In pain, exhausted, and resentful

I’m sorry. Some suggestions: Change the phone number in her records to yours. So they can’t call her. Use your phone number to set up the portal. Have her groceries delivered or get a list from her and go when you can. Don’t answer her texts or calls except once a day. If she gets mail change all the accounts to your address. Is it time for AL or MC? We know how you feel. Hugs. 💜

Set up the portal with her name, but your email and phone number. Ask the front desk at the doctor to remove her phone number entirely. If you have access, order her groceries via an online app for the grocery store. Pick them up or have them delivered to her. Order anything else you can at Amazon and have it shipped to her.

consider an AL. You still have to advocate for your parent, but you know they have staff 24/7 to see to their immediate needs.

Empathy is one of the things that goes out the window for a PWD. They truly cannot understand how much stress they add to your life, nor do they care about it. I totally understand your feeling of dread and resentment whenever the phone rings I had it too. Sometimes I just couldn’t bring myself to answer it. I knew that the AL would call me if mom really needed sonething. There were days that mom would call 10 times.

I know how you feel. You are at a difficult stage right now with her and you will need to find little ways to make caring for her more manageable for YOU until you are able to get her full time care. My mom is in MC now but when she was living on her own in her IL apartment, for 7 years my sister and I jumped at every task, crisis, whim, or item she wanted, on top of all the necessities and scheduled appointments. This completely wore us out and caused us so much stress and resentment. She used to want us to take her weekly grocery shopping (despite having meal deliveries) but it was taking 3-4 hours each trip on top of all the other tasks we were doing for her. After some time we put the stop to that and made her give us a list for us to shop for her. She hated that but we told her that was how we were going to do it now because it's more manageable because there were other errands we needed to do for her. Now that her dementia has progressed, she is in MC we made a visiting schedule (each twice a week, alternating days). It's all I can manage and keep my sanity. She also does not have a phone anymore which has been my saving grace. I used to get multiple calls during the work day and evenings (but she didn't call my sister) and it was so stressful. She had difficulty managing a simple flip cell phone - she went through 4 of them in 3 years. We even had a land line installed but she would turn it off at night and forget to put it back on (she said she didn't want to get calls) so I would have to check in on her after work to put the phone back on. She can use the nurses phone at MC to makes calls but she has not done that. My mom can hold a conversation (sometimes with delusions and confabulations) but she no longer asks about my day or life, it's all about her. I've learned to accept that because it's the nature of the disease, she can't help it. This disease will knock you down and exhaust you to your core and at the same time you feel like you're not doing enough. I've found that coming to this forum has helped me tremendously. The people here understand. Take care!

My mom qualified for Medicaid and was in a program so she could get an aide to go in a couple days a week for 2 hours, which was then beefed up to every day. This worked for a short time. As always we knew that "something would happen" to make the necessary changes to her care. Because our mom did not think she had an issue, we had to wait for the shoe to drop to take control and increase her care. In her case, it was a fall then a wandering incident (involved the police). It shouldn't be that way but as I've learned, her PCP and neurologist were of no real help to us (did not want to prescribe meds and didn't have any helpful info about managing her symptoms). Mom was refusing to see a geriatric psychiatrist before her hospitalization so she was not properly medicated until now in MC. At some point your mom will need full time care, either by home care aides, adult day care or memory care. It's a lot of groundwork to do at first but worth it when an opportunity for more care arises (after a crisis or hospitalization). If you're not already, get your hands on her finances, her medical info (which you're doing) and looking up supportive programs and MC facilities in your community.

My mom really liked the main home care aide. If your mom agrees to it then having someone come to her home at this stage is ideal. Mom had her favorite aide for 5 years. She did everything from cleaning her bathroom to taking mom out for walks outside. She also communicated to the agency and us about anything concerning. There were times when she was not working and had to be replaced by the agency. That's where we had issues. They either weren't up to par or didn't show up/call out. But if you can get at least one good one it's worth it. Wishing you the best!

All of your stories remind me that although my mom's continuing decline is sad to watch, it is much less stressful than earlier stages when she would argue and resist the help that she so clearly needed. Now she mostly moves in a fog through the routines of her facility. But I am grateful that she seems content.

I agree that the loss of empathy is one of the more painful things for us to experience. Years before the changes in memory and judgment were evident to us, my mom greeted the news that she was to be a grandmother with a blank stare and a casual attitude. No joy until she actually saw a live baby. Later she acted jealous if he reached for me while she was holding him - perhaps she thought he was her child? At the time, I had no clue why she was behaving so strangely and not supporting me as a new mom. Now I understand it better. When I learned this year that I had the same cancer for which she was treated at my age, I didn't tell her. I went through surgery and radiation without her noticing a thing. Like a very young child.

JulietteBee, i know its hard to find ways to "take care of you" when you are stretched so thin and your mom's needs are so great. Even small things can help, like turning off the phone to save a bit of sanity. I hope that some of the suggestions here can be useful to you. Every family's situation is different but I have certainly benefited from the hard-won wisdom of the others here. Peace and hugs to you!

We were at least able to allow her the enjoyment of spending time with her grandson when he was small. The gifts that she gave him were rarely age appropriate but it gave her some pleasure to love him that way. He still gets the biggest smiles from her when she sees him, although she can't identify him as her grandchild now. As for me, I was old enough to be a grandmother myself by the time I became a mom, so we were all late to the party!

I think the sibling to share the burden is a grass is greener kind of thing. I have a sibling and he causes me more stress than mom with dementia. I wish I could just do this on my own, it would, without question, be easier. Maybe I just wish I had a sibling with some common sense, willingness to help vs criticize and at least some desire to educate himself about dementia. Yea I’m a bit resentful.

Agree about the male voice. Mom always complained that my grandmother (Mom's mom) listened more seriously to my dad (her son in law) than to her own daughter. Now my DH can get her to do almost anything when she ignores or resists my suggestions! I think too it's the mother-daughter dynamic and the fact that our moms changed our diapers but met our husbands as grown men. We are forever their children. Even when they can't say it anymore 😔