Author: cptricia

Attending medical appointments with your loved one may lead to unexpected benefits for you.

I know that I have written about the importance of accompanying your Person with Parkinson’s to all of their appointments so you can be ready to support them in their journey, but I don’t think I have mentioned that it can actually lead to a better life for you. This happened recently for us when  I stumbled across a new treatment for things that had been troubling me for ages. Bowel issues are a constant in Parkinson’s and constipation is something I struggle with too, thanks to a faulty thyroid gland. I also learned recently that I inherited high cholesterol from my mother. At a recent visit with a member of my husband’s medical team, he was told to try Psyllium Fiber for his digestion. In my search for the best Psyllium options I found that not only is it good for him it is also good for what ails me. It has been proven to help with chronic constipation and lowers high cholesterol. So, we’re both using it daily with pretty good results so far.

In the past I have mentioned that my husband’s diagnosis encourages me to plan and cook healthier meals and to exercise more. We work to incorporate these into our daily life and it definitely makes a difference. A visit to get blood work done earlier this week also reminded both of us of the importance of hydration. The phlebotomist was having a difficult time drawing his blood and mentioned that it was really thick. We both ramped up our water consumption that same day.

It’s so easy to get caught up in the negative aspects of this disease but in the long run, which PD is turning out to be, we are both more health conscious than ever before. I know that I am aging better thanks to suggestions for him from his medical team. One thing I hope his doctors understand is that his care is dependent on my health. Whenever they can share something that is good for both of us it’s a real bonus. I need to remember to mention this and thank each of them for the support they give me at his next appointment. Perhaps they’ll do it more?

Look for the positive in everything you do and understand that your work as a Caring Partner matters more than you will ever know.

My tasks around the house are mostly routine and often boring. I cook, clean, shop, take care of our cat, fix things as needed, do minimal yardwork, but most of all I provide 24/7 assistance as needed for my husband. Yes, there are times when I wonder why I do it all. Then I look over at my husband and see his smile. I know exactly why as I remember what matters most.

Finding ways to be positive about housework isn’t tough because I am more comfortable in a tidy house. I know that keeping things sorted and put away is safer and means less stress for both of us. The more difficult question is how do I put a positive spin on some of the things I am asked to do for my husband? Quite simply, I tackle them with a smile and get them done so we can move on. It’s not his fault that he can’t manage certain tasks and I am truly happy that I am here and able to help. We make up funny names for unpleasant duties which seems to lighten the mood. Injecting humor in difficult challenges makes them easier for both of us to handle.

I sometimes forget that being a Parkinson’s CarePartner can be a somewhat unique opportunity. I get to see firsthand what this disease does to my soul mate and yet I still get out of bed every morning to face it with him. I get to modify plans and adapt our lives to a different reality that brings out the best and the worst in me depending on the day. I get to learn new lessons in compassion, patience, and resilience. Most importantly, I get to continue spending my life with the most amazing man I have ever known. The work can be heartbreaking as I watch his struggles, but it also brings unexpected rewards if I only know where to look.

Once you delegate a task to someone else, you need to let it go.

It’s the old phenomenon where you hire someone to clean your house and then do a quick clean anyway before they come so they won’t think you’re messy. I have in-home care coming twice a week who have tasks designed to lighten my load and yet I still catch myself working to get ready for them. Or when they are here doing stuff I tell them not to worry about it, I’ll catch it later. It’s almost harder to let them do the work for me than it is to do the work myself! The other day my Wednesday lady looked at me and said, “Oh no, I don’t mind it. You just need to go on and enjoy your morning.” So I did.

Then there’s the yard work. I have a wonderful gentleman who comes weekly during the growing months to trim and clean up my yard. It’s not that I can’t do it, It’s just that he does so much better of a job and frees up so much of my time. But, I have flower and vegetable beds that I still choose to do myself. I like to be the one to trim my shrubs. My husband often asks why I don’t let them do it all for me. I’m not sure other than I need to feel I still have some control over our environment and this is where I have decided to draw the line. And when I need to move that line I know that all it takes is a quick text and my gardener is here to help.

Just as it’s hard for my husband to accept there are things he can’t do anymore, so it is for me too. I fantasize about being able to do it all, the house, the yard, and provide appropriate care for my husband and myself, but then I have to step back into reality. Accepting that I needed help was the first step, delegation the second, actually letting go and enjoying the freedom it allows is the third and final. Unfortunately for me, that may be the most difficult part.

Anger is one component of your journey as a CarePartner. Embrace and understand it, but don’t let it overtake your life.

I’ve mentioned this before, the anger I feel about the life Parkinson’s has taken away from us. Our retirement plans that have gone completely out the window.  The life I expected to live versus the life I find myself living. I’ve also talked about the necessity to direct that anger at the disease and not at my husband. This has been on my mind a lot lately and I think it may be time to revisit this topic.

Anger is a step in the grieving process but I feel like I may be stuck there. My journey is long, thankfully, and I still have my husband with me. There are those who would say this should be enough. How do I explain to them that I am grateful, but I really miss the other things we should be doing. I wake up in the middle of the night and wonder where we would be if it weren’t for his diagnosis. What would be different in our lives besides just about everything?

Unfortunately loss and anger are going to be there for the rest of this journey so I might as well get used to it. I know my husband didn’t ask for this life either and he would much rather be traveling the real world with me instead of the world of PD. That doesn’t make the loss any less painful. So, rather than let the anger overwhelm me, I acknowledge the feelings and find creative ways to express them either through my writing or physical exercise. And in the middle of the night I close my eyes and go back to sleep so I can dream of all those trips we will never get to take.

Don’t be surprised if your loved one’s medical team has unrealistic expectations of your capacity and capabilities.

My husband had a minor procedure done this week, a skin tag removed from a delicate area on his body, and it took about 10 minutes in the doctor’s office. After the doctor was done, the Medical Assistant handed me a packet of gauze, a plastic bottle and the assurances that aftercare was simple. Just rinse the area with warm water often, pack the wound and it should heal in about 2 weeks. I expressed my concerns that this is not an easy area to keep clean but she assured me that I would be able to do it as she packed the supplies in a paper bag and opened the door to send us on our way. Yes we will manage it, but what I quickly learned is that no, it is not easy.

This is not the first time this has happened. I understand that the hospital is not the best place for my husband to recover and that I, as his CarePartner, have become an alternative to a visiting nurse. Two minutes of instruction in the doctor’s office is supposed to provide me with all the training I need to provide care that even our paid caregivers aren’t qualified to do. It adds tasks to my already full days and stressors that keep me awake at night. Last night I was tossing and turning most of the night worried that I wasn’t doing things well enough and wondering what to do if he developed an infection.

This practice angers me and frustrates me because it makes me feel inadequate. I am learning to push back. I let the doctor and their staff know my concerns regarding aftercare. I ask for any supplies they can share, in the above case I got enough gauze to last the first day and a bottle that comes in really handy for rinsing the area. I would have asked for a set of gloves but already have them at home. I tell them I am worried so they won’t be surprised when I call back with more questions as his recovery proceeds. This is just another job that I get to do without training thanks to my husband’s diagnosis.

Self-motivation is sometimes difficult to find, especially when you’re trying to instill it in someone else as well.

As my husband’s CarePartner I get to wear many hats, one of which is coach and motivator. I am expected to help him stay motivated to exercise, take his medications, and continue his fight against this awful disease. I stand beside him on the good days and the not so good days and help him get through the on versus off times with his meds. It can be overwhelming as I try to provide positive support all the time. But who or what is supposed to motivate me?

I asked this question at a recent support group meeting and, of course, the first response was the one I expected most, we all do it out of love. As we went around the room, however, some other thoughts began to emerge. One person shared that they do many things simply because they need to be done and there is no one else to do them. Another person added that she and her husband kept to a schedule and it felt good for her to meet deadlines. Getting things done is gratifying but I feel we finally got to the core of the topic when someone mentioned they stay motivated by taking breaks. They swim several times a week and those breaks enable them to continue the work they need to do at home. I shared that when my husband asks for help I often stop and say “OMG, not again!!!” to myself before continuing on to do what needs to be done. Just that momentary break and release of frustration spurs me into the task at hand which is lovingly and patiently caring for someone with a chronic illness.

Self care is a difficult topic for CarePartners but it doesn’t have to be. Nothing is more motivating than taking a few minutes to simply step away from my role and relax. That might mean sitting quietly with a cup of tea and a good book or a quick stroll around the neighborhood. Neither of us asked for this disease when we committed to sharing our lives together, yet here we are. Now it’s simply time to stay motivated to find the best in each and every day no matter what that looks like.

Sometimes unexpected symptoms of Parkinson’s appear to be weather related. Be sure to discuss any physical changes, no matter how minor they seem, with your medical team before treating them yourselves.

My husband has dealt with a perpetually runny nose forever thinking it was allergies. What we learned following his Parkinson’s diagnosis was that Rhinorrea, the medical term for excess clear nasal drainage, is three times more common in people with PD than it is in the general public. Additionally, studies have been conducted on PD and seasonal allergies and the jury is still out. Regardless of whether the drainage is caused by PD or pollen, it was annoying and needed to be treated. Thankfully his neurologist agreed and was able to prescribe a nasal spray helps some.

We could have gone to the drug store and picked up something off the shelf, but most over the counter medications warn against long term usage. One drug in particular, Diphenhydramine (Benadryl) is no longer used with those of us over 65 due to the possible connection to dementia. Many allergy medications list drowsiness as a possible side effect so we felt it was essential to ask my husband’s neurologist what she could recommend as a safe, long-term treatment for this condition.

My husband was prescribed a nasal spray called Ipratropium Bromide that he uses twice a day with some success. I am not mentioning this as a recommendation, but as a potential question you could take to your medical team. Being an old fashioned guy, he also carries a handkerchief in his pocket at all times to catch those drips. Unfortunately we have had to accept that runny nose is just another component of his journey with Parkinson’s.                                                          

For more on runny noses see this fact sheet on the APDA website uncommon-non-motor-symptoms-of-pd and to read more about studies regarding seasonal allergies visit Quality of life: Seasonal fluctuation in Parkinson’s disease – PMC (nih.gov).

The word “no” is not negative when used to protect the positive boundaries and mindset you have developed while caring for yourself.

I have learned over the years that saying “no” to my husband is hard but necessary if I am going to be able to get anything done or have any time for myself. That also applies to saying “no” to myself regarding his care. We have caregivers who come to our home twice a week and yet, when they were here, I caught myself stepping in to help him with tasks that were too personal or too delicate. I had to take a breath and remind both of us that these people come here expecting to be caring for him and to give me a break. It doesn’t work unless we are all on board and let them do their jobs.

This concept also applies when it is just the two of us at home. My husband has a pretty good idea of when to leave me alone but there are times, such as this morning while writing this blog, that he decides he needs something done. It may be something that can’t wait, often it is not. Whatever I am doing gets interrupted and seldom gets finished. I know his care has to be a priority so I always respond. Once I know what he wants, I can decide whether to put him off until later.

Saying “no” can be harsh so I try to find alternative ways of putting it that soften the blow. I may ask my husband to let me finish what I am doing so I can focus on what he needs to have done. Sometimes it’s simply saying “I’ll be with you in a minute” or “let’s talk about this later, okay?”. When saying no to myself, I remember the importance of leaving my husband alone to complete certain tasks and to respect the abilities of our helpers before stepping in and doing their jobs. We all have a role to play in this journey with Parkinson’s, mine needs to be less rather than more as I figure out how to say “no” graciously and make it stick.

Taking a different approach to tasks can make them go so much better especially if you can find a way to let your creative or silly side come out to play.

I am taking a different approach to my writing today and hope you appreciate it. I have been dealing with some minor plumbing issues and have run into interesting challenges trying to get them fixed. Trying to care for my husband and my house becomes exasperating at times. When I do finally call for help, it means that I have reached the end of my rope. The following poem came out of my attempts to hire a plumber. And by the way, the sink is still dripping.

Not a Plumber

I am not a plumber that’s why I’m calling you today.

I have a faucet that’s dripping, please don’t turn me away.

You see I’m old and tired with too many things to do

And I am really hoping I can depend on you.

When you’re here I have a that toilet that gurgles every night,

I know it shouldn’t make that noise, something just isn’t right.

There’s a sink in my laundry room that needs looking at as well,

And the drain to my washing machine has an interesting smell.

I know these jobs are small and unimportant to you,

But they are driving me crazy! Is there anything you can do?

Other plumbers that I call encourage me to do them on my own.

Perhaps I could, but I don’t want to, so I’m still on the phone.

I understand you’ll have to charge me and I really do not care.

Since having you do these chores keeps me from pulling out my hair.

Because I’m really not a plumber and I don’t want to be.

Won’t you PLEASE get me on your schedule as soon as you are free?

Honesty with your loved one regarding their diagnosis and your current situation is great, sometimes diplomacy is even better.

According to my Merriam-Webster’s Collegiate Dictionary, diplomacy is defined as “skill in handling affairs without arousing hostility.” It’s the actions and thoughts behind my smile on those really tough days. I could point out all the things that are going wrong but hold my tongue knowing nothing my husband is doing is deliberate, it’s just Parkinson’s. The advantage in this approach is that it actually helps me rethink what’s happening as I work to keep myself in a positive mindset. And it acts to lessen my stress.

A good diplomat knows how to safely and positively negotiate difficult situations. As I get to take over more of the duties around our home, I have opportunities to practice my negotiating skills. My husband and I don’t approach tasks in the same way or on the same schedule. Convincing him that I have things under control even though it’s not the way he would do them is interesting. There are some tasks we can still do together, others that I know I need to do when he is napping or otherwise engaged. Then there are things I do his way to avoid conflict, agreeing simply to avoid aggravation.

Diplomacy particularly comes into play when facing transitions in our journey. I can only imagine how difficult it must be for my husband to feel he’s losing his mobility and independence, yet when it comes to safety there are things that must happen. First it was driving, more recently using a cane and then a walker. My take on using a diplomatic approach throughout these changes meant being respectful and acknowledging his feelings. I did my best to give an honest assessment of where we were and then presented options that allowed him to feel some control in the process. My husband is still able to listen to reason, something I am grateful for each and every day. I think diplomacy looks very different when dealing with PD dementia, but suspect it will be an even more useful tool should we ever reach that stage in our journey.