Author: cptricia

Sometimes you need to get out of the way and watch what happens as your Person with Parkinson’s shows you what they can do.

As my husband’s symptoms progress, I realize that I’ve developed an interesting technique for when we’re around other people. I have become a sort of shield or buffer for my husband. I hover and try to make sure he has what he needs, whether he really needs me there or not. I often speak for him or complete his sentences rather than allowing him the respect and the time to participate fully. This really came home yesterday when we got together with family at my sister’s house.

It was a beautiful afternoon and my sister had everything set up outside. I was bringing things in from the car and my husband went on in ahead of me. He found a great seat and was talking with my sister when I joined them. I sat between them and joined in their conversation, not intentionally but in reality taking over for my husband. Later, when we moved to the dinner table again I placed myself between my husband and the rest of the group so I could be there if he needed me.

It was after dinner when I got up to clear our plates, that I got to see the problem I was creating by hovering. With me out of the way, my husband was able to hear what others were saying and started to participate in the ongoing chat. I watched as he shared a story with my brother-in-law and was fully engaged in conversation. They were laughing together and recollecting past adventures. It was so good to see and definitely an eye opener for me.

In the future I am going to try harder not to be a barrier to my husband by stepping back and giving him a chance to engage. I am going to try to be more aware of when I am hovering and let him be. I am going to stop thinking I need to buffer for him and instead let him remind all of us of the amazing and capable person he still is, regardless of his diagnosis of PD.

Exercise your body, exercise your mind and exercise your soul every day to keep your entire self flexible and prepared for whatever life brings.

I put my body first because a healthy and relatively pain-free body is essential when living with someone who has a chronic illness. I know how important working out is for my husband, I don’t always remember that it is just as important for me. Exercising, getting the blood flowing throughout my body, is also key to keeping my brain healthy so it can manage everything else. Having a healthy body and brain gives me the energy, and capacity, to provide the support he needs while continuing to pursue my personal interests and self-care.

In addition to physical activity every day, I like to find ways to stretch my mind. I read the local newspaper daily and try to stay informed about current events. I find time for computer games on my tablet, solitaire and sudoku or matching games that give different challenges. I follow several Parkinson’s research websites looking for answers to challenges we face. The older I get, the more often I find myself standing in a room wondering why I am there. Any activities that might help me maintain the brain I have left has to be good, right?

Finally, I take time every day to exercise (or really pamper) my soul. I can only spend so much of my time in the CarePartner role before I find myself getting frustrated and tired. My way of fighting that is to find a space in my day to reconnect to myself. My husband takes naps daily which gives me a chance to focus on my own needs. This is my time to write or play games. My favorite activity is writing because it gives me the opportunity to vent negative feelings in a safe way rather than put them out into the world around us. I journal what’s happening in my day, but once that is done I work on creative short stories and poems. The creative writing allows me to escape into a different reality for a while. That hour or so gives me a break midday to rest, reflect and refresh my soul. He needs the sleep and I need the quiet. It really works well for both of us.

Just because you can do something doesn’t mean you should. Accept that we all have limitations and find other options when a task isn’t safe or smart for you to do.

This topic comes up every spring. As the weather starts getting better, I am thinking about outside chores and spring cleaning. I look at my roof and know it needs to be swept off. I look at my trees and shrubs and consider which might need trimming. I look at my garden spot and imagine which vegetables I should plant. I look at the windows that need washing and the patio that needs power scrubbing. It doesn’t take long for my ambition to overwhelm my motivation and the reality that, no matter how much I want to do all of these chores, I probably shouldn’t.

So, my  plan is to make a list of what needs to be done and when. Then I can look at what I can manage that might actually fit into my schedule. Taking a second look would give me the opportunity to ask myself if I am the best person to be doing all of these things? Would that be the wisest option based on my current situation? Most importantly, can I do these chores safely? This would allow me to step back and consider which ones might be better handled in other hands or, at the very least, with help. My list becomes two lists, one for me to do and one for me to farm out.

As my husband’s symptoms progress, I find myself taking on more chores that he once handled. I am also still carrying everything I did before. It is not realistic for me to expect that I can do the work of two people around the house while also providing good care for him. I have to accept that there are limits to my capacity and ask for help. I may find the need to add a third list, those things that really don’t matter and find a way to let them go. Then I’ll be ready to face spring with a renewed concept of where to start and how I will manage it, always knowing that there is room on the other lists if things change or I have taken on too much. Safety, time and personal happiness will drive my decisions as I tackle what I have mindfully chosen to do, and look for others to take care of the rest.

Help your loved one remember that it is the disease they have, not who they are that is creating the challenges you both face.

I was participating in a CarePartner meeting the other day when the question came up, should I tell my husband that he has Lewy Body Syndrome or not? This brought up so many questions for me, not the least of which was how the CarePartner could know about this diagnosis without their husband knowing? Then I remembered my Dad. In the later stages of his illness, the doctor could have told him anything and he wouldn’t have been able to understand or recall it after the appointment, one more reason why CarePartners must accompany their loved ones to appointments. Is that where this question came from? If so, it wouldn’t matter what they told their husband, it probably wouldn’t be retained.

Lewy Body Syndrome is associated with Parkinson’s psychosis and impacts up to 50% of our loved ones. It usually starts with mild hallucinations and/or delusions and can be accompanied by memory lapses. In the beginning, the Person with Parkinson’s recognizes that it isn’t real. We would let Dad know he was the only one seeing whatever it was and he could let it go. As things progressed however, the delusions often became his reality. He didn’t recognize us or understand where we were. He became trapped in his thoughts and was even violent at times. It would not have done us any good to try to tell him he had a disease at that point, it would have just made him angrier.

My husband is not showing any signs of Lewy Body Syndrome, but we still make sure to blame Parkinson’s itself for any symptoms he does have. It is the disease, not the person that creates the  difficulties we face. It is essential that we both remember this and know that he is always doing his best to overcome anything PD throws his way. Yes, he needs to know that he has a disease as long as we can both accept and understand what that means and the knowledge doesn’t make things worse for the situation.

Take a day off from Parkinson’s and see how relaxing it can be.

I don’t think we are at a place where I can take a full day, but am learning the pleasure of taking just a few hours off. Now that we have in-home care, I can go out to take care of tasks or meet with friends knowing my husband is safe. It’s such a great way to relieve the stresses that are associated with daily vigilance as it gives me a chance to breathe. My only challenge is figuring out what to do with that time!

One part of our plan for care was to hire someone who could accompany him to the gym for his weekly workout on the recumbent bike. I like having an hour alone in my house to do chores or just relax. This is working really well. We have this set as a part of our Monday afternoon routine and it is amazing how much I can get done in that one hour. Then I have them coming on Wednesday morning, my yoga day. It gives me a few more hours during my week when I can focus on self-care without having an ear on my phone, it’s wonderful!

I can’t thank my husband enough for insisting that we get long term care insurance all those years ago. I think he must have been psychic because neither of us had health concerns at the time. I do know that it is making such a difference for us now. If we didn’t have the insurance, I don’t know that we could afford in-home care and I know that our family and friends would not be able to provide the additional support we need. Maybe it’s time we all got together and pushed our legislators to get basic in-home care included in Medicare coverage. That’s a conversation for another day, today I’ll just be thankful for our caregiver and enjoy my free time while I can.

Find a support network that allows you to share openly about the challenges you face, but always remember that what works in their situation may not work for you.

I was recently reminded that no matter how much we may have in common as CarePartners, there will always be differences based on what our loved one’s are experiencing. My husband’s capabilities will always flavor what our lives look like and what we are able to do as a couple. I have been considering scheduling a spring mini-vacation, a few days at the beach. It’s something we have done often in the past and yet this year we may not go. I am at the point of deciding that it may be more work and stress on both of us than it is worth.

I threw this out as a question at a recent support group event and the responses were interesting. One of my friends said that she always books an ADA room but also packs a bed rail and other equipment they might need. Another CarePartner at the table said that they bring extra clothes and toileting supplies. We talked about the challenges of setting up the room to meet the needs of our loved ones and the unexpected challenges that can arise. Things like on-site restaurants that aren’t open for breakfast.

Perhaps it was fate that I stumbled across an article in an issue of our AARP magazine that talked about this very topic. It was written by a gentleman in his early 70’s who had come to the conclusion that maybe, instead of creating a “bucket list” of things to do before we die, it might be better to create an “anti-bucket list” of things we never wanted to do again. His words resonated with me. Why would I drive for 3 hours to stay in a room where we have none of our adaptive tools? Especially since we would spend most of the time looking out at the window at the beach, is it really worth the hassle? I don’t think so, not for us at this point in our journey anyway. And that is okay with me.

The article I mention was published in the December/January issue of AARP, the Magazine. It was written by Stephen Randall and entitled “The Serenity of Saying ‘Never Again’”.

Own the good things that are happening because there will always be difficulties but the successes, no matter how small, are what give you the strength to keep moving.

It seems like my life is full of bad news lately, much of it related to my friends with Parkinson’s. I am happy that we can all share in our challenges and understand the value of having someone to talk with during difficult times, however, it can be really depressing. I have decided that it’s time to start looking for good news and sharing our victories alongside our struggles. Let’s talk about tropical vacations or coming home from the hospital feeling great. I want to hear about new grandbabies or share pictures of spring flowers in my yard. I need something to offset the losses we are all facing, no matter how trivial it may seem.

I recall learning somewhere that it takes five positive comments to counteract the effects of one negative comment. I wonder how that principle applies to positive and negative messages or activities? What I do know is that it is much easier to face my day when I focus on the good around me than when I let the bad creep in and take over. And let’s face it, caring my husband with PD is going to bring some bad stuff to my days. Even if my positive activities are minimal, something like making our favorite meal or playing with the cat, experiencing them fully can help change the tone of my day.

So here goes, my daffodils are starting to bloom, the sun was shining yesterday and I got to go for a walk in our neighborhood. We’ve been waiting on a new speech program for my husband and he finally gets to start tomorrow. We’re having dinner with friends tonight, something we don’t get to do often enough. Someone I worked with a decade ago reached out last weekend to say that she was thinking of me. That’s six positive thoughts. Maybe focusing on these things won’t make the bad go away, but it can’t hurt which may be all I can ask for in this journey as a PD CarePartner. I will tolerate the bad, engage in the good, and keep moving forward as I strive to live my life fully.

Having advanced Parkinson’s Disease can complicate having an intimate relationship with your loved one. It doesn’t mean you can’t still try.

My husband and I were in our middle years when we met and married. Our relationship is built on three strong legs much like a milk stool. The first leg is intellectual, we can have intelligent conversations. The second is emotional, we understand and support each other on a deep level to face issues together. The third leg is a physical connection, we enjoy giving and receiving physical pleasure with each other. Parkinson’s has tried to cut those legs out from under us, particularly the third.

I know that some of our difficulties come from being older. We are both less limber than we used to be and certain moves are painful if not impossible. We can avoid those things that hurt and still hold each other close. We can still touch each other and share in the pleasures of cuddling, kissing and hugging. If something more develops, we are still able to find pathways to satisfaction even though it may look different than it once did.

It’s a Sunday afternoon, grey outside and no real plans. It may be a good day to play, we’ve talked about that for this afternoon. I like that we still have a somewhat active sex life, I do wish it could be more spontaneous. I have dreams that take me back to better times, but wake to our current reality and it’s okay. I have found that it is better to be thankful for what we have and grateful for what we once had, rather than sad about what we’ve lost thanks to PD. We’ll keep working on that third leg, whatever it needs to look like, because without it we’d fall over and neither of us want that to happen.

Before accepting a new task, consider what you will have to give up doing so that you have both the energy and the capacity in your already busy life.

There are times when caring for my home and my husband becomes overwhelming. These are the times to remember that maybe I’m trying to do too much. When we first met, I was working for my husband and he taught me a very important concept. When he would assign a new task, he always checked in to make sure I had the time to take it on. We often had conversations about what tasks might have to go away in order for me to take on the new challenge. Unfortunately our current situation with Parkinson’s Disease doesn’t always allow that same flexibility.

When faced with a new or different task, the easiest solution usually involves letting go of something I do for myself. That frees up extra time and allows me to take on the new job whether for my husband or our house. Sometimes it’s really basic, if I’m doing this task today, what will I need to put off until tomorrow? Other times it’s looking at what I can stop doing altogether to free up the extra time I need. Choosing to delay or ignore self-care is not a great alternative though because those activities are what help control my stress levels and keep me calm. When I give them up or put them off, I am not giving either of us the best of care.

How do I decide which tasks to stop doing when those new challenges arise? How do I balance my care with his care and come out with a good plan? I am not sure that there is a good answer for this dilemma. I think that I am going to have to face each change as it comes and make the best decision based on where we are at the time. It may be that I have tasks I can let go, it may be that I can delay certain things, it may be that I find someone else to take some things on for me. And perhaps it is time to revisit those conversations we used to have so we can find direction and clarity as we face these new challenges together.

Don’t ask questions unless you are prepared to hear and accept the answers.

Okay, so we’ve all heard the thing about how there are no “dumb” questions, but today I am thinking that maybe there are. Those would be the questions that come up on my husband’s journey with Parkinson’s that I am just not ready to face. What happens next? Where will we be in 5 years? How much longer do we have together?

Advances in research, particularly genetic in nature, are promising. They can currently test for Parkinson’s and are working on identifying the unique strains that define each person’s journey. The hope is that one day they will not only diagnose the disease, but also be able to give you a picture of where your particular journey might lead. Neurologists would be able to differentiate whether you are going to face more physical or cognitive challenges based on changes in your genetic makeup. They may be able to hand each person with PD a roadmap, if you will, a tool to help them navigate the progression of their symptoms.

Which brings me back to my original premise…would I want to know where we are headed? If our medical team can tell us what is coming for my husband but don’t have any new treatments or interventions, what good will it do? I hate the current uncertainty, yet recognize that it also brings a sense of hope. His symptoms and our struggles could get much worse or they could just get a little bit worse or, just maybe, they could improve. I think that not knowing everything about our future is working for me. I won’t be asking the “where will we be” or “when will it happen” questions, I think the answers would be too much for me.