Caregiving for my mother who has Huntington’s disease

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Kelsey Giboney, Colorado

I began caregiving for my mother who has Huntington's disease about 2.5 years ago. She had a very serious fall in 2013 and after being hospitalized for a few days her neurologist required her to have 24 hour care. I lived about an hour away from her so I decided I would come down and help with her care to cut down on cost. We handled the scheduling and payment of her caregivers while she lived down in Denver. We moved her into an assisted living facility literally directly behind my fiancée’s mother’s home where me and my fiancée lived. I visited her daily and would talk to her at least 4-10 times a day. (She would call me repeatedly over and over sometimes.) 

After being at the facility for a few months she was kicked out due to her behavior (arguing, broken window, etc.). We were left in a really sticky situation so we started to look for another facility that could take her. We were unsuccessful so we began looking for a house to buy where I would just be her full-time caregiver. We found a place and moved in and I have been taking care of my mom mostly by myself since.

At the beginning things were good; I had energy and was happy to be caregiving for my mother. Things slowly began to get worse due to her inability to think of anybody else. I was in college with a 3.8 GPA before I started to take care of my mother. Due to her behavior problems I have dropped down to a 3.0 because she will not allow me to sit down and do anything that’s not geared toward her. It is hard to describe some of the behavior problems my mother displayed but I will attempt to explain to the best of my ability.

Some of my mother’s behavior problems include excessively asking for things to the point it becomes frustrating as a caregiver. She won’t even let you sit for 30 seconds sometimes, impatience, requesting to go places now repeatedly and if told no she will threaten to take me off P.O.A. Waking up the whole house by yelling at the top of her lungs at 6:30 am because she wants a cigarette, threatening to remove me as P.O.A. because I won’t give her a cigarette because she literally had one 30 seconds ago. She threatens to call her attorney on me because I tell her it’s not a good idea to send my brother a large amount of money for no reason. I cook at least three meals a day plus two snacks, I clean, I do laundry, I take care of my autistic son, and go to college. I worked for two years with not one day off because I could not find any help. We were denied by her insurance to get an in home CNA. Meals on Wheels said they could not cater to her soft diet, and we were denied by many respite care facilities.

For almost four months straight my mom would threaten to take me and my fiancée off the house deed because she would get randomly mad over something. My brother was helping to take care of my mom before I did, but he got frustrated and moved to California with his wife. His wife has cussed my mom out many times and I am not too fond of her. He does not call to check up on my mom and the only time he cares to call or anything is when she offers to give him money. My mother randomly will get anxious and start accusing me or my fiancée of trying to take the house from her even though we pay 50/50 on bills between the three of us. I do not pay myself what I should be making so my mother can have extra money to do some of the things she likes but it feels like a slap in the face every day when she accuses me of things and does not care about my well being. I am a type 1 diabetic since age two and even when my blood sugar is low and I tell my mom to wait while I fix my blood sugar she will get anxious and say “Do you not want to get paid?”

I almost feel completely hopeless these days. I am not taking care of my diabetes and I am physically and mentally exhausted. Every single day I know I will have to deal with my mom accusing or trying to start a argument over nothing. I have been attacked by my mother as well.

 

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