caregiving

It’s okay to get angry and to express your anger as long as it is positive and directed at the right target.

By target I actually mean the real reason you are angry or the problem that is causing the anger. I’ve said this before, it is okay to be angry at Parkinson’s for the challenges we face, it’s not okay to be angry at my husband for things he can’t do anything about. However there are things that happen within that dynamic that make me angry, things he does have control over. I need to be able to express those feelings or they will eat away at me.

My husband will not accept assistance with certain daily tasks unless it comes from me. I get it, he’s embarrassed or uncomfortable when asking for help. But…and this is a big one…that help is often exactly what I need. Our caregiver is trained and ready to help wherever it is needed. When all she gets to do for him is stand by, it becomes less a caregiver role and more of a babysitter role. As soon as she leaves at the end of her shift suddenly he needs the toilet or he needs a snack or he needs something else. I get angry at him when he won’t accept help that is here and waiting for him.

A quick example, it was less than 10 minutes after our caregiver left the other day when my husband called for help in the bathroom. I was in the kitchen starting dinner prep. The disease may be why he needs the help but he does have some control over the timing. I have to admit that I shouted a bit, I was angry and really needed to let it out. Plus I needed for him to understand that this was a big issue for me. I think I accomplished both of those things, we’ll see if it makes any difference.

Constant stress is a component of the journey. Be mindful of the tools you use for relief.

I have mentioned this statistic before, more than 60% of spouses caring for their partner with a chronic illness die earlier than their non-caregiving peers. The constant stress we face is a huge contributor to our higher mortality rate. I am on duty with my husband 24 hours a day and, other than the hours when we are both sleeping, I am checking to make sure he is okay. I even sometimes wake in the middle of the night and listen for his breathing. This continual state of alert takes a toll on my health.

My stress reduction plan includes exercise, deep breathing, taking breaks to read a good book and journaling. Weekly yoga classes provide an opportunity for meditation, neighborhood walks are great for clearing my head. Reading alongside my husband allows for a mental escape and gives us something to talk about. In those moments when I feel like I’m about to explode, nothing calms me faster than to step back and take a couple of deep breaths.

I often joke with fellow CarePartners about the value of a good glass of wine on a long and difficult day. Or even on a normal day, come to think of it. Those single glasses of wine are acceptable as long as they are only one piece of my stress relief program. Chocolate and other sweets are also options for dealing with the daily pressures. Again, not a problem when eaten in moderation. I just need to remember that sticking with my healthier choices like exercise and journaling keeps me present in the moment, which is always better for my husband and for me.

For more on the stress we all face as CarePartners, visit “Caregiver Health” on the Family Caregiver Alliance website. To learn more alleviating some of that, visit “Caregiver Self-Care: Caring for You” on that same website.

Don’t downplay the challenges you are facing as a CarePartner. Your journey is just as difficult as that of your loved one.

When I started writing this blog almost six years ago, I wanted to share what I was facing as a PD CarePartner and perhaps be able to figure some of it out. What I am saying is that if you are reading this hoping to find answers for your loved one, you can stop now. However, if you are looking for what you might face on your journey loving someone with Parkinson’s Disease, read on and I hope you find my words helpful. Because the diagnosis your partner received will impact the relationship you share and will change your life forever.

My husband has a group of medical professionals who are all focused on keeping him healthy. I think that is great but wish that, just once, one of them would turn to me and say “how are you doing?” They ask for my perspective on him but never check in on me. They watch for anxiety and depression in my husband but no one is looking to see whether I am okay. Let’s face it, having the person I love taken away a little more every day is a classic situation for me to be anxious and/or depressed. It’s like his doctors see me as a therapeutic tool or aide, not a person with feelings of my own.

Yes, my husband is the one having to fight the symptoms on a constant basis yet I am the one who has to stand by and watch. I have to be ready to step in whenever I am needed. I am in a constant state of alert just in case something happens. Add to that the additional chores around the house that I find myself responsible for now. My life has been upended as much as his. So, I don’t feel guilty for resenting the changes this disease has brought to our lives and I don’t dismiss my pain and loss.  My story, all of our stories as Caring Partners matter too.

Worry, anxiety, anticipation can be as exhausting as physical activities. Find ways to give yourself a break from these stressors.

I look back at my day and wonder why I’m so tired. I don’t recall doing anything that was physically taxing yet I feel like I’ve run a marathon. It was a day when we didn’t have any outside help, could that be the reason for my complete exhaustion? My husband was having a low energy day so I was more on alert than usual, watching him to make sure he was okay, perhaps that has something to do with it all?

Taking a break on those worry filled days would be great, but how? Most importantly I need to recognize what’s  happening. Too often I am so caught up in the moment that I can’t see the bigger picture. Taking a break has to start by simply taking that break. Give myself a moment to think about what’s going on. If my husband is having a tough day, is there anything more I can do to make it better for him? The answer is usually no. Next I need to ask if there’s anything I can do to make the day better for myself. That answer is usually yes and involves either taking a walk, sitting with a good book, or maybe just some deep breathing. Whatever will help me break the cycle of stress and anxiety. Once that’s done I can get on with my day and let him be.

It may sound self-centered, but unless I am willing to actively put my needs first, I am not able to be here fully for my husband. I know that I have said this before, yet sometimes I forget that my mental and physical health is more important to the dynamic of our journey than his. My husband is on this PD trajectory and, while we can’t control it, we can work together to fight it. My worry, anxiety, and anticipation of what is going to go wrong next are stressors that negatively impact our lives and are things I can control. In order to be here alongside him, I must take care of me. It’s not selfish, simply a fact of my life as a Parkinson’s CarePartner.

The help you want from caregivers as a CarePartner and the help your loved one is willing to accept may be different. Be open to their concerns and negotiate mindfully.

If I could ask for help with my husband based on when I need it most, it would be those first couple of hours every day. I would have someone come in to make his breakfast, help him shower and get dressed. They would help with his shoes and socks and be available if he needed additional support getting ready for his day. And while they were working with my husband, I would be having breakfast, reading the newspaper, writing in my journal, catching up with emails, taking a shower and getting myself ready for the day.

Unfortunately, that doesn’t work for us. My husband doesn’t want anyone else helping him with his more personal tasks and I can understand that. There are things that the state won’t allow his caregivers to do, like shaving him with a razor or clipping his nails, so I get to do all of those. The closest I get to taking a break with the morning schedule is on days when we do have a caregiver coming and he agrees to switch his shower for an upper body sponge bath when they arrive. It’s a compromise that we worked out so I get a bit of a break and he gets to maintain some of his privacy.

We both need to understand and agree on the role caregivers can and should be playing in our home. It is not easy for either of us to have a stranger coming in to care for him. It’s important that we are able to communicate about these things and that we are able to negotiate when we have a difference. I try to respect his need for independence and ask that he respect my personal limitations. There are always going to be times when I need more or he wants less, we just need to be open to working together and making this difficult component of our journey better for everyone.

Make sure that paid helpers in your life, and especially the agency they work for, understand their value.

Monday was International Nurse’s Day, a good time to recognize the Certified Nursing Assistants who provide care for my husband. I was able to give thanks to our Monday helper but, unfortunately, our Wednesday caregiver called in sick. The agency didn’t have a replacement and their scheduler apologized for the inconvenience. While I truly do appreciate the help, her apology didn’t set well with me because I am not sure she understands what not having them here means to me. It goes so much beyond an inconvenience, they have become my lifeline.

Without a caregiver I missed my yoga class, a key component of my self-care program. I go with a friend so it’s also a social experience for me. I missed my weekly trip to the grocery store and had to rethink my menu plan to make sure we were covered. I will have to fit shopping in another day while my husband is at an exercise class and it will be rushed which adds stress to my life instead of taking it away. All of the household tasks our Wednesday helper normally does for me will either have to wait a week or I will have to do them myself, again adding stress. Most importantly, that midweek break that I have come to depend on is gone.

I have tried to express the importance of these activities to everyone working at the agency and will again let them know how disappointed I am at losing their services this week. I know they are struggling to find good Caregivers and understand that they cannot control when folks need a day off. I just want to make sure they understand that it is so much more than just an inconvenience. Perhaps then they will try a little harder to have the support available when we need it.

Even when not actively engaged in care for your loved one, you may find that they are always present in your thoughts.

I think about the Willie Nelson song, “Always on my mind”. My husband is always on my mind, that is to say I am always on alert, listening to make sure all is going well for him. It’s not necessarily a bad thing, but it is also not always a necessary thing. Nor is it a healthy thing for me.

When I am constantly on alert, the stress causes my cortisol levels to rise. Many studies have been done with family caregivers of people with dementia, but I am here to say that the same feelings exist in any person caring for a loved one with a chronic illness. It’s like I am always in a fight or flight mode, waiting for the next disaster to happen. I love those times when my husband takes a nap or sits down to read for a while because I can let go and take a break. I’m able to step into standby mode for a little while which gives my cortisol levels a chance to normalize. And yet I will catch myself looking over to make sure he’s still breathing, how crazy is that?

As a CarePartner, I know I must stay healthy in order to provide the care he needs, but how can I do that when just being here for him may be a threat to my wellbeing? There are techniques for alleviating stress, I know them and need to use them. There are opportunities for me to get away, I must take advantage of them. Finally, I can maintain an awareness of my own feelings and do my best to keep my husband always on my heart, just maybe not always on my mind.

For more information on what cortisol is and how it functions in our bodies check out this article I found on the Cleveland Clinic website entitled simply Cortisol.

Dealing with disappointments can be really challenging for the CarePartner and the Person with Parkinson’s Disease.

According to Google, disappointment is defined as “sadness or displeasure caused by the nonfulfillment of one’s hopes or expectations.” Unfortunately, it comes coupled with anger, frustration, loss, sadness, all feelings I know well as CarePartner for my husband with Parkinson’s Disease. I know he is also facing this to an even greater degree in his daily battles. Everyone will encounter disappointment at some point in their lives, it just seems like we get to do it so much more often these days.

I continued searching my friend Google for advice on how to deal with disappointment and found some helpful information on the Harvard Business Review website. Granted it didn’t have anything to do with being a CarePartner, but the coping skills they shared seemed universal. They say that if I take the time to understand why I am disappointed, then look at what may be possible, I can adjust my expectations to look for a realistic solution that works rather than dwell on what doesn’t. This matches my husband’s approach of focusing on what he can still do rather than what PD tries to tell him he can’t. I like it.

Daily Caring, an on-line resource for Caregivers, doesn’t directly address disappointment but they do have a great article on how to deal with “The 7 Deadly Emotions of Caregiving”. They talk about the importance of acknowledgement and suggest healthy outlets for my difficult emotions. They stress the value of connecting with others and understanding that my feelings are normal. It’s okay for me to be angry, frustrated, resentful, sad, but I must find healthy ways to cope. Disappointment is going to be a part of my journey, I simply need to make sure I don’t waste more thought on it than it deserves.

Find the article from the Harvard Business Review “Dealing with Disappointment, by Manfred F.R. Kets de Vries” here and “The 7 Deadly Emotions of Caregiving: How to Cope” here.

Helping your loved one with decisions about treatments may mean also thinking about the impact any new regime could have on you in your role as CarePartner.

We visited my husband’s neurologist yesterday for his semi-annual check in. While we were there she mentioned a new process for the delivery of medication that should be approved within the next few months. It is a pump in a patch that delivers carbidopa levodopa subcutaneously. The goal is to even out the delivery of the medication into a 24 hour schedule and to make it less work for the patients as they would no longer be taking pills 5 or 6 times a day. My husband has his med schedule on his phone and it seems like alarms are always going off, it would be nice to not have to worry about that anymore. My question for her was, what is the trade off?

The process involves a patch which holds a small amount of the medication, a pump, and microscopic needles that actually are the delivery system. The patches must be changed and relocated every couple of days, and need to be monitored to ensure that they are not causing skin irritation. Some of the test subjects developed infections, or nodules at the injection site. Placement of the patches and watching out for complications would fall to me since my husband has limited ability when it comes to self-care.   

This absolutely sounds like a great break-through for delivery of his medication but is this something we could work with? Currently my husband manages his meds on his own, if we change to this new system it will require a united approach. We need to discuss the possibilities and the ramifications. Is he willing to share control of this component of his journey and how would that look? And, honestly, do I have the capacity and the capability needed to support him in this change? Finally, would it make our lives easier or more complicated? Questions we both need to answer before we meet with his neurologist again.

For more about the studies and the pump itself, check out this article “Continuous Subcutaneous Levodopa Delivery for Parkinson’s Disease: A Randomized Study” on the National institute of Health website.

Sleep deprivation is a common challenge for CarePartners.

I know I didn’t need to say it, but getting a full night’s sleep is one of the biggest challenges I face in caring for my husband. It takes me longer to go to sleep because I can’t let go of the worries of the day. My sleep is disturbed because I am still aware of any noises or movements he makes at night. We get up to take meds or use the bathroom and then my brain won’t let me go back to sleep. The reality is that I sleep less and the sleep I get is less restful which impacts my health overall.

What can I do? GREAT question and there are lots of answers available but do any of them really work? AARP shares 4 tips and their resources for caregivers that I can try. Their suggestions include creating a restful space for yourself to sleep which may be in another room, I don’t want to leave my marital bed to get a good night’s sleep. They suggest setting aside a time each day for worries, but then how do you keep them from creeping back in the middle of the night? I already have a bedtime ritual that is supposed to promote sleep and it works on occasion. Their final idea is to use relaxation techniques to help me transition into a more peaceful state of mind, something that has never helped.

It seems like I am being negative in this blog and that isn’t my intention, I’m just being realistic. One thing that has helped me is talking with fellow CarePartners and knowing I’m not alone in this challenge. Some of them have found success with melatonin supplements, others use cbd drops. I have spoken with my Primary care doctor because she needs to know that I am facing this challenge and has been working to help me eliminate any physical reasons that might be causing insomnia.

I have decided to look at those middle of the night awakenings as opportunities to get up and have some quiet time for myself. A piece of toast and some warm milk, a good book and my cat. I know I’ll pay for it tomorrow, but hopefully there’ll be time for a nap. If not, there’s always tomorrow night and maybe I’ll actually be able to sleep it through.

For more on sleep and caregivers, check out this NIH article “It’s Been a Hard Day’s Night”, Sleep Problems in Caregivers for Older Adults. The AARP article I reference can be found at Tips for Better Sleep While Caregiving.