family

Give yourself permission to have a bad day but not to take it out on your partner. Talk with them when you’re feeling low so they know it’s not about them.

Some days are going to be tougher than others, it’s just the way things are and would be that way even if I wasn’t a Parkinson’s CarePartner. However, being on this journey does complicate my life when I’m having those low days because I still need to be present and do the best I can for my husband. And there’s the key, understanding that my best may not always look the same. On a day when I am tired or struggling to keep up, I need to remember I am still doing my best in that moment and accept that it’s okay if I don’t get as much done.

It is especially helpful for me to tell my husband how I’m feeling rather than simply be quiet or cranky because I’m not at 100 percent. I may say something like, today we’re going out for dinner because I just don’t have the energy to cook. Or maybe I tell him that I need some time alone, I’ll be in the back for a while please don’t call unless you really need me. I have a friend who simply tells her husband she needs a day off and then takes it.

My husband never asked for this diagnosis and he never expected he would have to depend on me for so much support. When I’m having a tough day it is vital that I remember this. He often recognizes better than I do when I need to rest. He will be okay if I’m not the one who does everything that needs to be done every day. Or if somedays, things simply don’t happen. He just needs to know what’s going on with me so he doesn’t think it’s all his fault.

We all need to find purpose in our lives and the only purpose CarePartners have can’t be “to provide care for my loved one.”

Wow, this is such an easy trap to fall into. I wake up in the morning and my husband is there needing my help to get out of bed. I spend much of my day working with him on his activities of daily living and trying to make sure his day goes well. By the time I help him back into bed at night, I am often exhausted. I used to hear all the words about “self-care”, but I didn’t really understand the importance or how to make it happen in our busy days. His care had become my only purpose.

I’m not sure what it was that finally triggered me but I realized that immersing myself in his disease wasn’t healthy for either of us. Our world was shrinking when everything we did had something to do with Parkinson’s. We had little or no contact outside of the PD world. It was when I started trying to write about things other than our journey that I realized I could have my own interests without taking away from caring for him. As a matter of fact, those other activities that I take part in bring new conversations and have opened up windows in our current situation.

Having in-home care helps me manage my outside stuff but it isn’t absolutely necessary. I can write while he is napping and have connected with some great writer’s groups through the internet. I wouldn’t say that my purpose in life has become to write the great American novel, but it has become to find additional personal enrichment alongside our PD journey. I’ve even joined a social group that has nothing to do with writing or PD and our world hasn’t fallen apart. Caring for my husband is still a big piece of my purpose but caring for me has found its way in too.

Try to be understanding when your loved one wants to do things they really shouldn’t, especially if they are watching you struggle to do those same tasks.                                                                                        

We recently had a small painting project that I wasn’t comfortable completing so I reached out to our neighbors to see if they would be able to help. The couple were happy to do the work for me and did a much better job than I would have managed on my own. I was very grateful to them but, It also helped me realize how my husband must feel watching me do things he used to do. It must be just as difficult for him to see me muddling through his former tasks as it was for me to watch the neighbors that day. Even after handing the task off to them, I wanted to be out there helping.

One conversation my husband and I have often is about bushes we planted in our backyard. He can no longer handle trimmers safely so caring for them has become my job. He always kept the bed tidy whereas I trim once or maybe twice a year depending on the bush and how fast it grows. He has decided that maybe I shouldn’t be climbing up into the flower bed to trim them back at all, I might fall. He wants me to let our garden guy do the work for us (perhaps thinking he’ll do it more often?), whereas, I enjoy getting out there and whacking on things. It’s a great stress reliever and gives a real feeling of accomplishment once I’m done. But is it really about me doing it at all or the fact that he can’t anymore?

I know gardening wasn’t his favorite activity, but it was his to do and he did it well. Does he feel a loss when he has to sit and watch me doing what were once his tasks? Does it trouble him knowing he can’t get out there and help me? Perhaps I need to approach these conversations with compassion rather than look at them as a power struggle. It may not be as much about who is doing the work as it is about who is still able to do the work. Yard work, whether he enjoyed it or not, may just be one more thing that Parkinson’s has taken from him. 

Sometimes it’s okay to take a chance to see what works for you and your loved one. You may be surprised by the results.

I had convinced myself that my husband couldn’t be safe on his own. If I had to leave him at home alone, I worried every moment I was away that something was going to happen and I’d come back to find him on the floor or paramedics at our door. At the same time, I was feeling frustrated by being tied to the house when I have things that I need or want to do because I was so certain he needed this constant supervision.

It came to a head recently when he told me straight up that he can be okay on his own. In his opinion, I was underestimating his ability to care for himself. We talked about what it might look like for me to go out for an hour or two and gave it a try this past week. I scheduled a couple of outings for myself at times when he would normally be resting and both went really well. Now I feel like a fool because I have been so protective and so careful that I let his diagnosis completely take over my life too.

This doesn’t mean that I am going to be leaving him for extended periods or that we are going to cancel our in-home care. It does means that with mindful scheduling and the understanding it might need to change, I can get out and do some of the things I have been putting off. I can have a life of my own without taking away from caring for my husband and our home. As a matter of fact, it may be good for both of us to have a break from my constant presence (and nagging) to refresh our relationship. On days when he feels he can be safe and is able to manage, I think getting away may be a good addition to my CarePartner routine.

Please note- my situation is not yours and I would never suggest you try what works for me because it may not be safe for you and your loved one. Always make choices based on what is best and safest in your home.

Sometimes the challenges I face are all about my husband’s diagnosis of Parkinson’s but most of the time they are based in my role as his primary caregiver.

It’s interesting to me that ever since my husband was diagnosed with PD, we are on the same journey yet we are not. We share much due to his disease but our responses to the changes it has brought to our lives are obviously different. He faces the actual loss of physical and mental capacity, I face the loss of my partner in life. He struggles daily with survival, I struggle to pick up the pieces left behind. His battles are direct while mine are more behind the scenes, yet all are just as important in managing our daily routines.

It is important that I recognize these basic differences in our needs. Support in his journey will come from the traditional Parkinson’s organizations but for me it can also come from caregiving networks. I have much in common with other Caring Partners struggling to make it through their days whatever their loved one’s diagnosis might be. While the actual work we do may be different, the emotional toll of caring for a loved one with a chronic or terminal illness is going to be universal. We all face frustration, exhaustion, grief, and loss and can be a valuable resource for each other.

While I am active in PD support groups, I also seek other options. It is vital that I remember PD supports are there because of my husband and his diagnosis, Caregiver supports are there just for me. There are a couple of on-line resources that I use regularly. The help available on these websites is more relevant for what I need, rather than a response to what is happening with him. It is much appreciated advice for me because of what I am facing and not as an extension of his diagnosis.

On-line resources I find helpful as a CarePartner include Family Caregiver Alliance; Caregiver Action Network; even AARP.

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.