life

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. 

The road ahead with Parkinson’s is uncertain and challenging. Having conversations about possible upcoming decisions can smooth the pathway later when they become real.

Looking back on our early years, I was not sure what to expect after we received this diagnosis. My father was diagnosed with Parkinson’s way back when so I thought I had a clue. I was so wrong. Our journey, my husband’s presentation of the disease, has been completely different from what my father faced. What I did know, however, was how ugly it could be and we talked some about that. I had watched my parent’s struggle and wanted better for us. Thankfully, our relationship was already based on regular communication and weekly check-ins so discussing his PD was folded into those conversations.

We discussed how his tremor and stiffness might impact his driving before it became an issue, always focusing on the physical ramifications of this illness. When it came time, it was an easier decision for him to stop driving because we had talked about safety concerns and alternatives. When he needed to stop climbing ladders, cooking, using electric tools, he was open to these limitations because we had already discussed them. Safety and the restrictions of his Parkinson’s Disease were always the reasons, never personal deficiencies. He was not to blame for the challenges we were facing.

Our latest conversations are around how to make sure he is receiving the care he needs. What will happen if we reach the stage where I am not able to care for him or, heaven forbid, if being at home is not the safest option? Parkinson’s Disease brings difficult decisions for both of us. Talking about them before actually having to make them puts us on the same page. It also lets me know what he wants moving forward as well as gives me permission to make those decisions alone should that time come.

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.