Caregiving

[livingwith]

My spouse is 48 years old, and is entering into full-blown HD [Huntington’s Disease] stage. The most difficult thing to deal with as her spouse, is accepting and understanding the tremendous neurological and psychological changes she has (as still is) been through.
Home-Care providers generally know very little of HD and often don’t know how to deal with the psychological changes she goes through because of the HD. If the spouse of a HD person isn’t careful and seek counseli...Read the full article

[jonniecrow]

Everyone who has posted here share a common problem. What to do when your spouse's HD gets to the point that self care is no longer a valid choice. I've faced this possibility since 1992 when my wife was officially diagnosed. Testing for HD was just becoming possible and we, note I say we, took the test to know so this information could be passed on to our children. We have a Son, who already had two sons and Daughter at risk and felt we should keep them informed with as much information as possible. Because of the late onset in our family, no one under age 40 had shown signs, so the children hadn't seen what HD looks like.
The disease had taken my wife's father who committed suicide, an Aunt and Uncle who died in rest homes. These deaths were so late in life that our the children didn't realize what really happened. The HD toll has continued with my wife's brother and sister testing positive. We all have children and they have children. The total now stands at 7 at risk children from the offspring of my wife's Father and they have 6 children between them. That's 13 untested at risk children since 1992. None of our children want to test because there isn't anything that works to treat HD directly so time marches on for them. Our two grandson's, one married and one unmarried, haven't had children, know about the HD. Computer searches and conversations with their parents have provided them the possible future they face. Will this end the growing at risk pool? No, I don't think so. My wife's younger brother, showing the most advanced effects of the HD, has three sons. Two have children knowing what the HD possibilities mean and what HD looks like. Our Daughter has two children also knowing what HD is and looks like. Will they stop having children and passing the gene on? No I don't see this happening. The human need to procreate in our youth is greater than any amount of education or counseling. So on and on it goes.
All spouses are also at risk for the role of a HD caregiver. This adds another 13 for a total of 26 at risk now effected by HD in the last 16 years. In the three person group of my wife's siblings all have mid to advanced HD. The cognitive symptoms are the worse for all of the caregiver spouses. One is in and out of the mental health clinics, one is home bound, and one, my wife is moving more and more into the dark hole of HD.
The cognitive problems are the hardest to deal with. The person I grew up with, who I've know since the 8th grade, is slipping away a little at a time. I don't care about the movement, we can deal with that and there is hope with the new Xenazine (tetrabenazine) for the treatment of the chorea, but that person I shared so much with is daily dealing with cognitive problems. The most simple decisions become major events as that ability to decide which action is needed next become next to impossible bringing her to a standstill. I watch a person who worked in the emergency room of major hospitals making life and death decisions not able to pick which dress or shoes to wear, or to shower, comb her hair, or to take her medications. These simple life decisions are nothing compared to watching the chocking on food or falling. Of not remembering if something really happened or is a product of her mind trying to seek order in the jumble of disorder brought on by the HD.
What can I do? I support by helping her do the things that she can, by a nudge in the right direction, by making her choices a shared event. My wife is beautiful, both inside and outside. She never complains or blames. She is so thoughtful and even as my stress presses me down she pulls me back up. Her smile, her touch, haven't changed. Her being and sole is still intact her body is fighting and only gives ground reluctantly. I deal with depression, anger, and remorse at my inability to fix the problem. She consoles me and I put on my happy face and move on. We are a team and it's a team effort. The HD advances and I have looked into the future as far as I can. Will I be able to keep her at home? Will I be able to meet her needs? Will my limitations cause her harm? Will I be able to handle the 24/7 care requirements? One day at a time is all any of us can do. These words were the last words I spoke to my Father as we talked on the day before Christmas eve. I did close the conversation with I love you. Why is this HD related? because he was also a care provider to my Mother as she fought a loosing battle with Cancer. Why were these the last words? His path and lack of the ability to deal with the stress and sorrow of seeing his wife slip away lead him to take his life. Caregivers become victims too. A prolonged battle often ends with two deaths. My wife's Father ended his life when faced with the loss of his wife to disease and his battle with HD, my Father lost his life first by the loss of my sister and then the Cancer that took my Mother. The legacy left to our children is that caregivers die. I deal with this ever day and have taken this as a personal battle to change. If the burden is so great that there seems no way to move on, then death is not the easy way out. It leaves an additional burden for our families. HD is a killer, a consumer of soles, faith, and of beings but we survive. I encourage all caregivers to expand your support net, get help. If professional help is needed swallow what ever pride or shame you carry in seeking assistance. You can't carry this alone. It will get you if you let it. HD is a test and it is a pass or fail for the caregiver, but it's a team effort. Find your team. My team is family, doctors, church, community programs, education, internet, and faith. Find your tem, name them, use them. God Bless and keep you strong. The fight has only begun.