Author: cptricia

Stuffing your emotions and biting your tongue will get you through the immediate moment but is not the healthiest solution for the feelings you will have as a CarePartner.

I was watching a PD CarePartner webinar the other day and they were talking about anger and guilt, two feelings I have come to know well. Of course there was the continual reminder that it’s okay to be angry at Parkinson’s Disease but not at my husband for the many things that are out of his control. And it’s that reality that takes me from my feelings of anger to feelings of guilt. So I learn to put a smile on my face and stuff all the emotions away rather than deal with them. If I just don’t react at all, then how can I do it wrong?

The thing that I forget is that my husband is angry too. He hates what is happening even more than I do and if I can acknowledge my feelings, it could give him a chance to acknowledge his. We could share in the anger at whatever is happening rather than letting it come between us. It would be a healthier way to deal with some of the frustrations we face every day and could ultimately bring us closer in our journey.

I have been at gatherings where we all joined in to shout “I hate Parkinson’s!” before the presentation started. I recall a day at Rock Steady Boxing when we wrote all the symptoms of PD on a white board and then threw rubber balls at it. Both of those were such freeing experiences. It isn’t enough for me to remember to be angry at the disease, not the man, I need to actually put that into words. If I can share those words with my husband, then even better. We can both shout to the treetops how much we hate this disease and what it has done to us. Great for stress relief and voice work; I just hope the neighbors will understand.

Use empowering and engaging words when encouraging your loved one to do their best. You might find you want to incorporate them into your life too.

I have added a word to my tool box thanks to my husband’s new Speech Pathologist through the Parkinson Voice Project and their Speak Out! Program; that word is “intent”.  Their entire program is built around helping him relearn to speak with intent. They define speaking with intent as focusing, concentrating, being purposeful and mindful, being in control and putting forth a conscious effort. When I can’t hear or understand something he says, my task is to remind him to “speak with intent” and give him another chance. He has been working with them for less than a month and we are definitely seeing a positive outcome.

Watching his success in this area made me wonder, what if he were able to expand this skill to all he does? What if he were to stand and walk with intent? What if he were to eat with intent? What if he were to do everything with intent? Parkinson’s Disease forces him to live in the moment, this concept can give him back some control of those moments.

I am so tired of asking him to speak louder, stop mumbling, walk carefully or stand up straight. Instead I am going to start reminding him to be intentional in all he does. Walk with intent, speak with intent, live with intent. It is a more empowering message that engages him fully in the activity. And it reminds both of us that he is always doing the best he can in the moment and that is all anyone can expect. Maybe it’s time for me to practice living with intent too?

Visit Parkinson Voice Project to learn about the Speak Out! program and their goal of Speaking with Intent.

Speak up for yourself in all dealings with your loved one’s medical team. They need to know when you have reached your capacity and can’t take on any more.

It happened again. Someone who isn’t living my life decided I had the time to take on more of my  husband’s care. And so, I have become his speech pathologist. It is only supposed to be for the next month, but I know that if he wants to retain what he is learning he will be asked to continue his daily practices forever. I wish they had spoken with me instead of just telling him that I could do it. Oh yeah, and some training for the part I am expected to play would have been nice. I was the one who initially contacted the program, perhaps they could have shared what they would need from me then?

I love it when the professionals working with my husband decide he needs something new and that I am the one who should provide it. There was the Physical Therapist who designed a daily workout and then told him that I wouldn’t mind helping him with it. The same PT told him that if I would massage his legs every night before bed, it would help eliminate his leg cramps. Another task that got added to my day.

It isn’t that I don’t want to help my husband nor that I begrudge him these things I am being asked to do. My problem is that the professionals don’t consider that maybe they should consult with me first to make sure I have the time and capacity to add on more. They see us as a team, which is good, but they don’t have a clue what my part in that team already entails. They don’t know that I have a full schedule of tasks in caring for my husband and our home, they only see their piece of his treatment and that “it’s only 20 minutes a day.” Perhaps the next time it happens I should turn to them and ask which of my tasks they’re willing to take over? If they can come by and cook our dinner, I’ll have plenty of time to take on more of his care. Just saying….

Don’t put off enjoying life due to the complications of your role as CarePartner or you may find that you run out of time for yourself.

The sentence above may sound somewhat selfish or harsh but that is not at all where I am going with this thought. My heart has been heavy this past week because we lost another friend from our Parkinson’s Community. It was a fellow CarePartner this time, someone who had lost her Person with PD and was finally going to have the opportunities for travel she postponed until later. Unfortunately by the time later came, it was way too short.  

I am not sure what I am advocating for here. Perhaps it is a reminder that I can’t know what the future will bring so I better get busy and make sure every day I have matters now. Maybe it’s accepting the challenges of our journey and still finding ways to fully engage in life in spite of my husband’s diagnosis. I may find that taking on some temporary additional burdens will allow us to still have fun. I’ve been putting off our annual spring getaway saying that it’s just too much work, but maybe I need to revisit that concept and recognize that the joy it brings will outweigh the difficulties?

Life is short. I can’t assume that I will have time later for fun, I need to make sure it’s happening now. And, if the opportunity includes my husband then all the better but even if it doesn’t, I can’t put it off. I don’t want to wait for later because I realize now that later may never come.

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’”.