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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?

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It sounds to me like you are trying to do everything yourself. You are boxing yourself in with things you don't think would work out, like an occasional helper. Are there any community resources you can use? For example is there bus service for people in wheelchairs that you can schedule for a trip to the mall as needed? How about cable TV with YouTube videos which have many programs of exercises for Parkinson's patients and just about everything else in the world. That's an alternative to going to the library for material. How about online support group meetings on Zoom? There are numerous Parkinson's groups that provide regular social interaction this way. How about an online support group for caregivers such as yourself? Maybe you need to reach out since you have no family or friends nearby. (How did that happen?)
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.
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Jogo12 Aug 2021
Good ideas worth exploring! Thank you!
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Have you looked into Adult Day Care. They have activities that he could participate in and most will come pick up and return them home. A snack and a meal between.
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)
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He may be depressed. Can you discuss this possibility with his doctor? Also, you can hire an agency companion aid to take him to the weekly card games. I bet someone would be interested in it if it were on the same night every week for the same amount of hours. I would request a guy, which may help your husband feel more comfortable with the help.
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My county has adult day centers and provides door to door transportation. Maybe if he’s out of the house and around people it will give him a better attitude and something to look forward to.
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There is a strong possibility that depression is creating some of his problems. It is difficult enough for able bodied people to feel safe going out with COVID-19 lurking, but, the friends he acquired at the card games may not be going as you stated because of covid. I would discuss with his doctor about the possibility of depression or maybe even he has dementia starting as that changes how a person thinks. Again, best to talk to the doctor.
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.
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I would concentrate efforts on the 2 things that he wants to do, the mall and cards. Other things may follow.
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.
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You can hire someone to help just a few hours once or twice a week, it doesn't have to be Full Time.

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.
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I definitely recommend going to the Parkinson’s Association for ideas and contacting them with your problems to see if they can help. There’s also a program called In Motion which is Cleveland Ohio, but they have virtual programs, and if he doesn’t want to go anywhere that may help.
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Check with the county or town about senior bus. They usually come to the house, have a lift for wheelchairs, and can assist with getting on and off the transport. Most are reduced price for seniors. Then, go all those places you suggest and take hubby along since "you want to go there."

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.
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Some of the bus services will take you door to door for disabled people - and usually with a companion so you both can ride , often it’s even free . Some malls also have activities so check that out , might be different these days. Just getting out will do you both wonders and perhaps will lead to more outings.
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So sorry you are going through this. Sounds like hubby may be a bit depressed (very easy when you get a dx like his and covid has not helped any of us!) so perhaps a check in with his doctor might help.

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.
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In terms of getting him to do some activities at home, sometimes asking a yes or no question will get you a "NO" no matter what the question is. Try asking him to help you or just start the puzzle yourself and maybe he will just join you...it often worked with my mother.
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Jogo12: Imho, you may be able to benefit greatly from the Parkinson's website, e.g. rides available to card games, other entertainment, et al.
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Hello,
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!
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