Author: cptricia

Staying positive and patient during times of change can be difficult.

We are getting to welcome two new caregivers this week. That means I am getting to break two new helpers in. It is good in that it gives me the opportunity to review what we ask of them and can make needed revisions. It is challenging in that I am not great at supervising others and really don’t like having strangers in my home. I am going to have to call on all my patience as I get things set up and running. I just keep telling myself that it is a temporary situation and that once they are trained all will be well. At least I hope so.

Change can be difficult for my husband too. Meeting new people and letting them into his circle of support is not always easy. We have had caregivers who came one time and he told me “never again”. We have had people he tolerated but didn’t really connect with. We had one woman who put in earbuds and didn’t hear him when he called for assistance and another who stepped outside to make private calls leaving my husband alone for extended periods of time. We both need to be able to trust that whoever comes is caring for him appropriately and keeping him safe.

In the three years we’ve had in-home care, we’ve gone through close to a dozen different people. I am hoping that these two new caregivers will bring a positive attitude and engage well with him. We shall see because regardless of what I think, his opinion matters most. He has to be comfortable with whoever we hire or it just won’t work. And I really need for it to work.

Don’t be afraid of requesting in-home medical care when it is available.

I wasn’t sure what in-home medical services looked like. I knew some of our friends were utilizing them but didn’t really think my husband would qualify. He was still somewhat mobile, granted with assistance devices, but I never really thought of him as housebound. Then his new Primary Care Physician took one look at him, asked a couple of questions and opened a new line of treatment for him. She asked if he could walk unassisted and if he ever left our home on his own. How difficult is it when we do leave? Based on his responses, she referred him for in-home Physical Therapy.

Having been through PT in a clinic setting so many times with limited success, I have been really surprised by the difference doing it at home makes. When the Therapist visits and works with him in his normal environment, they are able to see his full capabilities. They also work with what is available so he is doing some exercises at the kitchen counter and has a walking path in the entryway and living room to practice his gait. He uses his transfer poles to do high knees and has a chair with pillows for sit to stands.

I regret not looking into this possibility sooner. It hasn’t changed any of his other treatment plan, he still sees his regular PCP and neurologist, but if we need more services they are available to him. The organization that provides his PT also has Occupational Therapists, Speech and Language Therapists and Nursing services. All we have to do is ask. I finally feel like we may have access to that team we were supposed to have all along. Why isn’t this the standard of care for people with Parkinson’s?

Somedays it will feel like you can’t face all the challenges that come with being a Parkinson’s CarePartner. Remember that it’s only necessary, actually possible, to face and overcome them one at a time.

There are days when I wake up and wonder if I have what it takes to get through. My mind starts running over what needs to be done and I get caught up in the enormity of it all. I have to shut those thoughts down, force myself out of bed and get started. Somehow, once I’m up and moving it all seems to fall into place and everything occurs as needed.

Mulling over everything that must be done benefits no one. Instead if I respond with what needs to be done in the moment it all magically happens. It’s a mindful approach that keeps me focused and headed in a positive direction. Wasting time thinking about upcoming challenges wastes my energy, something I don’t have to spare most days. I’m not saying that we don’t give thought to schedules such as figuring out when he should do his PT routines. We create a timeframe for our day then just work it.

I don’t want to minimize the work I do as a Caring Partner, it is difficult and can be exhausting. It must also be manageable and the best solution for me is acceptance. Understanding  and accepting where my husband needs assistance and how I can offer it. No ruminating on ‘what if’ or ‘if only’, we have what we have. I can make it through by tackling challenges as they come and not worrying about them until they come up again. Because they usually do and I will be ready.

Having in-home care is great until it isn’t. It’s important to understand the purpose of having help and when to adjust that help to better fit your household.

That’s long winded way to say that sometimes I need to step back and make sure that the helpers coming to our house are meeting my needs as well as providing care for my husband. If they are not, I need to adjust and, perhaps, even change things up. Caregivers we hire are actually here more for me than for him, something I didn’t fully understand in the beginning. The more I am able to accept this, the more effective the process becomes.  

We recently added a young man to our schedule, he cares for my husband one day a week. He seems good and willing but is very inexperienced so it is taking some training on my part. Which is okay, I would rather take the time to show him what needs to be done and get it done right rather than have to redo it after he leaves. Because having caregivers is not supposed to add to my stress or workload, it is supposed to provide relief.

The latest change is that our other caregiver is taking a job with a different agency and will be leaving after this week. The timing is interesting because I had just spoken with her supervisor about a couple of issues we were having. My hope is that our agency will find someone to replace her quickly because I really like having two different people coming. I don’t mind the change since it will give me a chance to help someone else learn our system and avoid issues before they happen. Plus, it never hurts to have back-up.

We all need to find purpose in our lives and the only purpose CarePartners have can’t be “to provide care for my loved one.”

Wow, this is such an easy trap to fall into. I wake up in the morning and my husband is there needing my help to get out of bed. I spend much of my day working with him on his activities of daily living and trying to make sure his day goes well. By the time I help him back into bed at night, I am often exhausted. I used to hear all the words about “self-care”, but I didn’t really understand the importance or how to make it happen in our busy days. His care had become my only purpose.

I’m not sure what it was that finally triggered me but I realized that immersing myself in his disease wasn’t healthy for either of us. Our world was shrinking when everything we did had something to do with Parkinson’s. We had little or no contact outside of the PD world. It was when I started trying to write about things other than our journey that I realized I could have my own interests without taking away from caring for him. As a matter of fact, those other activities that I take part in bring new conversations and have opened up windows in our current situation.

Having in-home care helps me manage my outside stuff but it isn’t absolutely necessary. I can write while he is napping and have connected with some great writer’s groups through the internet. I wouldn’t say that my purpose in life has become to write the great American novel, but it has become to find additional personal enrichment alongside our PD journey. I’ve even joined a social group that has nothing to do with writing or PD and our world hasn’t fallen apart. Caring for my husband is still a big piece of my purpose but caring for me has found its way in too.

Try to be understanding when your loved one wants to do things they really shouldn’t, especially if they are watching you struggle to do those same tasks.                                                                                        

We recently had a small painting project that I wasn’t comfortable completing so I reached out to our neighbors to see if they would be able to help. The couple were happy to do the work for me and did a much better job than I would have managed on my own. I was very grateful to them but, It also helped me realize how my husband must feel watching me do things he used to do. It must be just as difficult for him to see me muddling through his former tasks as it was for me to watch the neighbors that day. Even after handing the task off to them, I wanted to be out there helping.

One conversation my husband and I have often is about bushes we planted in our backyard. He can no longer handle trimmers safely so caring for them has become my job. He always kept the bed tidy whereas I trim once or maybe twice a year depending on the bush and how fast it grows. He has decided that maybe I shouldn’t be climbing up into the flower bed to trim them back at all, I might fall. He wants me to let our garden guy do the work for us (perhaps thinking he’ll do it more often?), whereas, I enjoy getting out there and whacking on things. It’s a great stress reliever and gives a real feeling of accomplishment once I’m done. But is it really about me doing it at all or the fact that he can’t anymore?

I know gardening wasn’t his favorite activity, but it was his to do and he did it well. Does he feel a loss when he has to sit and watch me doing what were once his tasks? Does it trouble him knowing he can’t get out there and help me? Perhaps I need to approach these conversations with compassion rather than look at them as a power struggle. It may not be as much about who is doing the work as it is about who is still able to do the work. Yard work, whether he enjoyed it or not, may just be one more thing that Parkinson’s has taken from him. 

Meeting a new medical professional happens often with Parkinson’s. Preparing ahead of time can be very helpful.

My husband has changed Primary Care Physicians twice in the past 6 months. The first time was our choice and we were happy with the new doctor. Then he decided to move and we were given over to a different doctor within the same clinic. We are also in the process of setting up some in-home physical therapy for my husband to see if it will help rebuild his leg strength. So far we’ve met with a Nurse Practitioner and are looking forward to meeting his PT.  As these changes take place, we are encountering lots of new people who will be helping care for him. All of this has imvolved several “get to know you” conversations.

One thing that my husband always says when meeting a new provider is “I want to be treated like any other patient. I want you to set aside my Parkinson’s diagnosis and look at me instead.” While some  of the practitioners are only connected to us because of his PD, it doesn’t mean they should close their eyes to other things that might be happening. It is too easy to blame everything on his Parkinson’s and not look deeper to see what else might be going on.

We prepare for these conversations in advance by printing a current list of all his medications and making sure it’s accurate. We talk about what we each want to see from the upcoming visit and what we might need from the new practitioner. We create a list of questions or concerns to have ready for the discussion so nothing is missed. By doing just a little bit of prep work ahead of time the visits go much better and my husband gets the care he needs and deserves.

There are several great checklists online, we particularly like the worksheets found in the Davis Phinney Every Victory Counts Manual  or on the Michael J Fox Foundation website.

The road ahead with Parkinson’s is uncertain and challenging. Having conversations about possible upcoming decisions can smooth the pathway later when they become real.

Looking back on our early years, I was not sure what to expect after we received this diagnosis. My father was diagnosed with Parkinson’s way back when so I thought I had a clue. I was so wrong. Our journey, my husband’s presentation of the disease, has been completely different from what my father faced. What I did know, however, was how ugly it could be and we talked some about that. I had watched my parent’s struggle and wanted better for us. Thankfully, our relationship was already based on regular communication and weekly check-ins so discussing his PD was folded into those conversations.

We discussed how his tremor and stiffness might impact his driving before it became an issue, always focusing on the physical ramifications of this illness. When it came time, it was an easier decision for him to stop driving because we had talked about safety concerns and alternatives. When he needed to stop climbing ladders, cooking, using electric tools, he was open to these limitations because we had already discussed them. Safety and the restrictions of his Parkinson’s Disease were always the reasons, never personal deficiencies. He was not to blame for the challenges we were facing.

Our latest conversations are around how to make sure he is receiving the care he needs. What will happen if we reach the stage where I am not able to care for him or, heaven forbid, if being at home is not the safest option? Parkinson’s Disease brings difficult decisions for both of us. Talking about them before actually having to make them puts us on the same page. It also lets me know what he wants moving forward as well as gives me permission to make those decisions alone should that time come.

Advocating for your loved one may mean being persistent and making sure they are heard.

We met my husband’s new Primary Care Doctor last week. It is the second change in the last six months and I really like her. It was obvious that she had gone through his file before our meeting and was ready to learn more. She actually listened as he told her he wanted to be treated just like any other patient, not like someone with Parkinson’s. And when we left, he had a plan of action that made sense for him, I think this is a good change.

Unfortunately not all members of his medical team are as willing to listen. He has been receiving treatment for a sore knee from an orthopedic PA and we had an appointment with her yesterday. She was expecting to give him a cortisone shot in his knee and even when he told her the last one didn’t work, she kept on prepping him for the injection. I finally had to stop her and say, “you heard him tell you he doesn’t want the injection, right?” She looked at me with a strange look on her face as if to say, well, why are you here then?

I try very hard to let my husband speak for himself when at his appointments, however, I also need to make sure that his wishes are being followed. That can mean taking things to the extreme and asking for a new doctor as I had to last year, or simply stepping in and making sure the professional is listening as I had to yesterday. My job as CarePartner is to make sure he gets the care he wants and deserves. That means advocating for him to make sure everyone hears what he has to say. Sometimes I have to be the greasy wheel to make sure best care happens. 

Adventures can be great but can bring unexpected consequences.

I decided to take my husband out yesterday afternoon. A local winery advertised live music on their patio and they make great brick oven pizzas. It was something we had done many times before, just not recently. I didn’t understand how much the challenges of this activity might have changed for us. We took my husband’s walker, but the walk into the winery is longer than he is used to and we had to stand a few minutes to order before going outside to a table. The chairs were metal without cushions, uncomfortable and hard to move. He chose a sunny spot, I got him settled in and finally, there we were.

We enjoyed our pizza and cider as we listened to the live music. It really was a lovely way to spend a sunny afternoon. We were only able to stay about an hour before my husband was ready to come home but it was a good break for both of us, however on the drive home he became really quiet. Once we got home he napped for over an hour, didn’t want any dinner and was out of sorts the rest of the day.

What we figured out was the combination of a single glass of cider and the sun were perhaps too much for his system. He was dehydrated and exhausted after just one hour. He had mostly recovered by bedtime and slept really well. If we do this again we’ll take his transfer chair, he’ll have a soda instead of cider, and we won’t sit in the sun, no matter how tempting it is.