Putting Yourself First

Today, I want to talk to the caregivers. I want to talk to you about the importance of taking care of yourself. Mentally, physically and emotionally. 

The last three years have been a lot. I’ve detailed some of it in previous blogs. 

The last 12 months have probably been even more stressful than anything I have had to deal with before.

Here is a very high level view:

September 11, 2022 Grandma who had COPD and COVID pneumonia was moved to hospice while Robert and were on vacation in Hawaii

September 18, 2022 Grandma passed away

September 23, 2022 We bury grandma and I develop a tear on my retina

September 26, 2022 I have my retina repaired with a laser 

September 28, 2022 Robert had a bone marrow biopsy because of his low platelet count

October 2, 2022 Mom (stepmom) has hip replacement surgery

October 8, 2022 Mom has a heart attack

October 10, 2022 Mom has open heart surgery to repair three blockages and remove a cyst between her heart and lungs. 

Weekends between October 16 and October 29 are spent in the continuing care facility with her so she was not alone because the staff there left a lot to be desired and none of us were comfortable not having someone there with her the whole time. Normal PT for her hip was hindered by her recovery from the heart surgery and PT for the heart was thwarted by her hip recovery. 

In March, Robert was involved in a car accident and our car was temporarily "lost" between when the tow company picked it up and when it made it to the repair place a week later. Then, a couple of things that should have been repaired were not and we had to take it back.

We had the "joy"of learning all the ins and outs of the many different aspects of Medicare so Robert can be covered. 

My job that I truly love has been frustrating me for a variety of reasons. 

In July, Robert had his fall that resulted in staples in his head and the hospital stay as well as more doctors and more appointments. 

We had to replace our A/C during one of the hottest summers on record in Texas. We literally hit 102 this past Sunday if that give you any indication how bad it has been. Then, about two weeks later, we had to replace a dishwasher that broke and have a fridge that will probably need to be replaced in the next year or so. 

A couple weeks ago, my mother (birth mom) found a lump during her yearly mammogram. Both of her older sisters are already survivors of breast cancer. She has had a biopsy and we are waiting for results of that. Initial reaction from the biopsy is that it doesn't look good. 

There has also been some turmoil going on in the lives of some dear friends of ours that is affecting us emotionally in the last few weeks. 

Finally, if all of this was not enough, the medication that I have been on for over 11 years for my ankylosing spondylitis (think Rheumatoid Arthritis on steroids) has become less effective so my pain levels have increased dramatically. Almost a year later and we still haven't figured out a new solution that is effective at reducing my pain levels to the manageable levels I was at before the previous medication began to lose it effectiveness. The stress of all the above doesn't help that either. 

All of this to say that I am struggling. Mentally, physically and emotionally. But I haven't said anything to anybody because I don't to be a bother. I keep things from Robert because I don't want to stress him out. That makes his anxiety act up, which makes him depressed and can temporarily exaggerate his HD symptoms. 

But I can't do that anymore. If I am going to take care of him, I have to take care of myself as well. So, I have taken a big step. I have reached out for therapy and am going to start talking to someone about me and all of the stuff I have been keeping bottled in of late.

Most caregivers can probably relate to this. So much of our time and energy is spent taking care of someone else. We put there needs first. Our well-being is often put on the back burner. But sometimes, we have to put ourselves first. Sometimes, we have to be a bit selfish. It's the oxygen mask principle. "Put your mask on first, BEFORE helping others." 

Let this serve as a reminder that it is okay to take a little "me" time once in a while. To be the best caregiver, you have to be at your best. If you need help, ask for it. If you need to talk to a therapist, talk to a therapist. If you need to take medication to help with depression or anxiety, ask for it. It is okay to not be okay. Take the healthy steps you need to in order to be a better caregiver. 

The Importance of Following Up with Doctors

This post contains some images that might make some squeamish. Proceed at your own risk. 

Remember that time I shared that post about Robert passing out and having to go to the ER (The Vagus Nerve Issue). 

Well, it happened again. But this time he must have hit his head on the entertainment center on the way down because he sliced his head open. 

And got three staples. 

This time there was also a microscopic bleed on his brain.

At first, it was no big deal. The doctor sent us home and said to monitor it. If he started having problems, go back to the ER. Follow up with the neurosurgeon in a couple weeks and come back to have the staples removed in about a week. Sounded like a really good plan. 

If only it ended there…

We had been home for about an hour and a half when the hospital called. They got to looking at his labs and realized his platelet count was really low. The brain bleed was now a concern because of his ITP. So, we had to come back to the ER so they could monitor him for a while, do some more CT scans and give him a platelet transfusion. 

So, back to the hospital we went. 

All this to say this whole issue started because of his low heart rate issue. We had seen a cardiologist about it last year and they were to follow up with us when they had test results. We never did hear back and we let life get in the way. That might have been a mistake. I should have pushed more, followed up on those results, and ensured we saw the doctor. It might have prevented this whole episode this time. 

As a caregiver, sometimes we have to advocate for the person we are caring for. We sometimes have to follow up with doctors and make sure appointments are made and results are provided. A caregiver’s life is hard and stressful, but I would rather deal with the stress by being an advocate to help prevent events like the last 24 hours from happening versus the stress we have endured the last 24 hours. 

And, I have already contacted the cardiologist and scheduled an appointment for next month to find out all those results. 

The Next Milestone on the Disability Front

We have reached that magical two-year mark, meaning Robert is now eligible for Medicare.

What you ask?

When you are approved for disability because of Huntington's Disease, after two years you are automatically enrolled in Medicare. Since his official start date for disability was June 1, 2021, that means Medicare kicks in on June 1, 2023. Automatically. There is no waiving or opting out. It will happen whether we want it to or not. Plus, they automatically deduct the cost of it from his check each month. Not to mention, Medicare is honestly better than the insurance I have through my employer. So, it's a no-brainer that we will take advantage of it. 

The real difficulty comes when deciding if you want supplemental insurance and which one to pick 

Do you need supplemental insurance? No, but also yes. 

Supplemental insurance or Medigap as it is often referred to is additional coverage to help with the cost of things like doctor appointments and other unexpected out of pocket expenses. You can also choose options that provide extras like dental and vision coverage. Some even provide things like transportation to appointments and help with over the counter medicine costs. You do not have to have it but you probably want it because it will save you money in the long run. 

So, how do you decide?

Fortunately, Medicare is generous enough to send you a booklet that lays out all the many options available to you.

The one that Robert got is only 130 pages (sarcasm font).  

It actually contains a lot of useful information. It talks about all the many things that Medicare covers, the cost of them and what is not covered. 

You can choose from an HMO, a PPO, a Private Fee for Service plan and Medical Savings accounts. It depends on your preference for the services. Some plans have an additional premium besides what you pay for Medicare. Some do not. Some have higher doctor co-pays and deductibles that have to be met before they will kick in. Some have higher out-of-pocket maximums than others. Again, it all depends on what things are most important to you. 

Once you have made up your mind about which type of plan you want, it offers pages and pages of all the different insurance companies you can choose from and what type of coverage they provide.  Or, if you are like me, you can visit the Medicare website to compare the many plans available. 

Honestly, it is a lot of information. It is not the easiest thing to understand. We were fortunate enough to have a friend who helped us make sense of a lot of it. 

Hopefully, we made the right choice. If not, it's okay because each year from late October to early December, they have open enrollment so we can change to a different supplemental program. 

One Doctor Appointment Leads to Another

It’s been an interesting few months since that trip to the ER when Robert thought it would be fun to just randomly pass out. While he hasn’t had any issues where he actually passes out, he has had several times where he gets light-headed when he stands up. 

We recently had his quarterly check-in with his neurologist and mentioned what happened. It’s a partial brain thing so we wanted her to know. She didn’t think it was HD related, but a circulatory thing. She checked his blood pressure and it was 102/78. Then she had him stand up and it dropped to 98/72. Yes, the numbers are correct. That’s low! She told us that was most likely the cause of the Vagal Nerve episode. Her advice was to go back to our PCP and have some tests done to figure things out.

That led to blood work and more doctor appointments. 

First the cardiologist. He said something interesting. There is a connection between HD and your heart. Some new studies are showing that HD can impact the way the circulatory system works. I was not surprised. In my mind this makes sense. HD affects the brain so it stands to reason that it could impact any one of the systems that operate in your body. So maybe they are connected. 

The doctor gave him medication to help raise his blood pressure and put him on a heart monitor for a week. I keep joking that I am now married to IronMan. For a week, anyway. 

The second thing it revealed - or reminded us about - was his low platelet count. It has been a few years since I talked about that but you can see it on some previous blogs from May and June 2016. This is not a new thing. However, it concerned the doctors so they wanted us to go see an oncologist for further testing. 

Fortunately, she was not overly concerned by it. She says that yes his count is low by what is determined to be "normal standards" but not a huge concern. She too ordered some more tests and blood work to further assess what is going on. 

Now, we wait for test results and determine the next steps. 

One thing this experience has taught us is that we need to be vigilant in all areas of Robert's health. While it may seem like an insignificant thing and maybe not related to HD, there is still a chance that it is. It is still important to tell the doctors all the info and report anything that does not appear normal. They might be related to your current condition, but they might not be. It might be something new, but it might not be. Or, it could be something new. You won't know until you talk to the doctor about it. 

An Ode to Bill

On the same day that Robert had his Vagus Nerve episode, his brother Bill also finally succumbed to this horrible, awful disease that is Huntington's Disease at the age of 57.

His passing comes with many mixed emotions for the family. There is a lot of bad blood between him and other family members for a number of different reasons. Bill was never the easiest person to get along with. He could be a very mean and combative guy. And that was before HD even started to affect him. 

From previous blogs, you may remember that he lived with us for a time, too. It was hard. He was not an easy guy to live with on his best days. It was very hard on Robert, too. He struggled with his feelings of anger over the things that went on when they were children and his servant heart that made him want to take care of everybody. It was not easy. 

In the end. the youngest brother Kevin took him in and let him live with them for quite some time. Once it became difficult for Kevin to adequately care for him, with Bill's blessing he was moved to a nursing home to be cared for. In December of last year, when he fell and broke his hip, the decision was made to move him to hospice. He was in no condition to withstand the surgery and rehab. Instead, they did their best to make him comfortable and as pain-free as possible until the end. 

But in the end, the passing was peaceful. The nurses at the hospice center took him out on the deck and let him watch the birds chirping away while they stayed with him. He was able to pass peacefully and not alone. And, he is finally free from the disease that ravaged his body for so many years. As Robert said at one point, he is now in Heaven dancing with their mom to Elvis music.

Over the weekend, Robert and I made the 1,000+ mile journey to North Carolina to be a part of his memorial service after he had been cremated. In the words of Kevin, the plan was to spend the day doing all the things Bill loved to do - eating, smoking, stealing people's stuff and fighting each other. We did some of that. We ate and some people smoked and the guys all played football and badminton instead of fighting each other. Some fighting and stealing were done but in a joking and loving way. We think Bill would have been happy to see it all. 

We also spent some time reminiscing about Bill and forgiveness and the hope that he realized everybody there and forgiven him for the things that went on when they were children. It was these memories that made everyone come to the realization that Bill took the brunt of the abuse they suffered from their father. He would often stand between their dad and whoever he was going after at that time. So, it is understandable that he was a bit angry and bitter. He did have a hard life. 

He is at peace now. His body is free from this awful disease that has already claimed his mom and is impacting the lives of other family members around us. That's all anybody can ask for.

In the words of the song by Vince Gill - "Go rest high on that mountain,  Son, your work on earth is done"