How to be a good spouse when they have Parkinson’s

Being a good caregiver to someone with Parkinson’s can be a difficult job. If the person you are giving care for is your spouse then this can be like tiptoeing on eggshells. So, I wanted to share some of the tips and tricks I have learned from being a caregiver to a spouse with Parkinson’s over the last few years.

Making sure they take medications

Something helpful I do for my spouse is to remind him to take his medications. We set up alarms on his smartphone so that he is reminded when to take his medication. We bought weekly pill boxes with 3 compartments per day and set them up a week at a time. This makes it really easy to see if my spouse has taken their medication or needs help remembering. I can also encourage my spouse on days when taking medication can feel like too much of a chore.

Assisting them in getting to the doctors

Depending on where your spouse is at, they may not be able to get themselves to their doctors’ appointments. I usually drive my spouse to the doctor’s office or hospital, and he has agreed for me to come into his appointments with him. I usually jot down notes of what is said to make sure we don’t forget, and we can talk it over again when we get home. However, arranging someone else to come and give them a ride to the doctors is also a great way to help out your spouse and give them less to worry about.

Listen to their struggles and give them the opportunity to share

Living with Parkinson’s can be frustrating, and it can often feel very lonely. It’s important to periodically check in on your spouse to let them vent their struggles and everything they are feeling. This will not only be helpful for them, but it can bring you closer together. My spouse is not good at sharing what he is feeling, so I usually try to do this over a cup of tea with some cookies, to make sure I am really listening and he feels more inclined to share.

Understand and research their disease

Knowledge of Parkinson’s disease and how to fight back against it is critical for anyone living with Parkinson’s. But there is a lot of information and it can be overwhelming for one person to try and learn all of it. So, the more you can learn to help compliment your spouse’s knowledge the better off they will be. This has been made so much easier using the internet, but again it is important to have quality time to discuss what you have learned. As we all know Parkinson’s is as individual as the person living with it. To learn more about Parkinson’s disease Click Here.

Encourage and don’t nag

There is a fine line between wanting to be helpful by encouraging your spouse and being a nag. And the line can be crossed easily with good intentions but horrible results. So, it’s important to be aware that this line can easily be crossed and make sure that your spouse is comfortable, to be honest with you in case you ever cross the line into nagging. If you feel you have hit a brick wall with something, try talking to another family member, and get them to talk it over with your spouse. That different perspective sometimes breaks through where encouragement from you has failed.

Take time for yourself

Being a loving partner is hard work and it only gets harder for both of you once your spouse has a Parkinson’s diagnosis. So, it’s important to take time for yourself so you can recharge your own batteries to look after your mental health and better care for your spouse. Only you can find what works for you; for some people it is rest; for some, it is having ‘alone time’; for others, it is maintaining a hobby or just keeping up with friends.

Exercise with them

Exercise is a fun and effective way for your spouse to delay the progression of Parkinson’s. However, any activity is more fun and enjoyable when it’s done together, so when your spouse is struggling to find the motivation to work out it is very helpful when you can be their exercise partner and help give them motivation.

Encourage them and yourself to socialize

Depression is a common symptom of Parkinson’s disease and a big cause of this can be a lack of socialization. It is important to recognize that your spouse is still the person you decided to be your life partner. Encouraging them to keep up with your joint friends and do the things they always loved to do for as long as possible is vital. Talking with other people who are facing Parkinson’s and can empathize and understand the different struggles they are going through is also supportive. So, it can be helpful to encourage and find Parkinson’s communities where your spouse can find others with Parkinson’s to connect with. For communication and exercise programs online that help bring this type of community into your spouse’s life Click Here.

Acknowledge that you are living with Parkinson’s too – you will have moods, and depressions, and feelings too

Being a spouse to someone with Parkinson’s is not easy and it’s important to realize that it places a hardship on you as well as your spouse. So, don’t feel guilty about your spouse’s Parkinson’s disease affecting you as well.

These are my experiences and lessons from being a spouse with someone who has Parkinson’s. Everyone is different, but I hope these tips might be of benefit to you and your spouse as you both navigate Parkinson’s disease as a team.

For more information on Parkinson’s disease please Click Here.

A photo of a wife and her spouse with Parkinson's
Photo of Jan with her Husband Adrian

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