I miss my life...it used to be good.


I dropped by to see Mother two days ago on my way to visit my daughter and son-in-law for the holiday weekend. I could tell right away she was having one of those "bad" days: just standing there unable to move in her assisted living room. In a split second she fell sideways and hit the floor, breaking two fingers. So, instead of spending a wonderful weekend the kids, I spend the next 8 hours in an emergency room with mother. They put a splint on her hand and told us she'll need surgery next week.

When I got her back to assisted living, she literally couldn't get up or walk. With staff help, we wheeled her up to her room. Next day I went to see her and she's trying to remove that bandage off the splint. Told her "mother why are you unwrapping the splint?" "Because they didn't do it right" she answers.

Today my wife and I went to see her and she starts talking about moving back home. (to her house three hours away.) We suspect that she took a double round of pain meds that caused her to get unbalanced and fall. She hasn't been taking her meds properly, so we arranged with the assisted living facility to have them administer her meds.

This sent her into a rage, so she calls me tonight and tells me she's packing up and going home. "The doctors back home can do the surgery. These doctors here don't know anything", she said. She proceeds to tell me how she hates it here and she can't believe I talk to her the way I do. (I had the nerve to tell her she wasn't going back home). In her make believe world, all her friends back home are wonderful people who love her and will do anything for her. When I point out that it is me and my wife who are carrying her to doctors and sitting in emergency rooms rather that her friends back home (who are all old and dying) she just blows me off.

I could have gone to see my college alma mater win their conference baseball tournament today, but I didn't because of "mother", just like I didn't go visit my daughter because of "mother", just like I don't have time or energy to start my dream side business because of "mother", just like I can't travel like I used to because I never know when the phone is going to ring because of "mother."

I had an older special needs brother who died of cancer this past January. He had a special place in mother's heart. She loves me, but not in the special way she loved him. Today when I told her she wasn't able to go back home, she told me my brother "would have never talked to her that way." By today she had totally removed the entire wrapping off her splint. There's some kind of dementia going on. Not alzheimer's because she still knows who we all are. Yet, she told me matter of factly that we went to her house (3 hours away) after we left the emergency room two nights ago, before going to her assisted living place. Whether Lewy Body, or Vascular Dementia, I don't know. Don't know if it really matters. We have her scheduled for a brain scan this week, if she's able to go. But she detects that we are having her checked out mentally, and that pisses her to high heaven.

She has recently begun "picking" at things. (I've heard it called pill rolling.) Removing the splint bandage is typical of what she's doing. It's painful to watch her grabbing at things, sometimes when there's nothing there to grab. (she imagined her purse was in the floorboard of my car when we got back from the emergency room and started grabbing for it. I told her it wasn't there because we didn't bring it. She just kept grabbing at nothing.)

One day she'll be relatively okay, and tell me how much she loves me and my visits brighten her day. Next day she'll tell me she's going home and treat me like I'm the sorriest s.o.b. to ever be called a son. I could go on, but y'all get the point. I dearly love my mother. She wasn't always this way. But these days she's become Mother in the Pink Floyd song "mamas gonna make all of your nightmares come true, mama's going to put all of her fears into you."

I try my best to put on my game face at work, at church, with friends. They don't really want to hear all this, and unless you've lived it, people don't really believe it's "that" bad. I find myself saying, next week I'm going to get back on regular schedule, start back exercising, start writing the book. Then mother simply throws me a knockdown pitch that I don't see coming. Not really asking for advice, just venting because I truly miss the life I once had.



Oh, how I relate. Though personally I feel like I'm flipping between two different dimensions (can you tell I'm a science geek? LOL). My mom is living with us (on the waiting list for a nursing home). My husband, daughter and I have a great life. We live in a lovely little New England town, in a 3-bedroom lake cottage. Our neighborhood is highly social with lots of cookouts, cocktail and dinner parties. So there I'll be sometimes, sitting in my yard with a few friends having a glass of wine on a Friday evening and thinking my daughter's down for the night (she's 9) and so is my mom. Let's light up the fire pit and enjoy some time with friends. Then, there she'll be at the back door, scowl on her face, yelling at me that our televisions are garbage and the remotes never work. Or she'll have plugged up the toilet again. Or she'll simply be inexplicably irritated (she's fairly mobile still - our dementia troubles are all behavioral/personality ones at the moment). Just like that, BOOM! I'm transported from my dimension of household normalcy to the Land of Dementia Oz.

Navigating between logical and illogical and then back again in the blink of an eye is incredibly fatiguing. Especially knowing there's more awful to come before it's over. Wait until our spot in the nursing home is available and we need to move her out. She's going to absolutely lose her sh*t.

Yup. I'm picking up a bottle of wine on my way home from work tonight. For sure.

Stay strong, friends.

RWB -it amazes me how similar all of our stories are. I too am considering writing a book. My sister and I have said this is our “new norm”. We too have said we miss our life and have given up vacations, always waiting for the next phone call. We finally got our parents into assisted living and thought things would be better. Each day a new problem arises. Some days I just want to shut off my phone and hide. I am a Christian and I pray for the strength to handle this. I am afraid to continue to tell my friends how bad it is. I am afraid they are tired of hearing it. Some days are good days and I think ok I can handle this. Then a couple of days later it starts over again. My mother has dementia and Alzheimer’s and we fear that our father also has dementia. Today my father called and said Mom was out of dementia meds which we pay extra for the facility to manage because she went a week without taking them on her own because she thought they were not her meds. We realized we could not rely on Dad now we can’t rely on the facility. I have called the executive director and he has confirmed they made a mistake and are investigating the issue. We are trying everything we can possibly do but what do you do when you realize the people who are supposed to help are making it worse!

Your story hit home with me! I am 51, only child, small business owner. My mom lives down the street from me, independently (sort of). She is an alcoholic who abuses anti-anxiety medications and has taken two falls in the past 10 days (hospitalized once). She is only 76 but now almost unable to walk or bathe, etc. She says she will kill herself if I try to move her out of the house (sigh...). Dad developed dementia (I think years of drinking, drama and negativity took their toll) and lives in a memory care ALF. Mom refuses to take responsibility for managing his care. It ALL falls on me: two miserable people living in two different locations. They are too young to be in this state, so I fear we are in for a very loooooong future...

Sometimes we think we know how life is supposed to be. But, in fact this is life. And this is our life now. Good or bad, easy or hard, it is our life.
We make the best of it and do the best we can.
By the grace of God go I.

8 years I've been taking care of mom...she's 88 now...and still going strong...she lives in an Adult Foster Care facility currently - which she hates.

Previously Assisted Living - which she hated.
An apartment which she couldn't manage - and fired everyone I hired to help and hated it there too (used to say it was 'a hole')...now she talks about it like it was a paradise!

The AFC manages her meds and preps all meals. Wonderful lady from church helps her with laundry and shopping; takes her to appointments/hair and doctor. The backstory there - briefly; she was verbally abusive with me the last time I took her shopping - won't give her that chance again.

I limit my visits with mom to once a week - she got to be too much for me - the constant berating and criticism; arguing about everything; defending her temper (oh, it's just the 'Irish in me' - giggle giggle' - get over it!)

I just couldn't take it. So, at the risk of sounding selfish (I'm 65 in a couple of months) and I know many others are taking care of their elderly parents I just had to get more help...mom wanted to come live with me since the docs told her she could no longer live alone - but that would have been basically the end of life as I know it. I still work full time and take care my home, pets and husband. I just couldn't take on full time care of mom too.

You sound like you've gone above and beyond and it may be time to get more help for your mom - contact Visiting Angels or another help or aid organization in your area to see if they can help by spending some time with your mom...a few hours a week so you can have a rest - write that book or enjoy time with your children. Take some time to re-charge your batteries.

Bless you for what you've done already - and seriously your comments are very well written...write the book!

Hey rwb you are a hell of a good writer. Maybe this experience could be the foundation for your first novel. I'd read it!

Rw- most of us are feeling your struggle personally.
Hang in there will keep you in my prayers. As PB said we need that bit of oxygen to survive, so try and get a good deep breath of it to revive, even if but for a moment.

I totally feel what you're feeling. I'm in the same situation; although this is my 4th year of Groundhog Day (the movie) which I didn't notice til it was too late. People won't understand til they have to go thru it and the sad part is Most aren't emotionally or physically strong enough to do this. Yes, the physical aspect IS there, but no one other than those of us who are going thru it know or understand it. I'm going to tell you this: Right now, writing that book Will save your sanity and it will be your best release of stress you'll be able to get. Do not let it gather dust, even for a month because that month will be a year when you realize how long it's been. Even as little as an hour a week will be good for your health. I've recently started picking up new science fiction novels again. I set aside an hour a week to read and it never fails to relax me 10X more than my sedatives I take for sleep. I have to limit it to just an hour though since I work 12hr/day 6days/week on 3rd shift. Taking care of Mom is, well, it's a son's duty. I do love her but I hate the disease. I have days when I fight that in my heart still, but reading is my release and it settles me down for the next week to come. The other release I'm finding that helps is Here. You can ask questions, give advice or vent and No one think of you adversely or belittle you. Honestly, most will support you and offer advise that helped them. I sometimes get emotional reading some of the other post because my Mom isn't at that stage yet but will eventually end up like that. It's hard looking ahead because it can get depressing and it's only now that I'm beginning to understand why they have said to learn to "live in the moment" when taking care of your parents with this disease. I'm learning to just look forward to tomorrow with her and hope that it's not worse than today was. I'm just looking to wake up tomorrow with the renewed strength to do it again...and to get her to laugh. She looks so much younger when she laughs, like when I was a kid. I'll send a prayer your way to give you strength. BTW, I hope to be able to get a chance to read your book. You might even be able to use this as a story line in your book. God Bless

Rwb - just a reminder for you and everyone including me that when you fly, a flight attendant always tells you to put on your oxygen mask first before helping someone else.

We have to help ourselves first, have enough mental and physical health, before we can help someone else.

Go visit your daughter, and take that vacation, etc. perhaps shorter visit and vacation than you would otherwise, but you need them as much as your mother needs her care.

You have to refill your tank, don't run on empty because that's how we get burn out. I know easy said than done. But I have to to try for my DH and kids' sake.

Also, did you really need to be at the ER with your mother for 8 hours? Could you just have left your phone number with the nurse in charge to call you if they needed someone to make a decision for your mother?

Father's Day is coming up soon. Make some plan for yourself. You deserve it. Same for all the caregivers out there who are fathers.

I’m sorry you’re dealing with such a merry go round of frustration. If it means anything I really do vote for writing that book, you’re a very good writer. I hope you find the opportunity