Caregiver Corner – Beth

1. What is your relationship to HPP?

My husband was diagnosed with hypophosphatasia (HPP). He was frustrated because he knew there was something more to how he was feeling. After extensive and exhausting research and DNA/Genetic testing, he was officially diagnosed. 

2. Who do you support?

First, I do not consider myself a “caregiver”. I may not have been “diagnosed” with HPP; however, my husband and I have been married for 37 years. Therefore, we are partners in this maze.

3. What has been the most rewarding aspect of being a caregiver?

There are some positives. I do believe we are closer as a married couple. Our communication and trust with each other is stronger compared to most married couples I know. 

4. What has been your biggest challenge as a caregiver? 

The biggest challenge is knowing when to walk away for five minutes just to get centered. Living and loving someone with HPP is not always easy. It can sometimes be stressful and exhausting. 

It can be especially stressful and exhausting when there is an onset of joint or muscle inflammation that is so painful, you cannot relieve their pain. All you can do is end up with them in the emergency room at midnight. Sometimes they are unsteady while walking, have fallen, or have difficulty getting in or out of the chair.  This unsteadiness can lead to some anxiety or depression. Now you are both an emotional and physical aide.

5. How do you practice self-care? What resources do you find helpful?

There are two things I do just for myself for self-care. This is when I have “my time”. One is every morning, while my husband is still asleep, I get up, have my coffee, and then get on the treadmill with a virtual treadmill video and my playlist.

The second is to be social outside of my caregiving. You need to be selfish and focus on yourself for at least one hour a week. 

If anyone would ask me, I would tell them to find a club or group hobby that gets them away from the house, their caregiving duties, and in the company of other people for at least one hour a week. You would be surprised how that hour or two can regenerate you.

Mine is my weekly workshop with Weight Watchers. The members in my weekly workshop have become close friends. Often, we go out after the workshop for coffee. It is an outlet where I can relax and just enjoy general conversation.

6. Do you have any tips for other caregivers? 

There are two resources I find helpful. First, I try to go with Scott to his doctor’s appointments. It is important for us. With all the information that is thrown at you during your doctor’s visits, you are bound to miss something. It is always good to have a second person with you to make sure you are going home completely informed. Second, would be the HPP meetings and support groups. Over the years, the members have also become my friends. I enjoy going to the regional and national meetings. I can honestly say I am always learning something from them.