There are differences between caregiving and CarePartnering, yet both have a place in your journey.

I walk a tightrope everyday trying to figure out whether I am my husband’s wife and partner or his caregiver and housekeeper. The answer is that I have to find a way to be both. Somedays it will be more of one than the other, especially as his symptoms progress and his needs increase. Since we are alone in our house 95% of the time it is essential that I be able to handle both roles, so I work to find a balance that keeps everything going.

It works best when I can combine the two roles. There are certain things I do with him that fall fully into the caregiver role. However, if I stop in the middle of those tasks and drop a quick kiss on his forehead, it reminds both of us of who I am and why I’m here. Helping him out of a chair leads to an opportunity for a quick hug before moving on. Even something as simple as squeezing his hand takes me out of the caregiver role even if just for a moment. 

I don’t want to say that there is anything wrong with being his caregiver because, as things advance, I see more of my days headed there. My fear is that I could easily become just that and lose sight of the loving component of our relationship. When we have tough days it’s difficult to think about hugs and kisses, I am simply focused on getting through. I’m pretty sure that’s how my husband feels too. If I practice doing more of those extra things now, perhaps I’ll remember them on days when life is more challenging and our PD experience will be more bearable for both of us.

Practice healthy choices for yourself, not just for your loved one.

Before we started on this journey, I was exercising on my own and trying to make healthy life choices for me. Since we’ve been travelling with Parkinson’s, many of my decisions are tied in with what my husband is doing. In some cases, that has been good and I am healthier for it. As his symptoms progress, however, I need to be mindful about my personal plan to make sure it meets my needs because they are becoming increasingly different to his.

I’ve mentioned before that the demands on me physically increase as his capabilities decrease. When we were exercising together, I was able to adapt his program by using heavier weights or standing when he was seated. He is now going to a PD specific class and CarePartners are not welcome. What I finally came up with instead is membership at a local gym. I drop my husband off for his class, drive to my gym and work out for 30 minutes, then get back just in time to pick him up. We go twice a week which seems to be working well. I also go to a yoga class one day a week while his Wednesday in-home care is here. There are a couple of zoom options that we still do together when we can and that more than meets both of our needs for exercise.

It’s not just the exercise component of our lives that has changed, I need to conscientious about food choices moving forward. It appears that he is beginning to have more difficulty chewing and swallowing which may impact what he can eat. So far, I have been preparing the same foods for both of us but recognize that may need to change in the future. It will be interesting as I try to make sure we both eat healthy meals and yet in a format that works for each of us. Watch for future blogs as I figure out where this leads.

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.

Attend medical appointments with your loved one and share your perspective so the doctor can get the whole picture.

This afternoon my husband gets to see his neurologist/movement disorder specialist. We visit in-person once a year and do a virtual visit once a year. In the beginning I went along because I wanted to learn as much as possible about his diagnosis. I quickly figured out that it is valuable for me to be there because my husband may minimize his challenges. In fact, I attend all my husband’s medical appointments including his vision and PT. I know his dental team and, while I don’t go in the room with him for those appointments, I do keep in touch with them. His entire medical team needs an honest assessment of his progress on this journey. If they don’t know about everything that is going on, they can’t recommend the best treatment plans for whatever their specialty is.

Preparing for these visits varies based on who he is seeing. Most of the time we will have a conversation about what we want to emphasize on our way to whichever doctor’s office. I jot significant things like falls on my calendar and we pull that out to review things that happened since we last saw them. When meeting with his neurologist, we often make lists so we don’t miss anything. I write a list and compare it to his so there are no surprises or difficult conversations in the doctor’s office.

The important thing to remember is that the doctors can only work with what they know. I schedule appointments at a time between meds when he is feeling strong and doesn’t get exhausted. They need to know that this may not be his typical presentation. There probably are times when my husband wishes I wasn’t there because of things I share, but it has to be done. And, if there is something I don’t have time or feel comfortable saying with him in the room, I reach out to his doctor before or after the appointment. The medical team appreciates having my perspective, my husband appreciates having a second set of ears in the room to hear instructions, and I appreciate being kept in the loop on his current treatment plans. It’s a winning process for everyone.

Acceptance is not a one time decision. It’s an ongoing process as your loved one’s illness progresses.

When my husband first received his diagnosis, it took me a while to get my head around it. I wanted to be here for him whatever that looked like but was terrified at the same time. I finally found the strength to accept what was happening to our lives and our future without really understanding what acceptance might mean. I knew that I loved him and that we had made commitments to each other. I decided to do my best to have a good life regardless of the complications PD might bring.                                               

What I didn’t realize was that accepting the diagnosis was just the first of many changes and challenges I would have to accept in my role of CarePartner. As his symptoms have progressed, thankfully at a very slow rate, my caregiving/caretaking skills have had to progress too. In other words, as his abilities decrease with time, my capabilities and capacity have to increase to meet his need for assistance. My most difficult challenge is accepting the emotional toll as I see a little less of the man I fell in love with every day.

Our lives have been going well lately, well becoming a relative term when you live with someone who has a chronic illness. If I compare my life today to that a few years ago, I would say things are not so well. The Caring Partner role I play has changed significantly and it has taken a boatload of acceptance. That is why I need to focus my energy on what is happening today and not look back to yesterday or forward to tomorrow as we continue to move along this shared Parkinson’s journey.

The Parkinson’s Journey takes strange twists, your role as CarePartner must be flexible enough to go with it.

My husband is diagnosed with typical Parkinson’s Disease. That diagnosis has not changed as his symptoms progressed. This is significant because the Parkinsonism umbrella is large and includes several atypical versions of this neurological disorder that look like PD but aren’t. Those diagnoses are not always seen early in the illness and are often added at later stages. They are called Parkinson-plus syndromes and include MSA (multiple system atrophy), PSP (Progressive Supranuclear Palsy), DLB (dementia with Lewy bodies) and CBD (corticobasal degeneration). Treatments for each may vary but the role of CarePartner doesn’t change.

It is interesting that these newer sub-categories didn’t exist 30 years ago when we were dealing with my father’s diagnosis. Looking back it is obvious that he had DLB (dementia with Lewy bodies) but it was never defined as such nor explained to us. Still my mother did everything she could to keep him at home until his behaviors became dangerous and he had to be hospitalized to protect both of them. Will on-going research be able to even more clearly define the differences within Parkinsonism and help create better treatment plans for the many different categories? We can only hope.

Getting back to my original thoughts, I was talking with a fellow CarePartner who said the doctors now think her husband actually has MSA (multiple system atrophy) rather than PD. They have taken him off his carbidopa levodopa because it wasn’t helping much. The change in diagnosis doesn’t change her challenges in caring for him. She was concerned because the doctor told her that his life expectancy is less than regular PD, but she still stands ready to help him fight the upcoming battles.

As a CarePartner, I am called upon to acknowledge my husband’s illness, accept the changes and absorb the impacts. If things shift, I must shift with them because I know together we can weather whatever storm, under whatever name, Parkinson’s decides to throw at us. My role in this journey doesn’t change because doctors someday decide my husband has something else. I simply need to be ready to love and care for him the very best way I can regardless. 

Being a CarePartner can engulf you. It is important to have interests outside that role so you are not totally lost when it goes away.

This is not something I like to think about let alone write about. My husband is older than I am and has a progressive illness so I will probably outlive him. In the time since my husband was diagnosed we have watched so many of our friends pass away leaving their CarePartners to figure out life after PD. I find it difficult to even imagine what that will look like.

I had coffee yesterday with a friend who recently lost his wife. He was her primary caregiver until briefly before she passed. He felt that he owed it to her and would not listen when even she told him it was time to ask for outside help. His life was 24-7 caregiving for her with no time for self-care. I compare that to a couple of other friends who lost their husbands. They were also primary carers but did accept in-home help. They recognized the importance of self-care and had outside interests. My male friend is six months into his bereavement and still struggling with how to rebuild his life. My female friends are grieving too, but they are also travelling and reconnecting with family and friends.

I don’t want to be lost myself when my husband passes. I want to have room for grief and also room to move forward in life. To that end, I have in-home care and a regime of self-care that includes gardening, exercise, socializing with friends, and simply escaping the confines of our PD lifestyle on occasion. I am able to do this without taking away from providing for my husband’s needs. In fact, I think I am better able to care for him because I am taking care of myself. I believe that having a life beyond my role of CarePartner now should serve to help me transition when he does pass. Hopefully I won’t be facing life post Parkinson’s for quite a while yet, I’m not ready yet to say that final goodbye.  

Getting to know the people in your support network for more than the Parkinson’s connection may prove to be beneficial as long as differences in values don’t derail a much needed relationship.

We were having a family dinner a while back and started discussing politics, something we mostly agree on. I shared that we have friends who don’t necessarily hold the same ideas in our PD network and it is interesting to consider how they come to their views. Someone said that they believe all of their friends are of the same mindset, that is the connection that brings them together. In that moment I discovered another reason to be thankful for my husband’s diagnosis. It broadens my world to include those who may not have the same philosophical beliefs yet who share a common enemy, Parkinson’s Disease.

This disease isn’t selective so the people in our Parkinson’s community come from all different lifestyles and backgrounds. It’s easy to discuss the common thread that brought us together which is our hatred of PD, it’s not so easy to talk about current events. I do think that topic could lead to some very interesting conversations. I wouldn’t want to see our different viewpoints split us up because I need these folks in my life. While I would like to know them better as individuals and let them know me, I’m not sure quite how to make that happen.

The greatest value of being a part of this community comes from our shared experiences. I can talk openly about challenges I face in caring for my husband and ask their advice with difficult decisions. It is great when I can pick their brain on practical issues as well. They often have knowledge that can help me with daily challenges outside the PD world. Maybe someday we can find a way to respectfully discuss our differences and, I suspect, agree to disagree. The support we give each other is based on values and compassion that go beyond thoughts of politics or religion. In this friendship, does the rest really matter?

Finding a way to step away from Parkinson’s, even if it is only for a short period of time, can be a great way to recharge your relationship with your loved one.

We went for a drive to a local resort for lunch recently. We were only gone about two and a half hours and planned so it was between medication times. We had to bring along my husband’s walker, but otherwise it was as much of a PD free experience as is possible these days. The weather was perfect, the drive was beautiful and lunch went well. There was even time for a short walk around the grounds. As I mentioned, we were back just in time for his next dose of carbidopa levodopa and a nap. It was such a nice visit we’re considering returning and spending a night.

Some days it truly feels like we’re immersed in Parkinson’s Disease. If my husband’s pill alarm isn’t going off then it’s time for him to exercise or do his speech practice for the day. We are surrounded by reminders of his challenges, the transfer poles in the living room and bedroom, grab bars in the bathrooms and door handles throughout the house. All the modifications we’ve made to our home to make it more livable are great but also keep us grounded in his diagnosis.

It can be difficult for me to see the man I feel in love with amidst all the requirements of his treatment. Leaving all the trappings of PD behind gave us both the chance to be someone different. On that one day, we were able to revisit our earlier selves and connect in a different manner. Even for only an hour or so, it was well worth the effort and I think we are going to have to do it more often while we still can.

Encouragement can sometimes look and feel like nagging. That’s okay.

I spend a lot of time doing things for my husband that he used to do for himself. It has become the natural state of things. What I forget sometimes is that this disease has ups and downs, good days and bad. He may not always need my help. Am I sometimes guilty of doing too much? Probably, it’s tough to know just how much help is too much. I try to step back and encourage him to try things before taking over. Sometimes I delay a bit before coming to assist. I have found that occasionally it works and I think his capabilities surprise both of us. But it is not always that way.

There are times when I feel I am too bossy as I push him to do more. It even seems like maybe I’m being mean or neglectful. I lose sight of the concept that something he couldn’t do yesterday, may be possible today. Or vice versa. Parkinson’s is unpredictable and his symptoms can vary by the day, even by the hour depending on how meds are working or where his dopamine levels are. I need to encourage him to do as much as possible in every situation but be ready to step in when things just aren’t working out.

“Are you okay?”, “Do you need help with that?”, “How’s it going?” and similar comments come out of my mouth what seems like a hundred times a day. I’m sure he gets tired of hearing them just as I get tired of saying them. But, I can’t know where his limits are unless I ask and those limits often change. So I keep on asking, even though it may seem like nagging at times, because that is the best way I know to encourage and support him. And I hope he understands why.