How to support family member with Parkinsons

As one who very recently was diagnosed with PT about the best I can say is let her know you will help any way possible. Sometimes just having someone who will listen and not get upset with the mode swings and forgetfulness if those are some of her problems.

I was diagnosed with PD a year ago. One of the most annoying things I have experienced is EVERYONE has a remedy for PD that they are adamant I try. If I followed all the advice I have received I would be a Vegan, juicing, protein drink chugging, gluten free, supplement swallowing, carnivore dieting, meditating, electric shock suffering wreck. And none of them had an ounce of actual experience with PD or with someone who has PD. The only suggestion I would advise is to recommend she join a support group such as this one or one in her area. I have found having others with PD to share my experience, questions and frustrations with extremely helpful. Outside of that be a good listener and sympathetic to her experience and don’t try to “fix” her. I wish you all the best and hope your sister finds the help and support she needs.

Hi, @rl2wings - I wanted to add my welcome to Mayo Clinic Connect and also tag a few members who may have some thoughts for you about how to support a family member - who lives a distance away - with Parkinson's.

Please meet @seniormed @hopeful33250 @adrienne625 @foundryrat743.

Welcome to connect.mayo clinic, from a contributor who has PD, plus several other, equally difficult chronic conditions to manage. Because my wife has cognitive and heart issues, I am also a caregiver! This background information is important to understanding other family support problems. that I have had. I have limited support from immediate family members. Several close family members live about 50 miles away, in the country. Their lives and responsibilities keep them busy, and they do a lot of international traveling, being professionally trained relatives. When they are home, they are supportive, but it is limited. I have a brother and sister, who live near the ocean coasts, one on the east Atlantic coast, and the other, on the west Pacific coast. So, we talk on the phone, occasionally, but I haven’t actually visited one sibling in 8 years, and the other, it’s been about 25 years. So, these relatives are the type that are all wrapped up in themselves, so much, that I am the one giving verbal emotional support, rather than the other way around. However, I have a couple neighbor/friends, who are practically supportive of me, like helping with delivering groceries, because I am mobility compromised. I am thankful for that. So, my wife and I manage each day, to get basic chores and personal care activities done. It is not easy, considering that we are both in our 80’s. Our former friends, who helped us, and we had helped them, which made life easier, all have, sadly, passed away. So, helping relatives, when one lives a long distance away, is also very limited. We live in the middle of the country, so I can’t count on my brother and sister, to be able to give much support. A sense of helplessness sometimes makes me feel like I’m in a tight spot, especially if I’m having a bad day, because of PD, or one of my other chronic problems! We are not wealthy people, so assisted living is not possible. When I was younger, I helped out, with my parents, as they got older, because, for one thing, I lived nearby. I always thought that when my wife and I got older, and needed help, that, surely, someone would be around and help. I’m finding out that thinking that way, is not the reality of what’s happening. I hope my story may give you some insight on helping you, in making decisions, on helping a PD afflicted person, from a distance!

My husband was just diagnosed with Parkinsons. This ia a new journey for me. My husband had a liver transplant 14 years ago from a live donor for a rare disease called PSC. I have been caretaking for many years which maybe why I have anxiety issues. This being treated. I thought I was taking care of myself. But I guess not so well. We are at a distance from our daughter who has her own health issues. We still have family, friends and church members for help. i have no idea what I am facing with PD. I am younger than my spouse who is 80 and do most everything around the house. He is at the very early stages of PD. I want to take care of him at home. I get how you need to be encouraging and positive when they have problems. Right now he is on Dopamine and has OT and other therapies to help handle his movements. I too helped out with my parents as they aged. But lost them both within 10 days of each other. Fortunately I moved them near me and they never needed assisted living care. So, yes life throws your challenges. I have always believed that God never gives us anything we can't handle. But I know it is a struggle.

Your husband’s Parkinson’s diagnosis is a new chapter for both of you. It is understandable that you feel anxious about what lies ahead, especially after years of caring for him following his liver transplant and helping your parents through their final years.

You have already experienced a lot of what caregiving demands. You know how to advocate for someone you love, manage a household, and keep going when life becomes difficult. But that doesn't mean you should have to do everything alone.

And losing both of your parents within 10 days of each other must have been an enormous emotional blow. Even when you have done everything you can for the people you love, grief and exhaustion can catch up with you later.

What I want you to know about Parkinson’s
An early Parkinson’s diagnosis does not mean you are about to lose the life you have now.

Parkinson’s is a progressive neurological condition, but its course varies considerably from person to person. Many people continue living at home, participating in family life, enjoying their interests, and maintaining independence for years.

Since your husband is in the early stages and already receiving medication and occupational therapy, you are taking some important first steps.

Here are a few things that may help you feel more prepared.

Take it one stage at a time. You do not have to prepare for every possible future complication today. Focus on what your husband needs now, while learning about what might come later.

Keep therapy going. Occupational therapy can help with everyday activities and adapting tasks. Physical therapy can help with balance, strength, mobility, and fall prevention. A physical therapist experienced in Parkinson’s can be particularly valuable.

Protect his independence. Encourage him to do the things he can safely do himself, even if it takes longer. Helping him maintain his abilities is often more useful than doing everything for him.

Make the house safer gradually. Pay attention to loose rugs, clutter, lighting, bathroom safety, and any difficulty getting up from chairs or moving through doorways. You don't need to turn your home upside down all at once.

Ask questions early. His neurologist can help you understand his particular symptoms, what to expect from his medication, and which changes should prompt a call to the office.

One medication detail worth clarifying: if by “Dopamine” you mean a medication such as carbidopa/levodopa, it helps the brain use dopamine more effectively. Parkinson’s medications can improve symptoms, although they do not stop the underlying disease from progressing. His specific medication and response will help guide his care.

And now, let's talk about you.
You said something that stood out to me: “I thought I was taking care of myself. But I guess not so well.”

Please don't turn that into another reason to blame yourself.

Caregiver stress can build slowly. You may be handling appointments, household responsibilities, emotional worries, and all the little things that keep a family functioning. You can be capable, faithful, loving, and strong while still becoming overwhelmed.

Anxiety isn't proof that you have failed to care for yourself. It may be a sign that you have been carrying too much uncertainty and responsibility for too long.

Here are three things I would encourage you to begin doing now:

1. Keep your own health appointments.

Continue getting treatment for your anxiety. Protect your sleep, keep up with your own medical care, and make time for activities that restore you. Your health is part of your family's care plan.

2. Let your family, friends, and church community help now.

Don't wait until you are exhausted. Someone might bring a meal, sit with your husband while you go out, help with errands, or accompany you to an appointment. Accepting help early can make it easier to keep caring for him at home.

3. Keep a small part of your life just for you.

It doesn't have to be a vacation or a major lifestyle change. It might be time with a friend, church without worrying about the next task, reading, gardening, or simply having a quiet cup of coffee. You are still a wife, a mother, a friend, and an individual—not only a caregiver.

You can plan to keep him at home without promising to do everything yourself
Your wish to care for your husband at home is understandable. You were able to keep your parents near you and care for them, and you want to offer your husband that same comfort.

You can absolutely make staying at home the goal. The best way to support that goal is to build a support system around both of you before you urgently need one.

As his needs change, that might mean a Parkinson's support group, respite care, help around the house, or a social worker who can explain available services. These are not signs that you are giving up. They are ways to make home care more sustainable.

The Parkinson's Foundation offers education and caregiver resources, and its helpline at 1-800-4PD-INFO (1-800-473-4636) can help you find guidance and local support. You don't need to have a crisis to reach out.

And your faith can remain a source of strength through all of this. I respect your belief that God will help you face what comes. I would only add that being given strength doesn't mean you must never feel tired, frightened, or in need of help. Sometimes strength is allowing other people to carry a little of the burden with you.

You don't have to figure out the next five or ten years today. You only need to take the next step, then the next one. Oh, and just so you know, my husband was diagnosed in 2024 with mild PD. You are not alone!

My husband has had PD for over a decade. In addition to taking meds prescribed by your husband’s neurologist or movement disorder specialist, the main thing you will hear over and over again is exercise-keep the body moving.

I attend a PD support group that meets once a month for the partners only. At first I didn’t like it because other members spoke about things that hadn’t happened to my husband yet, but now I find it invaluable and actually look forward to being with these people. We share tips, experiences and it’s a safe place to vent where others understand. My group is through my local senior center. Maybe you can find one near you.

Best wishes,
Cindy

@cmdw2600 Thank you so much. You have given me so many things I can work on. Yes, I have a tendency to ask if he needs help with things. I need to back off and let him do for himself. The OT he goes to is educated in Parkinsons. So, many of the exercises he does are related to how to over come movements.
You have helped me more than you will ever know. Thank you

You are concerned about your sister needing emotional care and unable to help in person because you live a long distance away. Talking on the phone you feel is not enough emotional support for her needs. One way you could help is to arrange and pay for a health care worker to come serveral times a week to provide the emotional support you believe your sister needs. These home care professionals can also educate those at home in charge of her care as to what more they need to do to help her. I have a family member who works as a home care professional who helps physically and mentally and shares stories of how much she is appreciated helping the patient as well as fatigued and depressed family members.

@eojeda1 that was a beautiful letter and made more sense than one may think