A common theme in online support groups is caregivers feeling overwhelmed. Many admit to constant crying, feeling lonely and feeling isolated. I noticed self-esteem seems to also go down the drain, with little or no time for personal care and wellness and the barrage of verbal abuse (yes, that is what I said) from an irritable HD/JHD loved one.
It would seem that these issues would have been addressed earlier, even though it truly has evolved thanks to social media, but it is still a problem.
Contributing factors include:
1. Lack of finances or coverage
2. Lack of education and understanding of the illness
3. Lack of family support.
4. Outside world gets bored with such a prolonged trauma, making caregivers appear as those with "Victim Mentality."
5. Denial on the HD patient's part.
6. Non-compliance in an aggressive HD loved one, and at-risk family members.
7. TOTAL inexperience of medical professionals in rural areas.
8. Caregiver: feeling guilty about leaving or getting out alone.
So, how do we solve this issue and close the gap? It used to be that the only organization was the HDSA. Now we have Help 4 HD International, WeHaveAFace.org Global HUBS, WeHaveAVoice Radio, Help4HD LIVE Radio, HSG, plus numerous online support groups. The list is getting longer, thanks to people refusing to be in the HD/JHD closet. They understand how crippling this disease really is! This is a start.
We close the gap by letting go. We close the gap by getting out and reaching out - we must continue talking. One thing that I do, and it may seem so small, but I try to meet other caregivers in person. If I am going to be in your area or you live near me, chances are we have met face to face at least once. It might be for coffee, a walk, lunch, breakfast, or dinner. I do this - to physically hug another caregiver, because let me tell you, there is so much bonding in that hug. I also make phone calls to online HD caregivers who just need to hear a voice of another caregiver. I share my woes as well. I might private message someone who needs lifting up. I might send flowers, money, a card, a book, a bracelet. I can not always do this because HD fills many corners of my personal life. However, I do it to close the gap, to feel less overwhelmed.
I do want to warn you though; I tried to run the local support group at the wrong time in my HD journey. I did some neat things, I did a meeting on driving, had a genetic counselor visit. I had Katie Moser speak on abuse and testing and family planning. But at that time I was literally grasping for straws myself. My family life had been turned upside down. I was barely holding my own family together and was trying to hold all the other HD families together...and then I went to a therapist. I passed the torch to someone else. I began to take care of me. Healthy me equals healthy caregiving.
It is ok to let go of some things. I encourage you to find a COE (Center of Excellence) if possible and, a good social worker who will really help you. See a therapist who has experience with HD, if you can. If no one in your area knows HD, ask if you can give them a book on it and ask if they would be willing to advocate with you.
Adult day care and pediatric daycare can be vital. If you have no one, educate a close friend or church member and have them help you. Even if for an hour or two, get a manicure or go for a walk or out with friends. Also, read books, go to conferences and join groups. One of the best things I did when my MIL lived with us, was hire my own mom to care for her while I worked. She got to see first hand the stress of having my ex-husband and his mom under one roof, and she lightened my load. She helped with laundry, meals, medications, house cleaning, and sometimes had made dinner or snacks by the time I got home. It was a time for her to learn about this disease and really understand the challenge.
Now, I want to address those of you caregivers who have the need to be the super perfect, superhero. Don't do it. It is not humanly possible, and you will cause yourself to burn out quicker than anyone else. Caregiver suicide and death before their loved one is very real. I was a caregiver who thought non-stop about suicide. I felt trapped, isolated and neglected. I was trying to be perfect. I was trying to hold every piece in place. I was trying too hard. I was falling apart. Then I began to set boundaries. I made huge changes in our family life. I began to heal and to reclaim me as a person. I got stronger. I became more knowledgeable. I grew confident. I started to help other caregivers. IT all began with letting go. I think we all know the "Frozen" song? "Let it go. Let it go".
"You can tell a lot about a person by how they treat the very young and the very old."