The non-motor symptoms of Parkinson’s Disease are more difficult to understand and treat.

My husband presents with mostly motor symptoms. He has tremors, stiffness, freezing of gait, balance and speech issues. He does have mild cognitive impairment, which may be related to his diagnosis of PD or to his age, he is in his 80’s now. The physical challenges are easier to diagnose and treat. He controls many of his challenges with medication and through deep brain stimulation. However, my father was a classic example of what the non-motor symptoms of Parkinson’s can do to the thought processes of the brain. He was fully engulfed in hallucinations, delusions and paranoia early on. There were no medications to help him find reality in his days and it was extremely challenging for all of us as we tried to make sense of what was happening.

Thankfully, much has happened in the world of dementia and Parkinson’s research since my father was diagnosed back in the 1980s. A lot has been done looking into Alzheimer’s Disease and much of that applies to PD Dementia too. Some of the best work is in recognizing, understanding and supporting mental health for everyone with Parkinson’s and their loved ones. There are medications and behavioral treatments that can be useful for some. Life with PD Dementia or Lewy Body Dementia does not have to be the same nightmare it was for my parents.

The essential component here has to be communication. Even though I know it must be terrifying for my husband to consider what might be coming, I have to be willing to talk honestly with him about his mental health whether it’s anxiety or more serious concerns about dementia. He needs to know that it scares me too. If he does develop hallucinations or delusions, it is not my job to keep him connected to reality but instead to walk alongside him in whatever reality he is experiencing to make sure he is safe and calm. It is my responsibility to let his medical team know what I am seeing. He may not always be able to accurately assess his cognitive challenges, I need to watch and report so the best treatment plan can be created. Then I need to try my best to be patient and understanding as I help him follow it.

For  more information, see the section of the Parkinson’s Foundation website simply entitled Dementia.

Medical care for the CarePartner is just as important as medical care for the Person with Parkinson’s.

I have been dealing with some medical concerns of my own the past couple of weeks and it reminds me that I need to have a good medical team that I can trust just as my husband does. My current Primary Care Provider is a Physician’s Assistant. She is competent but she only works 3 days a week and has coverage from other members of the clinic team when she is not there. It creates a rather piecemeal approach to care and is not really working well for me, yet I don’t know quite what to do.

This situation came to a head last week when I was having a problem with one of my medications and reached out for advice. My regular PCP was not there so I got to speak with one of her covering professionals, a Nurse Practitioner. We had a great conversation and created a treatment plan that included blood tests. When the test results came in, a different Nurse Practitioner interpreted them and made recommendations of her own that were contrary to what I had been told just 2 days before.

I spend a lot of time and effort attempting to make sure my husband has the best care available which can mean that I often don’t have the capacity left to face my own challenges. Yet, if I am not taking good care of my medical needs then how can I be at my best when he calls for help? It has been over a week now and I still haven’t heard a word from my actual PCP. I’ll be reaching out to the office manager later today to see if she can help me sort this out. If not, it may be time to step back and address building a new team for myself, if only I can find the time and energy.

Parkinson’s and Pro-biotics can be a useful combination when trying to manage gut issues.

My husband recently had a bout of intestinal upset accompanied by about 2 weeks of intense diarrhea. We worked to keep him hydrated and, since he never exhibited a fever, he didn’t visit urgent care until it was too late for them to be able to detect what was causing the problem. As things started to settle, his caregiver mentioned that probiotics might be helpful in getting his gut back to a normal state. Knowing that my husband is not good at eating lots of green vegetables nor does he like yogurts or pickled foods that might contain live cultures, I decided to try a probiotic pill. We spoke with his neurologist about this and she agreed that it couldn’t hurt.

Let me back up a bit to say that before this episode my husband used Miralax regularly to keep things moving. He went off it when the diarrhea hit and hadn’t started it again. The probiotic we chose was a generic version from the local drug store. He took one a day with his breakfast. We saw a change in his movements within about a week, the consistency was easier to control and he was more regular. We decided to try adding the Miralax back into the mix, but it seemed to make things worse so are now stopping the laxative to see what the probiotics can do on their own. 

Studies have been done on the gut microbiome and how it influences Parkinson’s Disease. I really didn’t look into that topic choosing to focus instead on the impact to his bowels and issues with constipation. So far things are looking good, if he also gets better absorption of his carbidopa levodopa, then that will make it even better. Anything that makes our daily lives even a little bit better is a win in my book.

My information for this blog came from observing my husband’s experience and the following two websites: https://www.apdaparkinson.org/article/probiotics-and-parkinsons-disease/ and https://www.nccih.nih.gov/health/probiotics-usefulness-and-safety. I am not advocating for the anyone to use Probiotics but do encourage everyone to research this topic.

Unexpected things will happen to you. Do you have a back-up plan of care for your loved one?

It doesn’t have to be anything serious; I had a head cold last month and since I am my husband’s primary caregiver, he caught it from me. The cough and congestion were minor for me but it could very well have led to pneumonia for him. Would it have helped for me to try to isolate myself from him when we live together in a 1600 sq ft house? That’s doubtful because by the time I realized I was sick he’d already been exposed. I suppose he could have gone into respite, but what else might he have been exposed to in that setting? It’s a complicated situation with no really clear or good answers.

This topic often comes up when I meet with fellow CarePartners. It is not unusual for our loved ones to end up hospitalized when we have an emergency ourselves. I could call our children, but would they be able to provide the care he needs 24 hours a day for an indeterminate amount of time? Respite care might be available if local facilities have bedspace but someone would need to make those calls and arrangements. What is the best way to be prepared when I don’t know what I am preparing for?

One solution for us might be to call the agency that currently provides our in-home care. We have a care manager who should be able to help us figure out what to do. I have a friend who works in placement and she would definitely be a good resource. I know some members of our PD network have made contact with facilities or have already used respite just to find out how it works.

Our first step is going to be to sit down and discuss this challenge openly. Together we can create a plan of action listing contact names and phone numbers. Then I will give a copy of our plan to each of our children with the hope that they never have to use it.

Finding moments of gratitude for what you are sharing with your loved one can help keep you grounded during those difficult times we all face.

In the process of caring for my husband, I can lose sight of the positive aspects of our daily lives. So many of the things we do have become routine, I can forget what keeps us together in the first place. Dealing with the demands of our current situation can be daunting, however, if I just stop and take a moment to find gratitude for the opportunity to still be with this amazing man, my load lightens. If only I could share those thoughts my message to him would be:

“Thank you for allowing me to come along on this journey, no matter how difficult it becomes for both of us. Thank you for always doing your best to take care of yourself and to continue fighting this diagnosis of Parkinson’s Disease. Thank you for your patience with me when I have run out of patience for either of us. Thank you for trying to understand and accept the challenges I face as I try to help you with the challenges you face. Thank you for loving me even when you may not like me very much because I am too bossy or too grumpy. No one can predict where life is going to take us, I am so grateful that I am getting to share mine with you.”

My husband did not choose this diagnosis, but he did choose to ask me to share it with him. I am honored that he lets me be here and that he accepts me as his Partner. I will try to walk in gratitude for the opportunity rather than frustration that it has happened to us. It’s a tough road, but we can travel it together accepting whatever comes in this uncertain future.

Changing holiday traditions, passing them on to the next generation, is a normal component of successful aging and doesn’t necessarily happen just because your loved one has a chronic illness.

The holidays are over and it’s time to reflect on what went well and what didn’t. Things this year didn’t look like they used to. I could blame this on my husband’s diagnosis of Parkinson’s Disease but that would be a lie. Yes, his symptoms have impacted some of our celebrations, but much of what we do is based on life changes that have little to do with his PD. Family dynamics have changed, we’re both older and not able to do as much, the things we once did aren’t relevant or fun anymore.

Parkinson’s is an easy scapegoat when the actual change agent is reality. So many things we used to do were time consuming and hard work. As I get older, I realize that I would rather spend that time on things I enjoy and find relaxing. Putting lights on the house is a great example. It is a two person job that was usually under my husband’s direction. I’ve been trying to keep it up by myself for a few years but realized that it just may not be worth the effort. To be totally honest, the stress of doing some of these past tasks outweighs perceived benefits and no one notices the change except for me.

The older I get, the less I enjoy big, noisy parties. There is also the reality that we are not always going to be here and our children are going to have to figure out their own ways to celebrate. I think it’s okay for that to start now. Smaller groups in quiet daytime gatherings with less trappings are our new reality and I find that it works better for my sanity. I like having a chance to visit with family rather than spending days cleaning and cooking for them and then a day cleaning up after. It seems our holidays have evolved into a more personal way to connect and isn’t that the most important consideration anyway?

Anticipation and assumptions can create unnecessary anxiety for you. Anticipate and assume good outcomes when facing difficult conversations. (Difficult decisions, part 2)

My last message was about a difficult situation I thought I was facing regarding the purchase of a new car. As it turned out, I was the only one making it difficult. I had decided that my husband would want to be involved in the entire process before asking him. I was also convinced that it would be exhausting for both of us and was, perhaps, beyond my capacity to manage. I was so wrong.

When I finally had the nerve to open the conversation, my husband was quick to suggest that I do all of the legwork ahead of time. He didn’t want to visit lots to look at cars, especially since he wouldn’t be the one driving them. If only I had talked to him sooner, I would have saved myself more than one sleepless night and lots of worry. We discussed what we both felt was needed in a new car and I was on my way.

What I hope to remember for next time is that we are going to have to talk sooner or later and the longer I put it off the more difficult I make things. Opening the door to an honest conversation is so much easier when I don’t let anticipation anxiety get in the way or make assumptions on how he’ll react. Starting the discussion in a positive manner promotes a good outcome, lightens my load, and allows us to work more effectively as a team. Isn’t that one of the basics of being a good CarePartner anyway?

Difficult decisions aren’t always about Parkinson’s, it may also be a practical choice that needs to be made.

We are looking for a new car. My husband has mobility issues which would impact his ability to wander around a car lot and that would also make the negotiation process challenging. We did this game about seven years ago and I feel that the salesperson took advantage of us because of my husband’s condition. I won’t go into details, but we walked out with several unnecessary add-ons and a much bigger car payment than I expected simply because there were communication issues. I don’t want that to happen again.

How do I navigate this tricky situation? I have been looking at cars on-line for the past month and have decided I want to check three different models but need to make sure they are appropriate for him. I need to buy a car that he can get into and out of easily and one that allows me to load a walker or wheelchair. It also needs to fit in our garage. Would it be best to create a plan to visit one dealer a day to see what they have or should I try to do it all in one fell swoop knowing it will exhaust both of us?

I know that the first step needs to be sitting down with my husband to express my concerns about the difficulties of this exercise and get his input. I may find out that he doesn’t want to be involved more than he has to anyway and that all of my worry about excluding him has been a waste of energy. I won’t know anything until we talk so that needs to happen soon. Guess it’s time to put my worries aside, brew a pot of tea, and invite the difficult conversation.

There will be things you don’t want to say in front of your loved one with Parkinson’s Disease. This is where your support network of fellow CarePartners becomes vital.

We connected with a support group for Parkinson’s many years ago and it has been a wonderful resource as my husband’s disease progresses. We have learned much about this illness by being with others on similar journeys. The absolute best piece of it for me though has been connecting with other CarePartners. When we are able to gather without our People with Parkinson’s and talk about the role we play as Partners, it is amazing. Just as my husband needs to know that he is not the only person with PD, I need to know that I am not the only one feeling lost as I try to provide appropriate support and care.

My husband has been my best friend and confidante for decades but in this part of our journey things are happening that I just can’t talk with him about. While his diagnosis impacts us both, the challenges and emotions we encounter are different. Only someone who is facing the same difficulties can fully understand. How can I complain about loss when he is living it? How can I share my fears for a future that neither of us can predict? How do I express concerns about the daily toll this disease is taking on me without making him feel worse? These are the type of things I can say to another CarePartner and we can laugh or cry about them, which makes it almost okay.

I was seeing a therapist and keep her number in my back pocket just in case, but I have found that spending an hour with another CarePartner is much more useful. They get me when I talk about being exhausted at the end of each day. They understand my exasperation about the ups and downs of my husband’s good and bad days. They hear my pain, my loss because they share it. Finding a support group for my husband was good, finding a support network for myself was essential.

Hydration is essential for all of us, especially during the winter months.

It’s easier for me to stay hydrated during the summer when it’s 80 degrees and I’m out in it a lot. Less easy are these winter days when I may not even get outside at all because it’s so cold and dreary. I tend to choose hot drinks rather than cold, which would be okay except they often have caffeine which dries me out more. December brings holiday drinks that may have alcohol in them, another drying factor, and then I wonder why my lips and hands are so dry all the time?

One of my husband’s exercise coaches gave him a good tip which I try to use myself. She matches any non-water drinks with an equal amount of water. If she has a soda, she has a glass of water to wash it down. If she has a cup of coffee, she follows it up with water. I am not able to follow this as closely as she does, but it has increased my awareness of what I am drinking. I also make sure that we both have a glass of water with every meal, even breakfast. If I wait until I’m thirsty, it’s just too late.

An article on the Cleveland Clinic Healthy Essentials website mentions that being dehydrated can make me feel fatigued, dizzy, cranky or anxious, things I can minimize simply by drinking enough water. Being a CarePartner can be tough and it’s important for me to do whatever I can to make sure my body is working properly so I can overcome those challenges. It seems like drinking plenty of water could be an easy solution to some of the difficulties I might face.

To see the entire article on hydration and seniors, click here Drink up.