Life With A Parkinson’s Parent

The Start Of My Story

Parkinson’s is a traumatic diagnosis to be hit with.  For my mother it meant a life of body tremors, episodes of stiffening up and being unable to move, mental deterioration, hallucinations, and delusions.

This past winter I returned home from a work trip.  For a day or so I tried to reach my mother but was unable to get a call through.  This wasn’t exactly unusual, but something in my gut felt off.  Instead of going home I drove to her house and found a true mess.  My mother was crying over how I had abandoned her. I did my best to console her, but I could barely recognize the person I had seen just a few days earlier before leaving on my trip.  I learned the neighbors had found her wandering around the yard in a major storm that had hit the area.  A large tree limb had broken off from the trees in front of her house and had landed on her windshield and hood.  The falling limbs had damaged the cable lines running into the house which left her with no TV, internet, or phone service.  She had a cell phone but had seemingly lost the ability to use it.

Her obvious level of confusion and the extreme changes I saw in her personality convinced me that she needed to be seen by a doctor.  For about a year she had been losing words, something extremely concerning to a writer and former teacher.  She had been diagnosed with Parkinson’s and had taking medicine to deal with the physical tremors; however, up until that day I didn’t really understand what was going on with her.  The emergency room checked her over and doctors were concerned that she was having a stroke.  Hours and many tests later the doctors were still undecided if she had indeed had a stroke or not but suggested she would need an MRI which they felt she could wait until her family doctor ordered it.  She was sent home and told to follow up with her family doctor. 

Over the next few days, I took her to follow up with both her family doctor and her neurologist.  I learned both had been telling her she couldn’t continue living alone.  This was the first time I had heard this information as my mother had never shared it with me.  I moved into her house that same day.   My family understood that I needed to ensure her safety while we developed a plan on how to proceed.  Her neurologist wanted her to join a program called Big and Loud which apparently helps patients regain their voice as the disease tends to make one quieter and the program was to help with movement.  The closest program was several hours away and was held four days per week for four weeks.  I was prepared to go to my boss and get his blessing to work from there; however, she wasn’t interested in it.  She had already been through physical therapy and didn’t believe there was any point in doing any of it.  The doctor also reminded her that she should not be driving at all again the first time I had heard this.  I took the key fob to her car, which didn’t go over well.

At her doctor’s visit she mentioned that each time she had been weighed she had dropped ten pounds and that over the past year she had lost over one hundred pounds.  It didn’t take me long to realize that the reason for her extreme weight loss was that she simply wasn’t eating much at all.  I had been taking her shopping regularly and food was simply being thrown out after it expired because it turned out she couldn’t open the packaging.  She had been basically surviving on easy to open things such as cookie packages she could slice open with a knife, peanut butter and jelly, potato chips, and chocolate milk.  She had tried meals on wheels but didn’t like the food.  As I would come to realize Parkinson’s messes with the sense of taste.  Food she used to really enjoy suddenly became inedible to her.

We went shopping and I decided to try to make it easier for her.  We would purchase deli made meals which I would remove the hard to open tops and put them in zip lock bags as they would be easier to open for her.   I figured this would allow her to fix lunch for herself while I was off at work.  Sadly, she found herself unable to open the bags and continued her original diet of junk food.   

I was fortunate that while I had two jobs both were flexible enough that I could work from most anywhere for most tasks and so I began to work from her home.  I made myself an office/bedroom in her loft upstairs and ran my day from there being available to ensure she took her medicine and ate actual food. 

This seemed to help as her cognitive ability seemed to get better and she began to seem more and more like the person I had always known.   I had established a med chart showing all her medicines and charting when and how much needed to be taken.   I posted it on a dry erase board along with names and phone numbers for her to be able to call in the event I wasn’t home.  Her doctor had set her up with visits from nurses several times per week including physical therapists.  I thought things were going fairly smoothly. 

It was easy to see that darker, rainy days would be the most difficult as when the light levels began to drop, she began to sundown.  She would become more confused and at times wonder aloud when she could go back to her home.  I would have to remind her where the bathroom was, where her bed was, and I was constantly having to work the television for her as she used an Amazon Fire Stick to watch TV.

I would often have to hunt for things in the morning as she would get up in the night and hide things.  Her medicine would leave the cabinet, and I would find it in drawers and cupboards.  I would find the TV remote in her shoes and occasionally her glasses as well.   As her diet and medicine schedule stabilized this seemed to stop and it felt like things were getting better. 

That changed when a task came up for work that I could not do from home.  I would have to spend a full day traveling to different business locations and as the day got longer and longer it was getting dark, and I was still many hours from home with two more places still to visit.  I called her to tell her I would likely have to stay in a hotel for the night and come back in the morning.   As we talked something didn’t feel right, but I wrote that off to her sundowning.    She had assured me she had eaten and had taken her medicine for the evening.  She told me she didn’t want me to risk myself on the roads getting home so late.  I completed my rounds and drove home only to find she had transformed into a personality I had never seen before.  She was clearly angry at me and told me to leave that she couldn’t trust me.  All I would get out of her was that I had treated her so badly last night and that day.   That scared her by being so angry at her.  I was at a complete loss as I had no idea what had happened.  I couldn’t remember being angry and I had spoken to her on the phone several times during the day and everything seemed fine.  

I learned later she had been convinced I was home the entire time and that I would wander into the living area around her just glowering at her but never speaking.   She had experienced a hallucination and was convinced it was really me.  While she hallucinated before it had always been essentially faceless shadows sitting in chairs around the room that never spoke to her.  She had never been afraid of them, so they never really bothered her.  This was different.  She had been unshakable in her belief that I was dangerous and had gone to the neighbors to call the police who had apparently searched for me in the house and decided I had already left.  I left the house as she wanted and went home with no idea what to do about it.  I had most of my belongings in her house.    After a long night of barely sleeping, she called me around six am to tell me she had made a terrible mistake.  I picked her up and took her to her doctor’s and made them aware of what had been happening.  The doctor set us up with the in-house social worker who gave me forms for medical power of attorney.  We completed them with her, and she called in two random people from the waiting room to witness the signing. 

We left with copies of the medical POA, and I felt a bit better but knew there was more to be done.  Things seemed to go back to normal for the next few months.  Once again, I had to go out on the road to do my job and I was gone for around eleven hours.  It was my fiftieth birthday and while I had planned to stay home and celebrate issues had come up at work and I had to go deal with them.    My co-workers who had learned it was my birthday on social media expressed their well wishes and gave me silly presents such as a set of Yoda ears as they know I’m a nerd who loves Star Wars.   I arrived home wearing my silly ears and carrying in my bags when I ran into the darkest version of my mother I had ever seen.  She ordered me out, swore at me, and said a lot of extremely hurtful things.  I didn’t want to escalate things, so I decided it was best I go back to my house for the night.  I gathered up what I needed while she went to the neighbors again to call the police to come get me.  She continued to spew hurtful things at me while refusing to tell me anything about what had happened.

After I got home, I was lying in bed when my phone went off and my cousin from across the country was calling me.  Apparently, the state police had reached out to my aunt asking her if she could come take care of my mother.  She had then called my other aunt and ended up telling my cousin instead who called to support me.  Thankfully they all knew I wasn’t doing anything to my mom; however, the police had no idea. 

The following day I called her doctors and the home health therapist who was going to visit her that day.  The nurse called me after meeting with her despite having called my mother the night before and being told to stay away and never call again.  She told me that my mother was still in a delusional state and gave her a story about how a man she was dating named Chris had come over with his girlfriend and robbed her and trashed her house.  Files and papers were all over the place but after walking through the home with the nurse she decided not much was gone.

Once again, I spoke to the staff of her doctors.   They all agreed she needed to be in the emergency room but left it to me to get her there.  As I drove to her house, I got a call from a sheriff’s deputy who had just been on the phone with her as she had called the police again on me.  I explained what was going on and that her doctors wanted her in the emergency room to be evaluated as neither of them could fit her in that day.    The officer told me not to escalate anything and that if she wouldn’t go with me that I should go out to my car, drive down the road and call dispatch for an ambulance and if they needed help, they could call in police to help. 

I entered the house, and she was still in a delusional state but seemed to be close to coming out of it.  She kept trying to talk to the police officer who had called me but of course that call had long ended but she was convinced he was still on the phone.    After about an hour I managed to talk her into going to the hospital with me, all the time telling me she wishes she could trust someone.

Doctors examined her looking for infections as even a small infection can cause major flare ups with Parkinson’s.  They didn’t find any sign of infection or injury and sent her home to follow up with her family doctor.  By this time, she could barely remember anything about what had happened, and life went on as usual for her.

Each doctor’s appointment that followed became a nightmare to her as in her eyes, doctors ignored her to talk to me.  No amount of reassurance from the doctors to her was retained, only the idea that she was losing control over her life and that she was somehow not being treated as a human being.  It was heartbreaking as she would talk about how her life is over and how horribly she is being treated. 

The nurses would ask her questions to establish her cognitive levels, and her answers were usually off the mark.  If asked who I was she would often not have an answer or she would say I was her husband.  Other times she would think I was someone she was in a relationship with who was dependent on her.  Each time I would try to talk to her about completing the paperwork for designating power of attorney she would resist and say she wasn’t sure she could trust me as we had just gotten too dependent on each other.

I have read several articles about how to handle caring for a family member with this terrible disease.  I saw advice such as don’t stop living your own life.   In my case my life has pretty much always been my work.  As an introvert my social circle has pretty much never really existed outside of work colleagues.  It had never been an issue for me until now.  My own family had traveled to Missouri for several months and even if they had been home there wouldn’t have been much more than sympathetic before going back to their own things. 

You may be asking yourself what should I do if I find myself living with a Parkinson’s parent?

1. Do your research and learn as much as possible about what you’re dealing with; however, understand that no amount of research is going to give you a really satisfying answer.  It can prepare you to know what might be coming your way in terms of behavior and symptoms and that is important.  Understand there is no cure for Parkinson’s.  All the treatments available come down to a doctor’s guesswork on what is best through experimentation and sometimes the side effects are as bad or worse than the disease. 
2. Don’t be passively involved, be actively involved.  In my own experience I have seen doctors disagree on the diagnosis and how to proceed so get more than one opinion and be ready to be as much of an advocate for your family member as possible.  Remember you are just as much a part of this treatment plan as the doctor.  Look up the medications they are prescribing and know what they do and what are the likely side effects.   Ask questions such as when is the best time for the medications to be given?  While pharmacy instructions will say how often to take the medications, they don’t always give you time and some medications given at certain times can be more effective than others.  I was several months in before I finally had a neurologist tell me her medication should be given before bed.  Nothing in the patient instructions said anything about that.
3. Keep a journal noting your own observations.  Make note of symptoms and behavioral changes.  Write down questions that come to your mind or that are brought up by a family member and review these notes before seeing a doctor.  Doctors are dealing with a lot of patients and in their rush to see them all it is easy for questions to be forgotten or symptoms and behaviors to be unreported which might help the doctor with the treatment plan.
4. Establish a power of attorney plan as soon as possible.  Understand, this can come with many different facets ranging from just medical POA to full guardianship which gives you or a designated guardian control over finances, facility placement, etc.  Work with your family member to know who they want making decisions for them when the time comes, and it will come.  Be aware that your family member may not be fully cognizant, requiring you to make decisions and start things in motion that take control out of their hands.  It isn’t easy taking away the rights of your family member to make their own decisions; however, it may have to be done.  As part of this contact banks, doctors’ offices, and any other groups your family member works with to ensure your name is one they are allowed to talk to so you’re ready to step in at a moment’s notice.
5. Have a medicine chart or list that is constantly updated as changes are made by doctors.  Ensure that all providers have exactly the same list to prevent medications from having negative interactions.  Post or share this list with others who may be sharing responsibility for caring for the individual.  Remember consistency is extremely important.
6. Establish schedules.  Structure is just as important for an adult being cared for as it is for children.   Keep mealtimes and medicine times routine to avoid confusion.   Using tools such as Google calendar which is shared between all involved with the day-to-day care of the individual to keep track of appointments.  Establish one person as a point of contact to keep the schedules.  Doctors’ offices will usually try to talk directly to the patient and that is understandable; however, if your loved one is in cognitive decline, it is too easy for appointments to be missed as they may forget the doctor, date, and time by the time they hang up.
7. Establish a long-term plan.  As soon as possible it is good to visit and evaluate assisted living communities and nursing homes.  The sooner your family members see these facilities and can give you feedback on where they would want to, or at least be willing to, live.    Using online services which helps find these facilities can be helpful, just keep in mind at the end of the day they are looking to get a commission from whatever facility you pick so you still need to do your own research to find all the options. 
8. Build a network.  Have a support system for yourself.  I get that introverts especially tend to not have one; however, force yourself to build one.   Everyone needs someone to talk to, especially if they are the sole caregiver.  Find someone you can talk to even if it takes you out of your comfort zone.  Doctors, churches, local social service groups, and even information available online can help you find people who can help you.  Nurses coming in to do health checks or physical therapy may only be there for an hour but that can be an hour you don’t have to be there, or you may be able to do something for yourself.  
9. Protect yourself.  Make sure what happens in your home isn’t a closely guarded secret.  It can feel like you have to protect the family members’ privacy or situations which may be embarrassing may come up.  Be transparent about what is going on.  Having home health staff visiting, social workers, friends, etc. showing up and knowing the situation can help you if in a delusional state your family member decides to file a complaint.  Having POA helps but witnesses help more.  Keep doctors in the loop and be ready to let officials know to talk to them if something happens.
10. Don’t give up.  Caring for a family member who may have raised you can be a tough job.  Watching them change from the strong caring person you knew as a child to being a weak, confused, frightened person needing your protection can give you reason to despair.  Remember who they were and understand that it is your turn to be there for them as they were for you.    Don’t let personality and situational changes damage the memories you have of that person.  It isn’t their fault, they didn’t ask to have this disease, and they likely wouldn’t want you to have to go through it with them.  Take joy in the little things, don’t lose yourself, and most importantly don’t corrupt the good memories you have.