family

We don’t have to be miserable to keep our loved ones happy. If you are, perhaps it’s time to try a different approach.

Forgive me if this sounds judgmental, it certainly isn’t meant to be. I get how difficult life can be when caring for a loved one with Parkinson’s Disease and speak from a voice of experience. I have been in that place where I was exhausted, frustrated and, honestly, pretty miserable. It’s not a good place to be and no one should have to live there. It was the realization that my husband loves me and would never want to cause me so much distress that finally gave me the courage to step up and talk to him about what I was feeling.

Probably the most difficult conversation was when I was actually able to say to him, “You may not think we need help, but I do.” I was wearing myself out trying to keep up with everything around the house and care for my husband too. There were never enough hours in the day and the things that got dropped were always those that mattered to me. I was simply going through the motions rather than living life fully. It wasn’t good for either of us. It was time to take a new approach, whatever that looked like, and my husband agreed.

Thankfully we had the resources to hire outside help. It started with yard work and soon I added some in-home help too. We now have a gentleman who helps with our lawn care, a caregiver who comes twice a week and a cleaning service who comes in twice a month. It’s not how I thought we would be spending our retirement funds, but it certainly makes things easier and gives me the opportunity to have a life too. Caring for my husband is still difficult at times, but it is not unbearable. And we are both able to find pleasure in each other’s company again, something I was afraid Parkinson’s had taken away forever.

Constant stress is a component of the journey. Be mindful of the tools you use for relief.

I have mentioned this statistic before, more than 60% of spouses caring for their partner with a chronic illness die earlier than their non-caregiving peers. The constant stress we face is a huge contributor to our higher mortality rate. I am on duty with my husband 24 hours a day and, other than the hours when we are both sleeping, I am checking to make sure he is okay. I even sometimes wake in the middle of the night and listen for his breathing. This continual state of alert takes a toll on my health.

My stress reduction plan includes exercise, deep breathing, taking breaks to read a good book and journaling. Weekly yoga classes provide an opportunity for meditation, neighborhood walks are great for clearing my head. Reading alongside my husband allows for a mental escape and gives us something to talk about. In those moments when I feel like I’m about to explode, nothing calms me faster than to step back and take a couple of deep breaths.

I often joke with fellow CarePartners about the value of a good glass of wine on a long and difficult day. Or even on a normal day, come to think of it. Those single glasses of wine are acceptable as long as they are only one piece of my stress relief program. Chocolate and other sweets are also options for dealing with the daily pressures. Again, not a problem when eaten in moderation. I just need to remember that sticking with my healthier choices like exercise and journaling keeps me present in the moment, which is always better for my husband and for me.

For more on the stress we all face as CarePartners, visit “Caregiver Health” on the Family Caregiver Alliance website. To learn more alleviating some of that, visit “Caregiver Self-Care: Caring for You” on that same website.

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.

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.  

The help you want from caregivers as a CarePartner and the help your loved one is willing to accept may be different. Be open to their concerns and negotiate mindfully.

If I could ask for help with my husband based on when I need it most, it would be those first couple of hours every day. I would have someone come in to make his breakfast, help him shower and get dressed. They would help with his shoes and socks and be available if he needed additional support getting ready for his day. And while they were working with my husband, I would be having breakfast, reading the newspaper, writing in my journal, catching up with emails, taking a shower and getting myself ready for the day.

Unfortunately, that doesn’t work for us. My husband doesn’t want anyone else helping him with his more personal tasks and I can understand that. There are things that the state won’t allow his caregivers to do, like shaving him with a razor or clipping his nails, so I get to do all of those. The closest I get to taking a break with the morning schedule is on days when we do have a caregiver coming and he agrees to switch his shower for an upper body sponge bath when they arrive. It’s a compromise that we worked out so I get a bit of a break and he gets to maintain some of his privacy.

We both need to understand and agree on the role caregivers can and should be playing in our home. It is not easy for either of us to have a stranger coming in to care for him. It’s important that we are able to communicate about these things and that we are able to negotiate when we have a difference. I try to respect his need for independence and ask that he respect my personal limitations. There are always going to be times when I need more or he wants less, we just need to be open to working together and making this difficult component of our journey better for everyone.

Attend medical appointments with your loved one and share your perspective so the doctor can get the whole picture.

This afternoon my husband gets to see his neurologist/movement disorder specialist. We visit in-person once a year and do a virtual visit once a year. In the beginning I went along because I wanted to learn as much as possible about his diagnosis. I quickly figured out that it is valuable for me to be there because my husband may minimize his challenges. In fact, I attend all my husband’s medical appointments including his vision and PT. I know his dental team and, while I don’t go in the room with him for those appointments, I do keep in touch with them. His entire medical team needs an honest assessment of his progress on this journey. If they don’t know about everything that is going on, they can’t recommend the best treatment plans for whatever their specialty is.

Preparing for these visits varies based on who he is seeing. Most of the time we will have a conversation about what we want to emphasize on our way to whichever doctor’s office. I jot significant things like falls on my calendar and we pull that out to review things that happened since we last saw them. When meeting with his neurologist, we often make lists so we don’t miss anything. I write a list and compare it to his so there are no surprises or difficult conversations in the doctor’s office.

The important thing to remember is that the doctors can only work with what they know. I schedule appointments at a time between meds when he is feeling strong and doesn’t get exhausted. They need to know that this may not be his typical presentation. There probably are times when my husband wishes I wasn’t there because of things I share, but it has to be done. And, if there is something I don’t have time or feel comfortable saying with him in the room, I reach out to his doctor before or after the appointment. The medical team appreciates having my perspective, my husband appreciates having a second set of ears in the room to hear instructions, and I appreciate being kept in the loop on his current treatment plans. It’s a winning process for everyone.