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.

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.

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?

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?

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.

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.

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.

It’s easy for me to get overwhelmed and then every little comment seems to be negative. I had a few of those conversations recently and I know I reacted inappropriately, letting my emotions get involved. First, let me share an interaction I had with my husband that made me shake my head. We were discussing trading cars when my husband turned to me and asked, “how much longer do you think you’ll be driving?” I was flabbergasted. I reminded him that I am a bit younger than him, I don’t have Parkinson’s, and am not having any difficulty driving, why would I be thinking of giving it up? I can smile about it now, but in the moment, I had to walk away to keep from grumping at him. I definitely overreacted.

Now, on to another comment that I could have handled differently. A representative from our long term care insurer calls once a year to check in and make sure that the coverage is still needed. It struck me as odd when the woman asked if he had recovered or if he still needed assistance. I answered all of her questions but after I hung up, I felt angry because she should understand someone with PD is not going to get better nor are his needs going to get less. Again my emotional reaction was more than the situation called for.

I realize that if I stop and consider where these comments are coming from, they really wouldn’t upset me at all. My husband was remembering when we had this conversation regarding his ability to drive. He didn’t mean anything negative, he simply wondered where I was on this spectrum. On the other hand, the young woman from the insurance company was doing her job. She has a script to follow and would have asked me the same questions regardless of her knowledge of his PD diagnosis. Hopefully the next time this comes up I will take a breath and smile, not bristle at their words. There are enough valid things happening to upset my days, I don’t need to take on any extras.

How do I say this kindly? The chances of my husband outliving me are very slim due to his age and his diagnosis of Parkinson’s Disease. Because of this, I have slowly been moving all of our accounts into my name or making sure they are in both of our names with me as primary contact. At first it seemed cold, almost calculating, for me to take everything over and yet it is much easier for me to do it all now than it will be when something drastic happens.

I have run into situations recently that reinforced my need to take care of these things. We bought a car together 6 years ago. At the time, we told the dealership that I would be the only driver and took out a joint loan through a credit union yet everything was put in my husband’s name. I went in earlier this month to pay off the loan and close out the account only to be told that, while I could pay it off, he would need to be present to close it. In another case, I got to call our internet provider for service issues yesterday and they had to confirm the account with my husband’s phone number before talking with me. It seems everything with them is in his name even though I am the one they have been dealing with for years.

Needless to say, I am reviewing all of our accounts to make sure that I am the primary contact. I thought I had done this already but obviously not. I don’t want to have to face this after something happens, it is much easier to be as prepared as possible ahead of time. Should he pass before me, I want to be able to grieve without the added stress of financial worries, I owe that to both of us.

We used to have big family gatherings for the holidays. My sister and I traded hosting the events which usually brought anywhere from 12 to 20 people together. It was fun but also a lot of work. Shopping, cleaning, cooking, made it a very busy time for me and my husband. Added to our already packed schedule were parties at friends’ houses, almost always in the evenings. As his Parkinson’s symptoms progressed, recovering from the parties took as long as preparing for them. I realized that maybe celebrating this much wasn’t the best way.

It was time to step back and look at what worked and what didn’t. I still wanted to get together with family in some capacity but the evening events with our friends had to go. I reached out to them and suggested that we might find other ways to get together, perhaps in smaller groups for lunch at a restaurant, and that works somewhat. As for family events, we have pared down to a simpler process and it has become more of a potluck buffet rather than a sit down dinner. This Thanksgiving I only invited our immediate family, just 7 of us in total, and it was great.

I decorate our house more simply and carefully choose things that I think have more meaning. I try to make some of our favorite foods even if it is for a smaller audience. I want family and friends to know that we are still here and love them all. We need those connections as we travel on this journey and it matters that they understand how things are changing for us since we may need more support in the future. I have figured out that bigger isn’t always better and that sometimes celebrating with just the two of us can be the best party of all.