love

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.