love

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.

It’s okay to get angry and to express your anger as long as it is positive and directed at the right target.

By target I actually mean the real reason you are angry or the problem that is causing the anger. I’ve said this before, it is okay to be angry at Parkinson’s for the challenges we face, it’s not okay to be angry at my husband for things he can’t do anything about. However there are things that happen within that dynamic that make me angry, things he does have control over. I need to be able to express those feelings or they will eat away at me.

My husband will not accept assistance with certain daily tasks unless it comes from me. I get it, he’s embarrassed or uncomfortable when asking for help. But…and this is a big one…that help is often exactly what I need. Our caregiver is trained and ready to help wherever it is needed. When all she gets to do for him is stand by, it becomes less a caregiver role and more of a babysitter role. As soon as she leaves at the end of her shift suddenly he needs the toilet or he needs a snack or he needs something else. I get angry at him when he won’t accept help that is here and waiting for him.

A quick example, it was less than 10 minutes after our caregiver left the other day when my husband called for help in the bathroom. I was in the kitchen starting dinner prep. The disease may be why he needs the help but he does have some control over the timing. I have to admit that I shouted a bit, I was angry and really needed to let it out. Plus I needed for him to understand that this was a big issue for me. I think I accomplished both of those things, we’ll see if it makes any difference.

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.

Don’t downplay the challenges you are facing as a CarePartner. Your journey is just as difficult as that of your loved one.

When I started writing this blog almost six years ago, I wanted to share what I was facing as a PD CarePartner and perhaps be able to figure some of it out. What I am saying is that if you are reading this hoping to find answers for your loved one, you can stop now. However, if you are looking for what you might face on your journey loving someone with Parkinson’s Disease, read on and I hope you find my words helpful. Because the diagnosis your partner received will impact the relationship you share and will change your life forever.

My husband has a group of medical professionals who are all focused on keeping him healthy. I think that is great but wish that, just once, one of them would turn to me and say “how are you doing?” They ask for my perspective on him but never check in on me. They watch for anxiety and depression in my husband but no one is looking to see whether I am okay. Let’s face it, having the person I love taken away a little more every day is a classic situation for me to be anxious and/or depressed. It’s like his doctors see me as a therapeutic tool or aide, not a person with feelings of my own.

Yes, my husband is the one having to fight the symptoms on a constant basis yet I am the one who has to stand by and watch. I have to be ready to step in whenever I am needed. I am in a constant state of alert just in case something happens. Add to that the additional chores around the house that I find myself responsible for now. My life has been upended as much as his. So, I don’t feel guilty for resenting the changes this disease has brought to our lives and I don’t dismiss my pain and loss.  My story, all of our stories as Caring Partners matter too.

Happiness is not a choice, it is the result of other choices you make. Responding positively to all challenges is the choice and it will bring you happiness.

Today I am revisiting words that I wrote a few years ago but that are even more true today than they were then. Only one or two things needed to be changed to address the advancing symptoms of my husband’s illness. It’s amazing how much has changed and yet the basics seem to always stay the same. I continue striving to provide good care for him, try to be mindful of my own needs, and find some happy moments along the way. I hope that these words give you some peace and a path to happy moments today.

I wish being happy were as simple as deciding that it was going to be so. I would wake in the morning with a smile on my face and it would stay there all day. Instead, life comes with different challenges that make me continuously revisit my desire for happiness as I find my way through. There are days when all I want to do is pull the blankets back over my head and hibernate, however I know that isn’t going to change anything. If I can get myself up prepared to face whatever comes with positive energy, perhaps I can find a way to move through this day and share happy moments with my husband. There will be successes, some things will be tougher and there may even be failures, but if I remember that the challenges are temporary and there are still opportunities for better times ahead, we will make it.

So, rather than choose to be happy, I will choose to be positive in all that I do and I sincerely believe that happiness will be the outcome.