They say we learn from our mistakes and I think that is why our brains are hard wired to hold on to bad things more than good. It is easy for me to remember when I grumped at my husband yesterday, it is harder for me to pick out a time when I was kind and loving. And that is not because it happened any less, it is just that we focus on areas we need to change or improve and not on when we are already doing the right thing.

I have been told to take time every night before bed to think of three things I am thankful for from my day. I have realized that it is more important for me to think about three things that I did well or right during my day. If I can shift my focus from the negative to the positive, it helps me let go and find peace.

Yes, I will make mistakes and it is important that I learn from them. If I am going to hold myself responsible for everything that goes wrong in our days, I need to also acknowledge and celebrate the things that went right, no matter how small they are. And, as I begin to recognize when I am doing things right for my husband, the things that go wrong will take less importance. Days that are filled with positive, not negative feelings, will result in a more pleasant journey for both of us.

He may not be perceiving things in the same way I am and may feel my help is intrusive. He may not want to accept help with a task because it is embarrassing for him or too personal. I may be doing things that make the task more difficult for him, not easier. There are a ton of reasons why my husband may not want my help with something and I need to be able to accept that and let him be.

I am his wife, his lover, and he didn’t marry me for my nursing skills. I am not a personal hygiene aid, a nail technician or personal assistant, yet I am constantly being put into those roles as his CarePartner. I have become a taxi driver, a dietician, and even a critical care nurse without any training at all. These are not things that I expected to do and it is no wonder that my husband may not want me doing them for him. It has the potential to change the dynamic in our relationship and neither of us want that.

So, I do what I can for him while respecting his wishes and trying to protect his dignity. If possible, I wait until he asks for my help on personal matters rather than offering it. We both need to accept that at some point someone else will be coming into our home to provide help. In the meantime, there may be things that happen that make both of us uncomfortable, we will just have to work through those as best we can.

Full engagement for my husband may involve taking an extra nap in those lower energy “bad” days but it definitely does not mean sitting around doing nothing at all! At the very least, we need to make sure we exercise (yes, I said “we” because the best motivator is an exercise buddy and it certainly doesn’t hurt me to stretch and move either). On those days when he is feeling a bit off, sticking to his schedule as much as possible really seems to help. He may need encouragement to participate and I may need to pay a little more attention to make sure things are happening when they should. We both need to remember that bad days only come once in a while and tomorrow will be better.

On the “good” days, when he is feeling full of energy and ready to take on additional stuff, I need to be present to make sure he doesn’t try to do too much. I understand that he wants to be able to do everything he did before PD, unfortunately that is no longer possible. So, again, I pay attention to make sure he is safe and yet give him the freedom to make choices for himself. And, he sometimes surprises me such as the other day when he unloaded the dishwasher for me or last week when he ran the vacuum while I was out.

Our normal days are neither good nor bad, or perhaps they actually contain elements of both. There are periods during the day when things go smoothly and other times when the only answer is to take a break. Whatever the day brings us, I try to make sure that we find times to talk to each other to make sure we are connecting. Life with PD, whether you have it or love someone who does, can be lonely. Engaging in our daily lives, sharing small tasks, connecting on a regular basis can help him, and me, make it through.

My father had severe psychosis with his PD diagnosis that presented mostly late at night with delusions and violent outbursts. This was 30 years ago and his doctor prescribed tranquilizers, something we don’t see used much anymore. It didn’t really help, the delusions were still there, he just couldn’t act on them as quickly giving my mother more time to get away from him and call for help.

My husband and I have talked a lot about cognitive changes he might encounter. It is important that he knows he can tell me if he sees things that aren’t there or has disturbing thoughts because there are physical reasons this happens. One explanation for the hallucinations is that his brain misperceives the messages his eyes are sending. Somewhere in his brain’s neural routing processes, things go haywire and he either can’t complete the thought or he misidentifies things. In my father’s case, he was delusional and held beliefs that just weren’t true. It did no good to try to talk him out of them, they were a part of his reality.

No one can tell me whether my husband might develop this as his disease progresses. Lots of information is available about Parkinson’s Psychosis but no one can explain what causes it or how to accept it if it happens. This stage of the illness is often more upsetting for CarePartners than for our Person with Parkinson’s because we don’t know what to do to alleviate the problem. All we can do is try to understand, look for patterns of when it is happening, share information with the medical team and be patient. Remember, it is the disease not the person.

For more information, check out the Primer on Dealing with Hallucinations and Delusions on the Davis Phinney Foundation’s website, or this article on the Healthline website Can Parkinson’s Disease Cause Hallucinations?.

We chose this house originally because it was a single story and a simple floor plan. We have since made a few changes to open up areas that were tight including removing some hallway closets and a wall that separated our kitchen and family room. I don’t know that either of us will end up in a wheelchair, but we might, and are working to prepare for that possibility.

We recently did a walk-through an Occupational Therapist and it really helped me see little things I could do to make life easier and safer. She pointed out things like raising the bed to make it more accessible for my husband. We talked about throw rugs and falling hazards. We talked about what happens in our daily lives, especially where there have been falls in the past. My husband and I both had to stop and think whether there might not be safer ways to do many of our household chores.

She will be back to visit this week and I am so excited to share the changes we have already made. The bed is higher and it has made getting up in the mornings easier. We have new non-slip rugs in the bathroom, we even purchased a new couch with a higher seat. While we have been making modifications for my husband, I decided it was time to replace doorknobs with lever handles that are easier on my arthritic hands. After all, I live here too, shouldn’t it be an accommodating and happy space for both of us?

I want to be like the hollyhocks growing in my back yard. I planted them last year and they have finally reached their maturity to bloom. Twelve feet tall and beautiful, they epitomize strength and resiliency. It is fascinating to watch them as they dance in the breeze. Even rain couldn’t knock them down, they yield to the challenge but don’t break. I need their strength and resiliency as I face the daily struggles of being a CarePartner.

While we may have a structured home life thanks to my husband’s Parkinson’s Disease, I never know for sure what additional tasks I might encounter. By maintaining a flexible mindset, I have the freedom to make it through my normal daily challenges and still be open to any new tasks that arise. It also allows me the opportunity to say no, not now honey, and to find an alternative plan to face whatever that new issue might be.  

Getting back to the hollyhocks and the lessons they share, the first is patience as it takes 2 years for them to mature and then they only bloom every other year. The second lesson is their strength as they grow on narrow stalks to heights unimaginable. The third thing they bring me is resiliency as the winds may buffet them but they continue to bounce back. Finally, I see their quiet dignity as they stand tall in my garden, bringing me pleasure and peace. May I be a hollyhock in my day today as I work to love and support my husband.

Is it normal aging or is it PD? Be sure to discuss any changes you observe with your PwP’s medical team because sometimes it is difficult to know the difference. My husband’s memory is tested regularly as part of research projects or at his check-ups. He does struggle with one or two of the tasks and there are signs of mild cognitive decline. When I sit in the room with him during the testing, I find myself wondering how well I could do counting backwards by 7s from 100? He is still able to pay bills and balance the checkbook, perhaps better than I am, do I need to worry that he may be slipping into dementia thanks to his Parkinson’s?

Yes, he has PD but it is important to remember that he is also getting older. He will have aches and pains that have nothing to do with his diagnosis. Additionally, he will have some memory loss and potential cognitive decline because it happens to us all when we age, that doesn’t mean I should panic nor should I ignore those things when they do happen.

It won’t always be about Parkinson’s but his medical team needs to know whenever I see changes happening. If I bring these things up at his appointments, we can discuss whether they are PD related or not as they try to accurately treat the progression of his illness. And, perhaps more importantly, we can all be on the same page as we move forward.

Bradyphenia, another one of those medical terms that we will hear thanks to this diagnosis of PD, simply means slow thinking. It refers to the fact that my husband can still process thoughts, it just takes longer for the signals to move through his brain and some of the details may get lost along the way. This slowness can impact how he does things and will cause difficulties as he tries to interact with the fast-paced world around us.

His slower reactions are frustrating and I often find myself waiting for him or doing things myself to get them done. My frustration also shows when I attempt to finish his sentences for him or when I take over in all transactions with others outside of our home. It is not a matter of “if you want it done right, do it yourself”, because he still has the capabilities for most of the tasks. Instead, it is more a matter of “if you want it done quickly, do it yourself”.

I need to remember that the slowness that is reflected in his body also exists in his brain forcing him to carefully process every move he makes. The knowledge is still there, it is the connections in his retrieval systems that are going haywire. There are a couple of things that I can do to help him. First, I can be a buffer to the world allowing him the time he needs. And, second, I can give him the time and respect he deserves because I know his journey is so much harder than mine.

It’s difficult for me to accept that my husband will probably pass away before me yet it is a fact of life. Not only because of his Parkinson’s Disease, but also because of our age difference and his gender. It is difficult, it is depressing, yet it is also an important component of how I need to live my life now. I need to make sure that I have outside interests that extend beyond being a PD CarePartner or losing him will be even more devastating.

It may sound selfish, but the best way for me to care for him in the present is to prepare myself for the future. That includes considering where I will be after PD is no longer a part of my life. I have connected with a couple of friends who lost their partners recently and they both shared that it has been a difficult transition. As one put it, I am still trying to find my new role in life. Thankfully they both have family, friends and community connections to help see them through. I really appreciate their insight as I look forward to what will probably be my struggle one day.

There will be a time when our journey with PD ends. I hope it is not for many years yet, but never know for sure. I can begin to prepare for the next part of my life by making sure I have a life now. It doesn’t mean I won’t still be here for my husband; it just means that I am strengthening my connections to people in my world who will be here for me after he is gone. They won’t make up for his loss, but they can help me find my way through to the next portion of my journey.

Lots of things have changed thanks to my husband’s diagnosis. What I need to remember is that I am not responsible for those changes nor fixing the challenges they bring. I can only work with him to try to minimize his symptoms to the extent that he is willing to let me. When I try to change things to make his life easier based on my own observations, it usually doesn’t work and often causes additional stress between us.

I get upset when he helps me without being asked because we approach tasks differently and I doubt he is going to do it the way I want. Knowing this, why am I surprised when he isn’t thrilled with my “new solution” to his stability issues or my “fix” for helping him get out of bed in the morning? Doesn’t he understand that I am just trying to help?

If I am truly attempting to support him, I need to use my ears more and my eyes less. I need to listen fully to what he perceives the challenge to be and work with him to come up with a modification together. He needs to be fully engaged in finding answers that might be useful and that he will try. Otherwise, I am just adding to his problems and wasting my time, not something either of us need.