I am starting to look at having in-home help. My husband’s symptoms are reaching the point where it may not be safe to leave him at home for extended periods and I need to be able to get away from the house from time to time whether it is for personal appointments or, quite simply, my mental health. We were talking about this the other day and my husband commented on how he likes having the house to himself for an hour or so occasionally and I responded with yes, I’d like that too. I don’t think he had really ever seen it from my perspective that I am never at home by myself. In my search for help, I am hoping to find someone who can take him to the gym once a week to give me that hour of uninterrupted time.

We first learned about a program that can help me find the right in-home provider about a year ago. I posted their number on the wall above my computer in anticipation of this day. I think that being able to finally admit to someone else that I need help will be a big step and, hopefully, things will start to fall into place. I’m also making a list of things I think we need help with, I’ll go over that list with my husband to make sure we are both on the same page. Once we agree on what in-home care for us should look like, I’ll make the call and get the process started.

I am grateful for the Parkinson’s Support Group that we attend. Through those meetings I have had the opportunity to meet many of the local service providers, potentially people who could send someone into our home. I can also look at the other CarePartners in the group who have taken this step ahead of me. I see how they navigated the process and it encourages me to try. I know that when I have questions about what to do next, they will have answers, things that have worked for them. My fellow CarePartners are the best resource of all for me on this challenging journey.

This is easier said than done for me, especially at certain times of the year. For some reason, all of my check-ups seem to fall within a month of each other. I have my semi-annual dental appointment scheduled in two weeks and my annual physical in three. I just received a notice from my ophthalmologist that I am due for an eye exam and it’s time for my mammogram. On top of that, I got a note from the doctor saying that I need to schedule a colonoscopy. How on earth can I find time for all of this?

First and foremost I must accept that these appointments are as important as the appointments I make for my husband. Then I need to follow-through. I can work within my schedule to try and consolidate appointments, maybe set the mammogram at the same time I visit the clinic for my annual. If I remember that the colonoscopy only happens every five to ten years, that helps me put it into perspective and I can push it a month or so to make things a bit less busy. My eye exam can hold for a while too since I am not having any issues.

When all of the notices started to arrive, it stressed me out. I let the numbers of needed appointments overwhelm me. My first response was to put them all aside and ignore them but that isn’t in my best interest nor is it conducive with providing good care for my husband. I need to be healthy to support him in staying healthy. When I stop and approach it from that mindset, I find that it is all manageable. I’ll be working on scheduling for my care today.

I sometimes get caught up in the daily challenges of caring for my husband and forget to look for the positive side of it all. I love the fact that he is still here with me, and we still do many things together. I love cuddling with him and sharing special memories of those things we may not be able to do anymore. I actually like the feeling I get from being able to help him and know that I am making his life easier as face his Parkinson’s Diagnosis together. The positives of CarePartnering are sometimes outweighed by the realities of his progressing symptoms, but I need to treasure those moments when we are connecting again like we did pre-PD.

Parkinson’s is progressive which means that my husband’s abilities will decline and his needs will increase. As his primary CarePartner, that means my load will increase too. He has good days, when he does many tasks for himself, and bad days, when he relies more on me for help. The changes are happening slowly for us, rather like a lobster in pot of boiling water, will I recognize my limits before the burden overwhelms me? 

I found a great tool on AgingCare.com called the Caregiver Burden Self-Assessment. It asks a number of questions about how I feel while providing care for my husband. The survey helped me honestly look at my perceived burden and gave suggestions on what I might need to do to care for myself as things progress. I first took the survey a year ago and again this past week. It shows that my burden, while still in the mild to moderate stage, has almost doubled in the past 12 months.

Finding the burden is easy for me, finding the blessing can be too if I take the time and remain honest to myself. I truly am thankful for the opportunity to care for my husband and for all the good things we still share. I will do my best to recognize that time when the burdens start to take that away from me and look for the help I need before it is too late and I am completely overwhelmed.

If you would like to take the survey yourself visit Caregiver_Burden_Assessment.pdf (agingcare.com).

It’s summer, it’s hot and I have a ton of things that I have to do outside on top of everything I do inside anyway. The task list seems endless. Unfortunately, or perhaps not, this heat makes me want to sit in a cool spot and relax rather than tackle chores. It will all still be there tomorrow anyway, what’s wrong with taking a day off? Nothing at all!

There are things that I have to do everyday that involve providing care for my husband, and things that I can put off. It is important, no vital, to recognize which is which. I am learning that it is okay to take a break and let the less important things go sometimes. The lawns can look a little shabby and the house can be a little dusty, it’s all okay as long as our basic needs are being met.

As a CarePartner, I seem to think that I am responsible for everything all the time. That is too much of a load for anyone to carry. If I try to do it all, nothing gets done well. If I respect my body and take that rest on days when I need it, the things that matter happen and I am able to take on other tasks when I have the capacity.

This is a repeat of something I wrote a couple of summers ago, but I thought it needed to be revisited. Today is one of those low energy days for me, I hope you enjoy reading this and can find a moment to take a rest yourself!

I wear a smart watch that allows me to answer phone calls and texts. It helps me feel good about being away from my husband knowing that we are still able to connect. It also has features that support my safety like fall detection and SOS calls.  My husband also has a smart watch but his is strictly for fitness tracking his steps and workouts. My hope is that he will want one like mine when he realizes the advantages, it’s a remote hope at best. Some of our friends utilize emergency alert buttons you can wear around your neck to help them feel safer. We have smart appliances that make many of our tasks easier and more automated. Our grandson has a car that practically drives itself, that day isn’t too far off for all of us. I do wonder what happens when the devices get too smart for us, but that’s a thought for another day.

My husband had DBS surgery and when we replace his battery/control in a couple of years, I expect it will be adaptive. It will read and respond to his physical needs and adjust automatically as opposed to the current manual control. There is great work being done on other assistive technology devices such as gloves and glasses that may help manage symptoms for some people. Telehealth alone is allowing more access to the medical supports we need. My husband exercises through interactive Zoom classes, something we hadn’t even thought about just 5 years ago.

The newer technologies may be scary but they may also give back some of what PD is trying to take away. Much is happening in the PD world and I need to stay informed so I can help my husband embrace whatever tools come our way that might make our journey easier and out lives better.

Learn more about adaptive technologies and the possibilities at this link Assistive Technology For Parkinson’s Disease (occupationaltherapybrisbane.com.au).

Vacations are not relaxing anymore. We have made a lot of accommodations to our home to make life easier for us and those accommodations can’t come with us. Going anywhere takes more time planning as I arrange for hotels and transportation in advance of any trips. Even with all the careful work in advance, once we get to the location it takes a day to adjust to the new environment. Often, I find that what I was told about the site may not be quite accurate. I think of rooms where the grab bars are being used as towel racks and the only restaurant onsite isn’t open for breakfast. The time the bathroom was so small that I had to stand in the shower stall to help my husband get off the toilet. I always try to plan for the best but still need to be ready for the worst to happen.

Going on vacation is not only exhausting for me, it wears out my husband too. I find that the optimum timeframe for a vacation is 5 days. The first day is travel and the second day is adjusting to the new location. Days 3 and 4 we actually get to enjoy our stay, as much as possible in our current reality. Day 5 we are travelling home and then he spends a couple more days just recovering from the trip while I am getting caught back up with chores. Maybe it just isn’t worth the hassle anymore?

I recently started thinking about what a vacation might mean, what would I need to truly relax? It would be someone else preparing our meals. It might mean visiting a pretty location and taking a walk. It would definitely mean taking a break from chores to sit in the shade and read a good book without feeling guilty. There are lots of local restaurants I want to try, we have some great parks and a lovely riverwalk, I have lounges and a shade tree in my own backyard. I can easily create this at home, I think it’s time I figured out how to take a staycation.

At a recent CarePartner get-together, we were discussing what to do when someone takes a fall and can’t get up. One suggestion was call a neighbor, another was call 911. It was at this point that one of my friends and a former support group leader gave the advice “Give yourself permission to” in this case it was call 911 for help. Sometimes it’s okay to call a neighbor, other times it is best to have a fully trained professional. The important point here is to give yourself permission to assess the situation and make the call you feel is appropriate regardless of what your PwP is saying. 

I think this can be extended beyond emergency situations. There are times when I want to do something and my husband doesn’t agree. I tend to defer to him, especially in issues that involve his care. Something for both of us to remember is that while he knows his capacity in the moment better than me, I can factor in what I have to offer. Our relationship has always been one of joint decision making. That will, unfortunately, need to change as I am tasked with more responsibility. It is time for me to give myself permission to make some of those decisions alone.    

So here goes, my list of permitted activities. I give myself permission to make my own health a priority. I give myself permission to ask for appropriate help when I need it whether it is caring for our home or providing care for my husband, regardless of what he says. I give myself permission to find ways to relax both with my husband and on my own. I give myself permission to grieve the little losses I face everyday as long as I remember to celebrate the victories too. I give myself permission to have a life that includes more than my role as a CarePartner and to know that it’s okay to do that.

Oh my goodness, I can’t say this enough. My husband has good days when he is almost like he was pre-PD and then we have bad days, he calls them low-energy days, when nothing seems to be working well. They happen randomly and often catch me unawares. Plans go out the window as I flex my schedule to meet him where his capacity is on any given day. It’s an ongoing challenge as I attempt to be ready for whatever PD throws at us.

Just living everyday requires flexibility. Anything out of the ordinary that happens, even if it only brings a variation change to our schedule, means flexing somewhere to meet the demands of the day. Changes seem be a greater challenge for my husband since he was diagnosed with Parkinson’s Disease and that usually means I need to find the flexibility to support him through it. I can adapt more quickly and easily and then I can help him come along with me.

I still make plans and schedule things but understand that they need to be open to change. My husband’s symptoms are best controlled in a stable environment. His life is often rigid, just as his body can be at times. I am still flexible in both mind and body and I need to use that to make our lives work. I may not always be happy with the changes I need to make, but I understand the necessity of them. Flexibility is the key to meeting my husband where he is at any given time so that I can walk alongside him in this shared journey.

My husband and I watched a webinar on chronic pain and PD yesterday. They specifically talked about lower back pain; it seems that my husband is part of the 80% of People with Parkinson’s who have this complaint. What frustrates me is that many of the things they were recommending were things I had suggested to my husband, suggestions I felt he was ignoring. Now, because he hears about them on a Parkinson’s Foundation program, they are great ideas and worth trying. It was as if he had never heard of these interventions before. Rather than get upset, I simply turned to him and said, “Wow, too bad we didn’t think of these sooner.” He knew what I meant, and we both had a good laugh.

Some of the things that I find frustrating are within his control but many are not. For example, I get frustrated when he needs assistance but won’t take it and also when he needs to be doing something for himself and asks for help instead. I forget that he has good and bad days and his capabilities fluctuate. There are pieces of this disease that can be extremely frustrating for me, the slowness, the stiffness, the soft and muffled speech, the poor posture, all things he can’t help. I hear myself encouraging him to stand up, speak up, slow down and walk with purpose in an attempt to be helpful but I realize he must feel frustrated too.

Probably the most difficult thing about this whole situation is the fact that it is chronic. At this point there are no magic cures and we have accepted there may not be in our lifetime. It frustrates me terribly that no matter how hard we work, and my husband is working very hard to fight this diagnosis, we are not going to win. Parkinson’s Disease will most likely be with us until the day he dies. In the meantime, I am thankful that he is here with me and I will remember to use laughter, not anger, to deal with my frustration while we work together to make every day matter.

Accepting my husband’s diagnosis terrifying, but the reality of it was somewhat easy at first. In those early years, not much was changing. We were both still working, he had a slight tremor but was still very capable of caring for himself. We were able to maintain the status quo, his Parkinson’s Disease was not really impacting our lives. His symptoms, all physical, were progressing slowly. As time went on, however, he began having trouble with his handwriting and his voice got quieter and muffled. Eventually it became too difficult for him to work and he retired. It was obvious that his PD was beginning to control many of the decisions we were making.  

I had to modify my life to fit the increasing demands of this diagnosis if I wanted to continue living with this man. I cut back to half-time at work and then retired early so that I could be at home with him. I started going to exercise classes with him and we joined a local support group. Our social network was changing. It was difficult realizing that we were not going to be able to do all the things we had planned on doing in retirement, but it was our post diagnosis reality and I made peace with it.  

We have given up many of our former activities, yet are still able to find fun things to do together. As it is, I try to plan only one outing or appointment per day, otherwise it becomes too much work for me as the CarePartner and overwhelming for my husband. I also have some things that I do just for me, things that allow me to escape from the responsibilities of being a CP for a little while. I try to be conscious of not exhausting either of us and still find ways to live a full and rewarding life together in spite of PD. My pathway may not be what I expected from life, yet it is what works for me today.