDs on subjects he is interested in, helping around the house (there are still things he can do). I have purchased several items for him to use.
He is fixated on the fact that he used to play cards and can no longer do so because card playing groups have disappeared due to COVID. The ones that still exist are at night and I do not drive any longer. He wants to drive himself, which he can still do, but then there is no one to get him into or out of his wheelchair. Someone would have to accompany him to card games and wait there until the activity has ended or until he wants to leave. He wants to go to malls but we need a lift for the car, which we had at one time, to be able to transport the scooter. I am not physically able to place the scooter on the lift and cover and uncover it constantly when we are out.
I don't know what more to do for him. As it is, I am 74 years old and have arthritis so it is not that easy for me to get around. I would hire an aide to help but we do not need ongoing or daily help and I believe that anyone we hired would want a routine ongoing schedule.
What am I missing here? How can I help both of us live our best life such as it is?
I have suffered with PD for 18 years and I have volunteered with the Parkinson Foundation as an Aware In Care Ambassador. There are multiple issues to address. I find that I am sharp in the evenings, I have more energy and I enjoy being with people later in the day. All my meds have to come together for me to function well. I am content to sit, watch TV, and snack on my favorite, easy-to-grab foods. Each PD patient is unique, but your husband may be experiencing similar conditions. Someone else suggested you go to the Parkinson website. That is advice you should follow: parkinson.org Helpline: 1 800 473 4636. There are many more organizations ADPA, Michael J Fox, Davis Phinney.Three of the big organizations. Look for a local support group. Your health insurance company probably has many online activities. If you are not familar with an online video/chat provider, the person, company, doctor's office, etc will have someone who can talk you through the set-up, Be warned - this is a live format. you can see people and they can see you. Dress and behave appropriately. They can see some of your house. You can turn off video and/or sound.
Your husband may enjoy non-contact boxing designed specifically for PD patients. There may be socially distanced meetings at the senior citizens club. The local Council on aging probably supplies transportation. There are many men's group at local churches. Whatever he does, be sure that he takes meds on time and drinks plenty of water.
You need a break on a regular, periodic schedule. You deserve breaks and taking care of yourself is important.
Good Luck!
Many malls are almost in the process of closing down unfortunately as they lose stores and people get more used to ordering on line )but there are some that are alive and weel. As has been suggest check with your local office on aging, and senior citizen center for transportation although it will generally be in the daytime. You can try the senior center activities and adult day care but even though they may open, I have a feeling he may not want to go. Seems to really be into card playing so check to see what is availble on line. Also, if you are comfortable with people coming into your home, see if a local group would like to start a card playing activity at your home one night a week.
Good luck on this journey.
Also see if there is a local card-playing group at a church, assisted living, or nursing home that meets during the daytime. They might be able to point you to other transportation services that can help you out.
Start your own Poker Night at your home, make it fun and have food so they'll want to come back.
Even with covid. You'll be able to find enough people willing to come for a poker night, Especially if there's Free Food.
Check with your Neighborhood paper and list you're looking for a few regulars to join a weekly poker night.
They have poker you can play On Line.
They also have wheel chair capable cabs that he could take to a poker game.
The mall...is there elder transportation with a wheelchair lift? If so could you meet him at the mall and reverse the procedure to go home?
Sounds like he really wants to play cards. If he can still drive at night, couldn't one of the card buddies help him in and out of the car? Otherwise, look into hiring an aide. Perhaps, the Parkinson's Association could help in that area.
Also, having card playing in your own home could be a solution.
Best wishes.
My husband is also diagnosed with Parkinson's I am physically exhausted with all the added stress of being full time care provider. Affordable options to get assistance is few and far between.
Sreally if you have a transport company that deals with people who are diagnosed with physical or emotional barriers which could take him to an adult day care center. Our county has one and I am so glad as it gives me a bit if me time and my husband gets away from the 4 walls of the house with other people.
Best of luck.
Your local Senior Center might also be an option.
Many areas also have Public Transportation for Seniors and disabled you probably need to arrange in advance but the bus or van will come pick up and then return at the designated time.
Does your husband happen to be a Veteran? If so the VA has Day Care programs that they "approve" and it might be free. If he is a Veteran contact your local Veterans Assistance Commission. (bonus you might be eligible to get paid for caring for him)
There are numerous Parkinson's resources such as the Parkinson's Foundation, the American Parkinson's Disease Association and others that you can contact for free ideas and support. Also contact your local Area Agency on Agency (every county has a one) for local solutions like transportation issues. You have the right idea to try to have him be active, but maybe take a different path to get there. Could you have a card playing event at your place? Are there community or church volunteers who could stop by to do that once in a while? Just keep reaching out for new ways to approach things. Good Luck.