I'm caring for my grandmother. She's 86 years old and has dementia. She's usually a sweet lady but I've been struggling. She has this terrible cycle of not sleeping. She'll some days not sleep for up to three days then crash. Unfortunately sometimes she crashes during the day which is bad for me as I have things I do during the day.
On a side note, my mom has cancer so I became the primary caregiver with grandma's care. Mom was helping for a while, then grandma got shingles so she cannot be near her. So everyday I have to take my mom to get radiation and once a week to get chemo. It's an hour away (it was the best location for oral cancer). We have helpers for grandma that comes everyday so we can do these treatments. Between doctor appointments for both of them, these daily treatments and just daily housework, I'm not able to catch up on missed sleep.
So we spoke to the doctor about it and he said instead of giving her sleeping pills, he thought that would harm her, instead he said sleeping training. I have worked with many kids so I know all about sleep training. We found through trial and error that sometimes when she's up after 3, she will sleep at night. So we started doing this. The problem is she would like to sleep all day long and not at all at night. At night she gets real bored, starts talking, crying out, asking questions, going to the bathroom everytime her pee drops because she just wants to get out of the chair and be 'awake' for the day where as I cannot possibly do that. So I've been trying to wake her up at 3. It's going terribly. She gets so angry when she's woken up. She screams, threatens, calls me names, throws things and even says she'd rather be with anyone other than me. But if I don't keep her awake she doesn't sleep at all during the night and I'm a terrible caregiver. I'm at my wits end. Does anyone have any suggestions or is any else dealing with this? As soon as mom's treatments end, which is in two weeks, I have to think about going back to work. Mom said she will handle care while I work but the nights will still need to be mine as she needs her rest (totally understandable as she's going to be hopefully recovering from cancer and not being able to eat for 3 months). I'm really getting upset by the abuse and the word nursing home keeps being thrown around by everyone (including her although she doesn't want to go. Instead she compares me to the worst people in her mind which is those people.)
I understand dementia is hard on moods. We are lucky to have her so happy go lucky on the days we have her that way. I just wish there was something that to either make it easier on my grandma still allowing me to get some much needed sleep or something that I could convince myself that I'm doing the best for everyone. Help!
Anyone would feel angry, frustrated and emotionally depleted with all that you are doing. Making changes is hard but it's often the only way.
I agree with the comment about the sleep therapy. It's been tried. It didn't work. Melatonin works for some people so that's definitely worth a try, but the doctor needs to take another look at Grandma's sleep issues. With assisted living (maybe a memory center if needed) your grandma would have around the clock people available and this sleep issue would be addressed. Also, you wouldn't be the "bad guy" when you are just trying to help.
I hope that you work on changing this situation before you, too, become ill.
Please keep us updated.
Carol
I have a saying, "anger and depression live in the same apartment"
When I was overwhelmed I tried to consider the care receivers emotional status. Imagine what your loved one is experiencing knowing that the disease is fatal.
I think sometimes you need to step back and view the process as a third party, in order to separate yourself for the turmoil and anger of caregiving. I must admit it takes a long time to shift gears and adjust.
During my wife's illness, she was lucid and alert through her 4-year battle. She confided in the visiting doctor, that she felt guilty and angry because I had to care for her. This is important to remember, the care receiver is experiencing the grief, anger, guilt, anxiety (I call it GAGA) as you are, but magnified many times over.
At one point, it occurred to me that my accumulated anger from past grief experiences were interfering with the present and my anger was misplaced I should be angry at the disease not my wife.
In addition, you are not going to be canonized and awarded for your 24/7/365 service and you need to learn when to let go and ask, accept and arrange (AAA) for outside help.
There is no higher honor than to be a caregiver for someone you love. However, you must learn self-compassion and learn to love yourself and take care of yourself during this challenging time.
I often found myself repeating the three Cs....I didn't Cause it, can't Control it, and can't Cure it .... Do the best you can and know when to let go.
My wife Wendy I have to wake to take to toilet at 3 a.m.
Wendy never ever swore before she got her Dementia and was horrified to hear the F word C word and B word now at 3.00a.m she swears like a trooper
I know it is not my wife and just let her carry on.
Please give yourself a Big Hug and continue
Best Wishes Kevin Parken
there 2x/day to monitor her meals. there wasnt sufficient activities for an 84 yr old so i arranged daily transport to a senior day care for 4hours a day. She was the only resident who left the building daily. it was good exercise and socialization for her at the day care. They had diabetic lunch options and a nurse. There were loads of activities and her favorite 'old school; music was soothing her the whole time. She loved it. It made her want to get up,eat and dress. She had a sense of purpose. After 3months of assisted living,i moved her to a nursing home with a dementia floor. I had visited this place several times;and other facilities. i chose this one because the staff really knew how to deal with the residents. I never saw any residents laying in bed or sitting in wheelchairs--looking miserable. they were generally smiling and upbeat.
I came the first morning after her first night and mom was beaming! She was in the dining hall enjoying the music and tapping her feet. i said;'you look happy.' she said: ' I am VERY happy'. I wished i had found this place first and never put her into assisted living.They didnt have a clue:nor did I,really--as to what to do for quality of life for dementia patients.
The head nurse explained that caregivers and family are frustrated and overwhelmed partly because we want our loved one to 'be in our world and do what We want.' she said that its best to live in their world and understand their wants and needs. The facility had 3 activity levels based on severity of the dementia. ALL residents were involved in something. My mom only live for 2months after--but she was happy. I asked her every day;and she told me every day
Your mother needs her rest. You NEED to go back to work. I cannot see tasking your mom with cancer caring for her mother with dementia. It is the work of three shifts of young, rested caregivers at the stage that grandma is at. Talk to Grandma's doctor about this, and what the options are. Certainly her sleep needs to be regulated by medication if she's at home.
If I were you I would go back to work and let others fill in. If you leave, they will. Save yourself while you still can. When you get too old, no one wants to hire you. You are drowning and she has you in a neck hold pulling you under with her.
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