Author: cptricia

Self-care is self-preservation. Putting your own needs first actually frees you up to meet your loved one’s needs more fully.

I was thinking again about how busy my life as a CarePartner can get and the different hats that I wear based on tasks I need to do. This train of thought often leads to the question of which I might be able to take off. I know that I already have help with my yardwork, but what if I also had help with my house? After all, I am retired, isn’t that the time when I am supposed to be taking life easier? Why am I insisting on trying to do it all?

Is having a house cleaning service a “need”? Probably not, but it is a possibility. If I have someone helping with the cleaning, I can let go of those duties and use that energy in other ways. Granted it’s not a huge task, but it is a task that I can identify and delegate. It would free up a few hours every week, much needed hours that could be used in better ways caring for myself.

What would I do with that extra time? I really don’t know, but it would be so nice to have to figure it out. I know I would have to be mindful not to let it be taken up by additional tasks in caring for my husband. Maybe I would find a new hobby or have time to explore current ones. To actually have a couple of extra hours without any chores assigned to them, isn’t that what retirement was supposed to look like anyway?

Parkinson’s Disease will change your loved one and the relationship you share. Knowing this in advance can help you adapt to the changes as they occur.

When we first met, I was so impressed by my husband’s presence. He was intelligent and strong with a calm and capable demeanor. Working together I found him to be supportive and fun loving. We started as friends and, both having been in bad situations before, we each had a solid understanding of what we needed from a good relationship. Our friendship grew into something more as we found our personalities and skills truly complemented each other. It was a good fit, our life as a couple was wonderful, then Parkinson’s joined our team.

The changes brought on by his diagnosis were slow and not very noticeable in the beginning. The tremors started on his left side and were mostly controlled by medication. As things progressed, our roles began to flip with me taking over as primary on many tasks and my husband being my helper. We realized that might not be the best idea when I tried cleaning the gutters while he stabilized the ladder for me. Did I mention that his primary symptom was tremors? For safety’s sake (his and mine) many of those tasks eventually moved into my realm. With responsibilities shifting, there was also a power shift. The more I did, the more I had to decide how and when those things would be done and he had to let them go. It was challenging for both of us.

This shift in direction has changed the dynamic of our interactions. As he becomes more dependent on me for daily activities, out of necessity not desire, it influences who we are as a couple. It’s a delicate balance as I try to take on more without taking away from who he is. Stepping back when I’m not really needed, encouraging him to do what he can, giving opportunities to try challenging tasks, are all ways that I can support his dignity and help him express his independence. As is my understanding that what we are experiencing is not intentional but is all due to the disease he carries. Knowing why it’s happening definitely helps me accept the changes in him and in my role as his wife and CarePartner.

Just when you think things are going well, something happens to remind you that you can never let your guard down completely.

My husband had a fall yesterday. It had been several months since his last fall and this one caught me off guard. He was getting up from a stool in our kitchen/dining area when he said his right leg gave out and down he went. He bumped his shoulder against our dining table and landed on his hip. I wasn’t in the room with him, having just left after we finished an afternoon snack. I heard the thump and thought he had knocked the stool down. The stool was fine, it was my husband who was on the floor. 

Rushing in, I immediately reached out to help him up and then stopped myself. I actually had to say the words, “No, I can’t help you up. I can help you roll over though”, which gave me the opportunity to rethink what I was doing. It also gave him a chance to evaluate the situation and figure out what needed to come next. I then went ahead and helped him get on his hands and knees and from there he was able to pull himself to a standing position. If that hadn’t worked, calling 911 was my next step.

Things have been going quite well for the past couple of months. My husband has even been helping out with the odd chore, something I thought was impossible for us. We’ve been having better conversations and even planned an overnight trip later this month to celebrate our anniversary. Is it any wonder that just when I had let things go a bit and was taking some breathing space for myself, Parkinson’s had to rear its ugly head and remind us that it is still very much in charge?

Worry, anxiety, anticipation can be as exhausting as physical activities. Find ways to give yourself a break from these stressors.

I look back at my day and wonder why I’m so tired. I don’t recall doing anything that was physically taxing yet I feel like I’ve run a marathon. It was a day when we didn’t have any outside help, could that be the reason for my complete exhaustion? My husband was having a low energy day so I was more on alert than usual, watching him to make sure he was okay, perhaps that has something to do with it all?

Taking a break on those worry filled days would be great, but how? Most importantly I need to recognize what’s  happening. Too often I am so caught up in the moment that I can’t see the bigger picture. Taking a break has to start by simply taking that break. Give myself a moment to think about what’s going on. If my husband is having a tough day, is there anything more I can do to make it better for him? The answer is usually no. Next I need to ask if there’s anything I can do to make the day better for myself. That answer is usually yes and involves either taking a walk, sitting with a good book, or maybe just some deep breathing. Whatever will help me break the cycle of stress and anxiety. Once that’s done I can get on with my day and let him be.

It may sound self-centered, but unless I am willing to actively put my needs first, I am not able to be here fully for my husband. I know that I have said this before, yet sometimes I forget that my mental and physical health is more important to the dynamic of our journey than his. My husband is on this PD trajectory and, while we can’t control it, we can work together to fight it. My worry, anxiety, and anticipation of what is going to go wrong next are stressors that negatively impact our lives and are things I can control. In order to be here alongside him, I must take care of me. It’s not selfish, simply a fact of my life as a Parkinson’s CarePartner.

Aspiration Pneumonia is a leading factor in the death of up to 70% of People with Parkinson’s Disease.

Swallowing is kind of an important skill to have. The ability to get foods and liquids past the windpipe or trachea and into the esophagus is complicated and involves different muscular contractions that do not work as well with PD. This difficulty is known as dysphagia, for Parkinson’s patients it is usually oropharyngeal dysphasia, which refers specifically to the transfer process. That muscular process that my husband uses to get food and water into his body is wonky and causes him to aspirate or allow substances to enter his windpipe. This often leads to aspiration pneumonia which can kill him. I had never heard of this before it was listed as a contributing factor in my father’s death from Parkinson’s.

We are working on a few different things that help but unfortunately my husband still has episodes of aspiration. He is in speech therapy, recognizing that the muscles that help him speak are also the muscles he needs to chew and swallow. Another technique he uses is breathing practice which he does on his own, he calls it his huff and puffs. We ordered a tool called an EMST150(Expiratory Muscle Strength Trainer) that he uses several times a week. Blowing short puffs into the device helps build muscle strength in his throat. My task is to have an awareness of the foods we eat. I work with him to make sure that anything I put in front of him is easy to chew and swallow.

He has undergone 2 swallow tests in the past few years, his most recent showed that he appears to be aspirating small amounts of liquids even without the cough or choking. Our next step may be to thicken his drinks but I don’t think we’re quite there yet. In the meantime, I try to be present whenever he is eating or drinking and he does his part by exercising those muscles.

Find more about the connection between aspiration pneumonia and PD in this study Risk and mortality of aspiration pneumonia in Parkinson’s disease: a nationwide database study.

Losing friends to this disease is the most difficult component of being part of a Parkinson’s support network.

It happened again, we lost a friend from our support group. I grieve for our loss and my heart goes out to his wife, one of the most compassionate and caring Partners I have met. I hate these goodbyes because they remind us of the inevitability of the diagnosis. At the same time, had it not been for my husband’s Parkinson’s Disease we would never have had the chance to know this wonderful couple and share in their journey. I am so grateful for that opportunity.

We first met this gentleman at a movement and speech class. He was a constant in the group working to overcome an already soft voice. He and his wife joined us in other support group activities sharing meals and workshops. She brought much grace as his Caring Partner and often showed me ways I could be more patient and kind through her example. It was this wonderful woman who introduced me to the concept of the tiny cuts we experienced every day watching our husband’s disease progress.

When we first started attending PD support groups my expectation was to learn more about what was ahead for us. I was hesitant at first not sure I really wanted to know our future. I now understand that it is not our future that I found but our present. Fellow travelers on this journey who were able to share their stories of meeting the challenges we all faced. These folks actually understood us more than our family ever could. Yes, it’s difficult to say goodbye, but without the loss we wouldn’t have memories of the good times we shared together. And they will always be a part of every group gathering even if it is just in my heart.

Don’t blame yourself or look too hard for solutions when your loved on is having a bad day. Blame the disease.

My husband was having what he referred to as a “low energy” day. He was tired and not interested in anything. His balance was off and nothing seemed to be working well. He didn’t feel good enough to exercise and spent most of his day on the couch napping. It was difficult for me to leave him alone, I kept checking in to make sure he was okay. I wasted a lot of my energy trying to figure out why he was feeling so exhausted. When he woke up the next day feeling okay again I realized that it was nothing we had done, his diagnosis of Parkinson’s Disease was the culprit.

If it isn’t enough that this disease makes him tired, the medications he takes also play a part. He has always said that carbidopa levodopa makes him sleepy about 45 minutes after he takes it. The dosage doesn’t seem to matter, even with only one or two pills he gets drowsy when the meds should be kicking in. He can’t skip those meds until he’s feeling better, so we always get to add that to already low days.

My husband’s condition can drain me if I let it. I am finding the best solution for those bad days is to let him be. It may be difficult for me to step away, but if it is something more serious we will know soon enough. If it’s a lower energy day for him, rest is always the quickest way through. My hovering, trying to fix something that isn’t really broken only serves to make things worse. Evidently there are days when the best thing I can do as his CarePartner is to let things go and understand it’s just his PD, even though that’s really hard for me.

You are going to be told at the beginning of this journey that the most important thing you can do for your loved one is create a medical team. It’s not that easy.

We have been on this journey for over 15 years now and I have written before on the topic of creating our team of providers. It is a concept that I have never understood but have finally made peace with. I do think it would be wonderful if all of the professionals working with my husband communicated with each other or perhaps had team meetings where they would discuss his challenges. I know that this is a totally unrealistic expectation and congratulate anyone out there who may have found some semblance of this on their journey, we certainly haven’t.

What we have found are professionals who are able to provide different pieces of his treatment. He has had multiple physical therapists over the years, they keep moving on. He has had a couple of different occupational therapists but they never really clicked with us. The only constant people on his “team” are his Primary care physician and his Neurologist but even those people are the second versions when his first folks retired. The connection between these two is that they both work for the same health organization but I’m pretty sure they’ve never discussed my husband’s care in any way.

What I have finally concluded is that his “team” is simply a list of phone numbers for medical practitioners, or at least their offices, I can call when things go haywire. We keep records of all his contacts with each of them and can share as needed with other professionals he sees. He is the connecting factor on this team and the rest of them are simply extras brought in to play when it is their turn. Asking for more than that is simply an exercise in frustration and futility.

Trying to stop someone from falling is like trying to stop a moving train. It might be better to simply stay out of their way.

Once my husband begins the downward descent, there’s a much better chance he’ll take me down with him than I’ll be able to keep him upright. I have learned that it is better to stand by and watch as he goes down because at least one of us is still able to call for help if needed. It may sound cold, but it doesn’t do any good for me to intervene and get hurt myself. Once he’s down, I still need to refrain from jumping in as we see if he can get himself up off the floor. When I start grabbing arms and pulling on him I may cause more injuries than he had from the fall itself. If he is down and can’t get himself up, I need to call 911 for assistance.

Twice when he has fallen, he was in the bathroom and there was no way I could have stopped it from happening. We looked afterwards at what may have caused the fall so we could adjust the environment to keep it from happening again. He falls in slow motion, perhaps that’s the muscle stiffness he experiences thanks to his Parkinson’s diagnosis. After both of the these falls, I was able to help him maneuver into a position where he could pull himself up. So far he’s only had bumps and bruises, no serious injuries.

It’s instinctual to try to help when I see him falling. I have had to reteach my responses, slow them down so I act appropriately rather than react in haste. I also have had to share this with any guests in our home who might be there when he takes a fall. We certainly don’t want anyone getting hurt while trying to be helpful. Thank goodness there are a lot of adaptive tools that help him stay upright from strategically placed grab bars to transfer poles, even his cane and walker. We haven’t had to deal with a fall for several months now, I hope we can keep that stretch going.

Be kind to your loved one with Parkinson’s, be even kinder to yourself because this is a shared diagnosis and it will impact your life too.

I woke up this morning and greeted my husband with a cheery “Welcome to Tuesday!” I went through a countdown of the month to determine it was Tuesday the fifth of August. Only once I had finished did my husband speak, “It’s actually Thursday”. We both had a good laugh and I then redid the morning recap and corrected it to Thursday the seventh. What a way to start my day!

That’s really just one way that his diagnosis of Parkinson’s has impacted both of us. I do the morning countdown to remind us because our days are no longer known by their names, it’s what we’re doing relative to his disease. Tuesday and Thursday are Boomerang days because that’s when and where he goes for movement classes. Monday and Wednesday are caregiver days and go by the names of whoever is coming to stay with him. Friday is either known as a support group day or named after his coach on zoom. Our lives seem to revolve around the interventions we have put in place to help us manage this disease.

As his symptoms progress, more adaptations to our lives come into play. It’s important to be mindful of the foods we eat and how they are prepared to make sure he can manage them. We modify our home, age-proofing it if you will. We don’t go out as much anymore and only to familiar locations that are easy to access. Old friends drop away when we can’t participate in the same activities anymore. Much of our time is spent doing what we must to get through the day and little on those things we actually want to do so hobbies for both of us tend to go by the wayside.

Getting back to my original premise, it is essential that I be kind not only to my husband but also to myself. I am living as a CarePartner without a roadmap on this journey uniquely based on his diagnosis and progression. Parkinson’s is changing my life in ways I never really expected so I accept, adapt, modify, endure and give myself a break when I feel angry or frustrated about what we are facing. I can only do so much and there will be moments when I feel it isn’t enough. That’s when I remember to be kind and forgiving to myself while making the best of the situation we have both been put in thanks to this disease.