Dementia Support Group
Dementia is the progressive decline in cognitive function due to damage or disease in the brain beyond what might be expected from normal aging. Particularly affected areas may be memory, attention, language and problem solving, although particularly in the later stages of the condition, affected persons may be disoriented in time, place and person (not knowing who they...
Hello,
I'm new to this group. I'm 59, married, working full time, and raising our grandson who is now 16. My mother had Huntington's Disease and my father and I cared for her at their home for many years until her death three years ago. My brother is 54 and he also has the disease. He is disabled but does quite well and is still able to walk, eat, and communicate.
My father is 84 and began showing memory problems about a year ago. We live near-by, in the country. DH is retired but works part-time, a split shift, about 6 hours a day because it's very expensive raising a teenager. We've been taking care of Dad who was forgetful, occasionally confused, but still in his home and doing okay. I took him breakfast before leaving for work. DH went there about noon to get his lunch and take him wherever he wanted to go (he gave up driving last year). Then to our house, I would cook dinner when I got home from work, he would visit until about 9:00 and we'd take him home.
Our grandson is very active in sports and my dad LOVED going to all his games. He went to every football game, including the State championship game and to every one of his basketball games through the State championship game the third week of March this year. Shortly after that, his confusion and memory problems exploded. and he also began hallucinating DH found him walking around outside saying that his mother called and told him to take money to his grandmother and he was walking to her house but couldn't remember how to get there. He began falling a lot and lost bowel and bladder control - all this in about a two month time period. I begged him to go to the doctor but he refused to go. I talked to social workers and the doctor's office. They all told me there was nothing anyone can do. We could not force him to go to the doctor if he refused because he was not declared incompetent. But, the only way to get him declared incompetent was to get him to go to the doctor. I was in my car in his driveway when they told me that and I sat there and cried.
I finally convinced him to go to the doctor and they ran tests and made an appointment with a Memory Clinic. In the meantime, my brother and his 35-year-old daughter and her 6-year-old son moved in and my neice was taking care of both her dad and my dad for about a week. The Memory Clinic neurologist admitted Dad to the hospital on the 20th for extensive tests. They did not find anything conclusive but he suspects maybe a combination of Lewy Body or Alzheimer's combined with NPH. Tomorrow they are moving Dad to a nursing home for rehabilitation for the 20 days that Medicare will pay for. I have his name on the waiting list for two Memory Care Homes. I hope they will have a room for him by the time his paid nursing home stay is up. Otherwise he might need to go back to his home with my neice caring for him until they have an opening.
This has been quite sudden for me and lot to deal with alone. I'm glad to find a support group.
I'm new to this group. I'm 59, married, working full time, and raising our grandson who is now 16. My mother had Huntington's Disease and my father and I cared for her at their home for many years until her death three years ago. My brother is 54 and he also has the disease. He is disabled but does quite well and is still able to walk, eat, and communicate.
My father is 84 and began showing memory problems about a year ago. We live near-by, in the country. DH is retired but works part-time, a split shift, about 6 hours a day because it's very expensive raising a teenager. We've been taking care of Dad who was forgetful, occasionally confused, but still in his home and doing okay. I took him breakfast before leaving for work. DH went there about noon to get his lunch and take him wherever he wanted to go (he gave up driving last year). Then to our house, I would cook dinner when I got home from work, he would visit until about 9:00 and we'd take him home.
Our grandson is very active in sports and my dad LOVED going to all his games. He went to every football game, including the State championship game and to every one of his basketball games through the State championship game the third week of March this year. Shortly after that, his confusion and memory problems exploded. and he also began hallucinating DH found him walking around outside saying that his mother called and told him to take money to his grandmother and he was walking to her house but couldn't remember how to get there. He began falling a lot and lost bowel and bladder control - all this in about a two month time period. I begged him to go to the doctor but he refused to go. I talked to social workers and the doctor's office. They all told me there was nothing anyone can do. We could not force him to go to the doctor if he refused because he was not declared incompetent. But, the only way to get him declared incompetent was to get him to go to the doctor. I was in my car in his driveway when they told me that and I sat there and cried.
I finally convinced him to go to the doctor and they ran tests and made an appointment with a Memory Clinic. In the meantime, my brother and his 35-year-old daughter and her 6-year-old son moved in and my neice was taking care of both her dad and my dad for about a week. The Memory Clinic neurologist admitted Dad to the hospital on the 20th for extensive tests. They did not find anything conclusive but he suspects maybe a combination of Lewy Body or Alzheimer's combined with NPH. Tomorrow they are moving Dad to a nursing home for rehabilitation for the 20 days that Medicare will pay for. I have his name on the waiting list for two Memory Care Homes. I hope they will have a room for him by the time his paid nursing home stay is up. Otherwise he might need to go back to his home with my neice caring for him until they have an opening.
This has been quite sudden for me and lot to deal with alone. I'm glad to find a support group.
So sorry for your tough situation. You have already been through so much with your mom & Huntington's. A cousin on my husband's side has it so i know it's no picnic.
It sounds to me like you are managing well. You managed to get your dad to the doctor. He can't be living alone anymore and you are in the process of figuring out a new living arrangement. I think you have accomplished quite a lot. Of course this is all overwhelming which may necessitate a good cry once in a while.
My mom deteriorated over a period of about 4 years. My dad has days when he is very confused but in general is better since being placed on Alzheimer's meds & a nutritional powder Axona, he mixes in yogart.
About the choking, if your dad is having trouble swallowing he may need to be seen by a doctor who may prescribe sessions with a speech therapist. He may need throat or facial exercises or treatments.
I hope things go well.
I know how draining all this can be. It's also like you almost need Orientation 101 to understand the disease and how the various nursing homes do things.
Sudden turns can and do happen. My 77 year old husband has vascular dementia brought on by lots of little strokes but last April he had a big one that wiped out his balance, a lot of his memory and a lot of his cognitive abilities overnight. It has also effected his swallowing because the muscles in the throat don't make the food go to the stomach all the time. But he does pretty good with solids. We DO have to have his liquids thickened with "Thicken It" (Available at drug stores) to prevent it going "down the wrong pipe" and causing him to cough A LOT to clear it out. Even when he takes a thickened liquid, he needs to put his chin down on his chest as he swallows to facilitate the liquid going into the right pipe to his stomach and not into his lungs. If too much gets into his lungs he would develop pneumonia so it is very important. He needs his liquids "honey thick" now and I even add thickener to his ice cream because when melted, it turns into liquid. So do be careful about those things. He has been in the nursing home for a year now. I eat lunch with him each day and play Connect Four and Uno with him. Sometimes he needs coaching with that. He is a retired professor. It is very sad.
It is all a long road so be sure to get some rest and have some glad times too. My grandchildren give me opportunities to laugh. My husband is pleasant and still recognizes me and he is not in pain. I am grateful to God that I still have him with me.
Best wishes,
Scamper
Dad is seeing a speech therapist and she told me he's now on 'mechanical soft' foods - one step above pureed.
my mom was diagnosed with full fronto-tempero dementia only a year and 1/2 ago and it is so shocking to me of how fast her disease has progressed. Before she was diagnosed, I just thought she was alittle flighty, annoying and rude but was otherwise a fully functioning 57 year old. Now she is completly incontinent, has very poor balance, is almost catatonic most of the time and can only say 3 words... realy, yes & no. She even gets the yes & no mixed up so you have to ask her if she means "yes for yes, or yes for no".
It's not fair to see my mother slip away right in front of me and so quickly. I can understand what you're going through.
I used to work w/Hospices and I don't know if this will help because I don't know what area you're in but if your in So Cal I highly recomend Hospice Preferred Care. After working w/them for a few years I liked them so much I used them when my own grandmother needed Hospice for her Cancer.
We're in Wisconsin. We had Hospice from Chippewa County for my mother and they were wonderful. If my Dad does get into the Memory Care facility I'm hoping for, he will be in Chippewa County also. If he's still at the nursing home, he will be in Eau Claire County but I've heard Hospice there is equally good.