life

If being a Parkinson’s CarePartner wasn’t enough, there will be times when life throws you a curve. Don’t fret because you can’t possibly be ready for everything that happens.

Writing this blog has been therapy for me. I can write about the things that are complicating our lives and know the people reading these words will understand. It’s a great way for me to work through feelings and frustrations. Imagine my upset when the last piece I wrote got lost somewhere in the on-line blog machine that hosts my site and I couldn’t figure out what had happened. It was a major curve in what had been a pretty good day.

I am not a huge techie and suddenly I was seeing all kinds of ugly outcomes. I just knew my blog had been hi-jacked, but why anyone might want to do that didn’t really make any sense. I tried to reach the host site, but they weren’t available by phone and emails were taking too long. I jumped into a dark hole with both feet and was ready to delete the entire blog and close the site. My loving husband  finally suggested that since I had reported the issue it was time to step back and let the professionals do their work before making any rash decisions.

The next morning I finally got my answers. It seems there had been an internal glitch that was redirecting posted messages within the host site and several blogs were impacted including mine. I was assured that no one had hi-jacked my site or done anything nefarious and that they were working to correct the problem.

The lesson I gleaned from all of this was not to over-react. Life is too out of control already and when I felt I had lost one more piece, I lost it myself. Thankfully, all is back in order and the blog can continue. Getting upset didn’t do me any good and things were cleared up in a timely manner. So, my message for today is when life throws me a curve, I’m going to try to act appropriately and keep on doing those things that matter most. We’ll see if I am able to stick to that.

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.

A good night’s sleep is one of the most elusive desires in a CarePartner’s life.

I am so tired, excuse the pun, of people telling me how important it is to get a good night’s sleep. I totally know this. What I don’t know is how it can be possible while I am living with a husband who has Parkinson’s Disease. I remember the good old days when I would go to bed at 11 and not wake up until 8. It was wonderful. Now I try to be in bed around 10 and, while we still don’t get up until 8, I am lucky if I get 4 or 5 hours of uninterrupted sleep during that time.

He would tell you that it is not all his fault, and he would be right. I have a bladder that wakes me at least once every night and we both have medications to take that get us out of bed briefly at 6. Menopause, in all its glory, has left me with night sweats that randomly interfere with my sleep. However, when he needs to get up at night, whether to use the bathroom, get into a new position, or adjust his side of the bed, I get to help and then I am wide awake. Regardless of which one of us wakes me, I am losing that deep restful sleep we all need.

I have spoken about this to medical doctors, therapists, an acupuncturist, a massage therapist and a chiropractor. They were all very “helpful” and had lots of the same suggestions about creating a healthy sleep environment, yet none of it worked. My only solution has become to let the bad night happen and then take naps during the day whenever I can. My chores for that day may not get done but so what. I make it through and, hopefully, the next night goes better and gives me a chance to catch up.

Physical support for your body is just as important as emotional support for your soul.

“Listen to your body whispering before it starts to yell.” I was participating in a Parkinson’s Foundation Mindfulness session the other day and the presenter shared this with us. She was introducing the session for the day and shared that taking time to check in and listen to our bodies can sometimes help us avoid mental burnout. It was an interesting “aha” moment for me as I realized that she was right. If I don’t listen to my body and make sure its properly supported, how can I possibly expect to find the emotional support I need on this journey?

Getting in touch with my body is not an easy thing for me to do. Ask me about my husband and I’ll tell you all about his medical complaints from a sore knee or shoulder to stiffness and swallowing issues. Ask me how I’m doing and I reply “Fine”. It was so nice when the instructor asked us to think about our feet and how they were connecting with the floor. We worked our way up considering all the parts of our bodies and how they were supported, relating to them without judgement. We were passively listening for messages about tension, tightness, stress or pain.

My emotional state is absolutely tied to how I am feeling physically. Relaxing my body releases my mind to let go, even if just for a few minutes. This is also why I enjoy yoga. When I’m focused on my physical state, my mental state can take a break. But, and this is a big one, my body needs to be properly cared for in order for me to be able to truly surrender. That’s why I must find time to listen for the whispers and act appropriately to support not only my body, but also my spirit and my soul.

You can find the Parkinson’s Foundation’s Mindfulness Monday series on their U-Tube channel by clicking here.

Finding “me time” becomes more difficult for CarePartners as their love one’s Parkinson’s progresses. It also becomes more crucial.

It’s Thursday morning at 9 am and I haven’t even started writing my blog for today. I usually have a draft by Wednesday afternoon so my husband can review it for me, he has been my second set of eyes since I started writing. My goal is to schedule it to go live at 9 am on Thursday, I am not meeting that today. I’m sure everyone reading this will understand.

So now I sit down and think what I can say today that might matter? What does my current situation look like? I could write about the patience it takes to be a CarePartner especially as we are waiting for his medical team to get things together and change his DBS battery. I could write about my frustration with what appears to be his stubbornness as I try to encourage him to do what the Speech Language Pathologist says to improve his swallowing. Honestly though, today I have too many things to do and too little time to do them, that’s my current situation. But I will struggle through and get them done because that’s what all of us living as CarePartners do. We don’t have any other choice.

When I started posting this blog, I was finding the time to write three times a week. I was also volunteering twice a week at a local museum and taking daily walks. Looking back at those words, I can see my life as a CarePartner was complicated, but it was nothing compared to where we are now. If only I had known. And that is why I always tell everyone in the early stages of this journey to do what you can while you can, you never know what your future will bring. Find your “me time” whenever possible because you won’t always have the same opportunities. And the further we go on this journey, the more difficult it becomes for both of us.

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.

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.

Being a CarePartner will be an educational journey as you learn more about the disease inflicting your loved one, develop new personal skills, and discover just how strong you truly are.

I am so tired of learning new things about Parkinson’s Disease, especially since the one thing I want to know, how to make it go away, isn’t available to me. I don’t want to learn more about fixing things around the house or taking care of my yard. I really feel like I’ve been pushed to my limits, I don’t want to have to be any stronger or more capable. I just want it all to stop and to have my husband back. That’s my whining done for the day, time to flip my perspective.

It’s time for me to figure out how to appreciate my new capabilities. There is some pride in fixing little things around the house myself and figuring ways to get bigger things done too. I find pleasure in the blueberries I am growing in our backyard. I may not enjoy all of my new skills, but they keep us going on a daily basis and there is personal satisfaction in that. Watching the man I married standing strong in spite of his diagnosis, reminds me that I must continue to be strong and capable for him.

I miss the life we had and the future we could have had. I regret conversations never shared, trips planned but never taken, all the opportunities Parkinson’s took away from us. Focusing on the losses gets me nowhere, I need to look for the gains. I feel that I have a solid knowledge base about this disease and about being a caregiver. I have become pretty competent at taking care of minor disasters around our home and property. I am more patient and compassionate than I ever thought I could be before he was diagnosed. Finally, I can be strong enough to continue this journey with him wherever it goes.

You don’t always have to be the strong one.

There are times, like today, when all I want is for someone to give me a great big hug and tell me that it’s all going to be okay. It’s weird because today hasn’t been a difficult day, no falls or major incidents, yet I just feel the need to let go and let someone else take over for a minute. I really think that having just that minute would be enough for me to release the pressure that builds up. Then I could get on with my day.   

I could turn to my husband, but then I feel guilty because he thinks my stress is all his fault. It’s not. Let me say that again, I know it’s not. I don’t blame him for this disease and the challenges it has brought, nor for the additional responsibilities I have taken on around our house. I see his struggles and the strength he needs to keep going on a daily basis. I certainly don’t want to be a drain for him. Unfortunately, unless I go knock on the neighbor’s door, there’s no one else around and I’m pretty sure they wouldn’t understand.

So, I find a quiet time when I can come to my room, take off my superwoman cape, and let go of all the expectations and duties. I take that minute I need to practice self-calming techniques. I close my eyes and breathe deeply, I massage my face and hands, especially those acupressure points between my eyebrows and between my thumb and forefinger. I wrap my arms around myself and say the words, “you’re okay today” because I know it’s true. I am strong enough to face whatever life as a CarePartner decides to throw at me, I just don’t have to be all the time.

For more information on acupressure points visit the Healthline webpage Pressure Points for Anxiety; additional information on breathing techniques can be found at Relieving Stress in the Moment by Livongo-zen.com.