Many Huntington’s and Juvenile Huntington’s disease families are faced with the possibility of moving their loved one into a facility. This is also a subject I have witnessed caregivers pass judgment upon one another. I can tell you, from experience, it is the most painful decision a caregiver ever has to make. I was hell-bent on keeping my mother in law home. In reality, if it had only been the two of us, I probably could have. Many times, I wanted to march my little self back in and pack her up and bring her home. Why would anyone choose a facility?
Here is a list:
1. Safety. I am not necessarily meaning the HD warriors safety alone. Some very aggressive HD warriors threaten to kill themselves, but also family! Young kids can become targets. Some families cannot afford a sitter and have to work away from home and leaving them alone is not an option, falls, choking, setting the house on fire, suicide.
2. Multiple sick families under one roof. This situation can cause chaos, resentment, depression, neglect, and caregiver burn out. In many cases, having a sick adult, a sick child, non-sick kids, and employment, can create a very unstable environment. HD folks thrive on quiet, focused routines and sometimes that is not possible in a big family. It can also put fear into the minds of at-risk family members watching the different stages all at once.
3. Emotional healing. Yep, I said that. Caregivers are often the ones who get the brunt of irritability, irrationality, verbal, and sometimes physical abuse, from compliance issues with an out of control loved one. Caregiving from afar can heal that scar. It gives patients and caregivers (families) time to appreciate the relationship.
4. The Illness of a caregiver. Sadly, caregivers may end up with cancer, arthritis, depression, diabetes, kidney disease, or heart disease...the list goes one. It then becomes utterly impossible for them to provide care for their HD warriors.
Choosing a home can be daunting. When placing my mother-in-law, I made a million calls and went on tour after tour. There were meetings and more meetings. The first question out of my mouth was. "Do you have experience with HD?" The answer may be yes or no, and the price you may pay is the denial of placement for your loved one with this disease. HD is long... can be volatile. Many people frown upon it. I became quite indignant trying to place Nana because is not their job.
A best-case scenario is finding a facility with an exclusive HD wing. Those are few and far between. Many HD clinics have homes and psych units they use or admit to, so always ask. If the facility is not willing to be educated on HD, run for the hills. The home Nana was in allowed me to educate the nurses and aides. I gave them Jimmy Pollard’s book, "Hurry Up and Wait," and I visited the facility to demonstrated how to feed her. If time, money and health allow you to keep loved ones home, then, of course, do it. If not, and safety, mental health, money, or physical health does not allow it, then hold your head high, search diligently, and place your loved one. I have witnessed many relationships improve and the HD warrior thrive in the stable routine.
Only you can answer the question.