I’m 36 taking care of my 66 yr old mother that has EOA. She literally shuts down and stops talking to me and locks herself in her room away from me. It’s still early in this disease and I’m dealing with it all alone. Any suggestions? I have my days where I can walk away but some days it really provokes me by being accused.
SO hard to go see them. I've had my client/friend for 2 years now, and one before her for 2 years (the second year both of them AND my mom, though she wasn't showing the dementia behaviors then). Even though I don't live with any of them now, am getting pretty burned out, and come home from visiting both of them 2X a week pretty fried (my husband says). We live several miles out of town, so it works out best for me to see them the same days, but oh boy, it ain't easy! One is misplacing everything and saying it's been stolen (I usually find it on the floor of the closet or something); the other can't remember people I talk about that she's known forever, having trouble paying bills, etc, but won't let me help (my mom, of course; client would let me help if she needed it). So hard to have a conversation with them, and I never know what to believe; mom says she fell 8 times since the first of the year; told husband 9; I had thought 2.... Last week she said she had another bowel accident (previous one trailed through the apt to the bathroom); now she says she hasn't had one in 3 mos... that kind of stuff. Got her to apply for Medicaid and when the reply came, she didn't tell me, and threw away the letter - aaargh! I'm trying to stay with my client (99 years old) to the end, but don't know.... Does anyone know the next step after a medicaid turndown in SD, other than elder attorney (no money for that)?
Please try to get mom into senior activities, daycare, day trips whatever is available in your area. This will give you much needed time for you to get your balance and to be able to find the humor in all this. It's not funny but you will feel better dealing from a sense of humor and not dread.
"Yep mom, I stole it. I'm starting a new career as a cat burglar and practicing on you. Oops, I can't remember where I hid the goods, can you help me look?" "Did you notice at what age I developed glue on my fingers, I touch it and it sticks. Could it be hereditary? Mom tell me, do we have a family secret?"
There is no way to predict her response but you can control yours, getting provoked only makes you feel bad when the dust settles, I know BTDT (been there, done that). I can deal with others soooooooo much easier then my parents doing the same thing. I have learned to pity them, which helps me not get upset with them. I also have really silly conversations with myself while dealing with their brokenness. I also keep my boundaries, regardless of what they are going through. My life is not theirs, they had their time and now it is my turn. No guilt, they are safe, cared for and that's about all I can worry about. If they want happiness, joy or peace that comes from within. My dad is happy and my mom is happy only when she's miserable and she is joyous if she can make others miserable.
Don't be to hard on yourself, forgive yourself and find ways to be kind to yourself. Be realistic in what kind of care she needs, a facility may be what she needs, whether she wants to or not is beside the point. You are important and you deserve to have a life separate from her.
Not everyone feels comfortable in groups, so a book that helped me was "The 36-Hour Day." That book became my bible and there were so many behaviors that my mom was doing that were in the book and suggestions on how to deal with those behaviors that were very helpful.
I just did a Walk to End Alzheimer's yesterday in Long Beach, California in the rain. I had a team of 6 people and there were about 149 teams registered for this walk and tons of people were there, in the rain, walking in honor of their loved ones. You are not alone--you just have to reach out like you did on this forum and see the many people who are sharing the same experience. God Bless you and your mom.
There is a lot of good advice here. One thing that has been mentioned is the losing of items, this is another frustrating stage. I took the important cards from moms wallet and color copied them, then had them laminated for her wallet. Meanwhile, I kept the cards in a safe place incase her wallet goes permanently missing. Also, I could see that it was time to approach the subject of becoming joint on her chequing acct., so that I can help her out with paying the bills etc etc... She dug her heels in for about a year, then it was apparent that it had to be done. The lady at the bank was wonderful and respectful of moms apprehensiveness.
It really does take a village to help out, if you are doing it all on your own, you may burn out and then become sick yourself. My suggestion is to seek outside help, and go to a Alz drop in group to feel like part of a community rather than on an island with this terrible disease.
Thank you AgingCare for having this website.
avoid all stressful TV. Avoid all news. And go to the park which works wonders. That's all I got.
I moved my mother close to me into a Retirement home, so I could go to the Drs. with her. I privately let the Dr. know all that was happening and she was put back on antidepressants. The right dose calmed her so she wasn’t stressed and agitated. It can calm so many symptoms of dementia. Please try doing this for you and your mother. There is help and too many think they just have to suffer through it. It won’t fix her, but it will help a lot and you will be able to breath again!
God bless you!
You are among understanding friends here; but if you do a little research you will also find people to connect with in your area, and you will find a lot of information at alz.org to help you understand what is going on in your mother's poor head.
She is fearful, and you are there. Those are the causes of her lashing out at you. Please, please do not take literally anything that she says.
I’ve been told by many experts to go into his world and let him believe what he wants. Perhaps you can try that. Also, I’ve done the whole putting my hand under his and gently speaking to redirect- ask about a favorite memory (I usually ask about his motorcycle or how he met his wife). But it’s exhausting.
Make sure to find support geoups (if you can- I can’t get away to do that) and take time for yourself if possible. Respite care at a senior center or an assisted living. Just know this is a stage, it’ll pass. I’m never sure if that’s really a good thing, but so far most of these quirks have been temporary until a new quirk shows up.
Don't argue with them. You can deny taking something, but try not to be confrontational. "Oh no, Mom! Your embroidery scissors is missing? That is sad. I know that those are a particular favorite of yours. I know I didn't take them deliberately, but I might have picked them up by mistake so let me help you look for them. If they don't show up in a couple of days, let's buy a nice replacement."
*Please try not to take it personally.
*Let her tell you all about it, with you repeating a couple of words every so often, so she feels validated.
*Try to "turn off" your hearing (ignore the discussion).
*Try redirecting her onto another subject or activity.
*Try going along with it and offer to help her "find" it.
*Try NOT to argue, it only makes it worse. To HER, the item has been stolen. She doesn't realize SHE misplaced it and will probably accuse you of "putting it back" anyway. This, unfortunately, is a loose-loose situation.
*Good thing is this won't last forever...however it feels like it.
Good luck and prayers for you both.
If you click on some of the topics above there are more. Sympathy and hugs!
You and your mother are young to be coping with this. Perhaps it would help to look ahead, and think about what you are going to do when neither she nor you can do it. Then you can at least give yourself an end point for when you have to have the patience of a saint!