Now What?

When I first took on the care of my mom and dad (specially my mom) five years ago, I was dealing with depression in a big way. I refused to let that stop me – I felt that caring for them would drag me away from myself and give me a purpose. I knew it would be hard, but I avoided thinking about just how difficult the road would be.

Yes, it was the hardest thing I have ever done, that I can remember, in my entire life. Twenty-four/seven care, when my mom was demanding physically and emotionally and my dad was falling on a daily basis but still driving his car and taking walks. After a year, we started having help come in so I could get out of the house without worrying about terrible things happening while I was gone. I thought it would make life easier, but although I did get out to shop, my parents were never happy with the hired caregivers. They didn’t do things the same way I did. There were things they were not allowed to do (dispense medicine) legally. Sometimes I came home to disaster. Once I was even asked to come home because of a problem.

A year and a half later, when we were sort of acclimated to the hired caregiver thing, I was frankly still utterly exhausted. Mom was waking in the night thinking she was in the garage and when she called dad’s name he didn’t hear her. So she got up. And she fell. And she fell while walking with her walker. There was other behavior that wore me out related to her dementia and bathroom issues. I found it more and more difficult to be patient and loving. I thought if I could just not have to care for her all day and all night, things would be better. It all came to a head before I had to have surgery, and mom was placed in a nursing home. I thought: now I can be the loving daughter I wanted to be. Things will get easier. And they were, in the fact that I was able to sleep all night without interruption. But mom was extremely agitated at the nursing home, and it didn’t get any better on that front. I spent time running back and forth to see her with dad. Sometimes dad would drive himself. Then that had to stop, because it was just too dangerous for him to walk from the car to the building without a walker. I started driving to the nursing home every day.

When it became apparent that mom was in severe decline last month (declining all year), I thought it would be a relief when she died; a relief for her, and a relief for those of us left behind. I was sure that once I no longer had to visit the nursing home on a daily basis, I would have the time and energy to get something done here at home. Apparently that is not how it’s going to work. I’m lethargic and just as exhausted as when I was going out every day. Dad and I have lost that daily focus.

So now what? We are people who are not good at structuring our days – at least I am not. I have things that need to get done. Cleaning and sorting and organizing. I have forgotten what I love to do – I don’t remember what fun is. Part of me wants to get in the car and just take off on a road trip. I want to take craft workshops, art classes again. The other, exhausted part of me wants to know who I’m kidding. I have no idea where the energy would come from to do even the things I think I’d like to do.

Now what?

Grief

Just wanted to quickly say that relief and grief go hand-in-hand when the person you love dies a slow death from dementia and then their body fails and they really die.

I wish we could all appreciate each day we have with those we love. Life isn’t quite that simple. There is exhaustion and pain and anger and illness; and all of these things get in the way of giving love and receiving love on a daily basis. So I grieve for the days I lost because those things kept me from fully loving, fully giving and fully receiving love, from my mom and all the other people in my life.

I wonder how long it will be before I stop crying in the middle of driving or while I’m looking at facebook or trying to go to sleep. I wonder how I can help my dad because he must be grieving as well but not showing it. It’s hard to dig out of the hole I’m in right now and offer anything to the world that is of use.

That’s all.

It’s my fault you’re in pain.

Mom has a lot of guilt. It takes so little to cause her to feel it.

I’m exhausted today – both mom and dad had physical therapy yesterday morning – dad had balance therapy, mom had water therapy, close times, so I brought them at the same time. Dad had a doctor’s appointment in the afternoon that took a while.

Dad’s therapy does not tire me – I bring him there, he does all the work. Mom’s does wear me out. I have to help her into her suit, and get her a shower and dressed afterward. The bathroom/shower we use is handicap equipped, but there isn’t a lot of room for two people if one is in a wheel chair. The shower is very small. I get really sweaty and wet helping with the cleaning and dressing process.

I’m also in pain. Lifting the wheel chair and walker in and out of the car several times can do that to me. I’m also pretty burned out, to be frank.

As I was getting mom in bed tonight, she’s in pain and doing her usual song-and-dance about needing to get in to see “someone” who can tell her why her buttocks and leg have pain. She began to cry while she had her pill bottle in her hand ready to take her PM meds and when she reached for the tissue the bottle slipped from her hands and… yes, I yelped, and yes I sighed. I admit it. Picking up pills off the floor was not on the top of my list of favorite things to do. This made mom cry more.

I told her that I’m in pain and I sound a little grumpy and it’s more to do with me than her. “It’s my fault you’re in pain” she wailed. “Well,” I told her, “I was in pain before you came here. I had back trouble before you moved in. I even stayed up too late before you came here. I’m afraid you can’t take credit for all my pain and trouble.” True, doing more caused some of my pain today, but her fault? Nope.

It’s difficult seeing my mother so different from she was when I was growing up. Her memory and comprehension have suffered, and she struggles with days and time of day, seasons… but this guilt is familiar. Mom always took on the responsibility and guilt for every scrape, bump, fall, hurt feeling… you name it. It’s just multiplied now.

Dad, on the other hand has become easier to live with, which is saying a lot.

Things are what they are now. I can’t control mom’s guilt, I can only to my best not to encourage it. The only person I can potentially control? Me. Darn. I’ve stayed up too late again…

Depression

I’m finding it very difficult to stay upbeat these days. Mom is severely depressed.

Mom’s still grieving the loss of her independence, even though it’s been years since she’s actually been independent. She’s grieving the loss of her home, the home she imagined she’d be living in until she grew so old she dropped dead in her tracks. She imagines that she has been ripped abruptly from a fully independent existence to this place, my home, where everything is different and things go by “my” rules.

I understand all of this on a conscious level. I know she needs counseling to go with her antidepressants. (It’s hard to find a counselor she likes and trusts.) It’s just difficult to be busting my tail day in and day out for someone who, though they appreciate it on some level, is miserable about being here. Dad isn’t much happier, I know, but he doesn’t express it.

It’s not like when the kids were growing up and they didn’t appreciate what was being done for them. At some point they DID understand, and at some point (I’ve heard) they move out on their own. I know that my dad’s Parkinson’s will get worse… is getting worse. My mom’s dementia is getting worse and so is her depression. Mom has it in her head that if she just gets her body “fixed” she will be magically transported to that independent state she was in 6 or 7 years ago. She wants x-rays and tests and procedures and surgery…. fix it. It can’t happen. Arthritis is irreversible. A bent spine is not going to get straightened. Pain can only be managed sometimes, and then it’s just barely. The end of this journey is truly the end, or a nursing home for my parents. Not a happy ending.

Sometimes I want to give up. I am not sorry I decided to care for my parents, but something has got to change or I’m going to be in a straight jacket or in a hospital with a heart attack. How do I take care of myself when my mother is so miserable? How?

Stories

My mom has been in the mood to tell me stories this past week. They are, for the most part, stories I’ve heard over and over again. They can be categorized into at least two types: events, and emotions.

The events are sometimes things I’d rather not know, classified as too much information: grandma deciding she doesn’t want any more pregnancies and telling grandpa she isn’t going to have sex, and grandpa feeling sad about it is not something I really needed to hear over and over. My grandmother lost a son (and mom a brother) to SIDS, and my great aunt blamed grandma, saying it was because the baby was nursed in front of a fan. My grandma’s ignorance of the workings of the female body and reluctance to talk about it with her daughters meant that my mom had to find out from her older sister about her menstrual cycle. Stories like that stick with me, but I don’t tell her to stop because she seems to need to talk about them.

Some stories I enjoy hearing: mom talks about the garden her mom planted and the vegetables they harvested. She enjoys flowers and talks about the bushes and flowers they had in their yard. I also get to hear about what I was like as a baby from time to time.

The emotional stories are harder to hear. Mom did not have an easy childhood, at least in her mind. She was shy, but prone to temper tantrums at home. She lived in a very small town and was picked on. Mom turned to books and was an excellent student, but the pain of never feeling like she fit in never left her. Apparently my grandpa told someone that mom was unstable, and she believes that to this day, even though she claims she was very close to her father. She felt like she and her mother were never very close and is sad about that. And she mourns the loss of the life she thought she’d be living until the day she died.

Sometimes I feel like saying “Didn’t anything good happen in your life? Isn’t there anything you can find that’s positive about the situation you are in now?” and I desperately need to connect with someone, anyone, who can remind me that life is good and can be fun.

Last week I spent a few hours with a couple of friends after mom and dad went to bed. I was tired, but oh, it was so nice to be with people who enjoyed the things I enjoy. I need more time like that. I need a vacation. But that’s for another day.

Gratitude

Sometimes I get bogged down in the difficulties involved in caring for my parents. I often forget how my life has been enriched by their presence here.

Before my parents came to live with me, my house was in total disarray. It’s not in tip-top shape, now, but I have donated or tossed an amazing amount of my clutter.

I was very depressed, and the dishes and pans would pile up in the kitchen, only getting washed when they were needed. Now, pans may sit until the next day from time to time, but I try to keep the counter tops as clear as possible.

The laundry area was impossible to navigate, there was so much piled up. The bathroom next to the laundry area (the only one downstairs) was not usable because I had taken the toilet out to replace the ring and found the floor needed repair… and decided to rip off the wallpaper while the toilet was moved… and then I wound up having surgery and the room became a place to throw everything. When my mom needed to move here, we hired someone to finish the work I started and put in a new toilet. How wonderful to have a bathroom on the first floor again!!

The flooring on the first floor was in desperate need of replacing. My parents arrival forced that change as well. Such a relief.

We added on to the house, which was not something we had ever planned on, but that addition took the place of a screened porch that was an eyesore. I’m still dealing with all the crap that we had thrown out there to “take care of later.”

The biggest change has been a sense of purpose. Two years ago, I could not get myself together to do much of everything, but when it became imperative that mom and dad move from their home into a place where they could have help, I was pulled body and soul into the here and now. Reality check. I did not want to live like I was living.

I’m a hoarder. I have so much (still) that I don’t need, and having my parents here forces me to face this on a daily basis. I can’t retreat into inaction, or everything falls apart, and the fallout is impossible when that happens.

I suppose I should mention that I love my parents and it’s great knowing that I can help them remain in a home atmosphere for as long as possible. Sometimes they seem so miserable that I wonder why I’m doing this, but I know they would be more miserable in a nursing home setting so I have to keep that in mind. It’s hardest when my mother says things like “I feel like I’m not long for this world” or “I don’t know why I’m still alive”….

But I am grateful. Really. I am.

Getting through the day.

This is how I feel today. Getting through it. Lonely. The sun is out, the weather has warmed into the 40’s. I think that’s the main thing that has kept me from sinking deep and staying there.

Mom woke at 3:40 with a vivid dream and needing to get to the bathroom for a change of nightshirt and brief. When someone takes as many sleep-inducing medications as she does, this is a struggle and a half – with me doing a lot of the holding up, cheer-leading, and clean up. She thanked me for all I do when I got her back into bed.

She slept until 9:40am and I did, too – turned off my alarm and didn’t get up until she called me. Home health was due to get here at 10, and it was a new worker, so the nurse supervisor would be there to “orient” her. It did not go well. I got mom cleaned up, partially, then turned her morning routine over to the workers and started getting the breakfast put together – coffee, medicines, etc. My dad had been waiting a while to eat and needed something so he could take some of his meds.

Half-way through the breakfast making routine, mom called my name. I went into the bathroom and got a tongue-lashing for having left her alone with new people. She was angry and sobbing and chastising me… and said the only person she wanted to get her ready in the morning was me. Ever. When I told her I couldn’t guarantee that, things went down-hill.

It’s amazing how little changes can throw her off. I do things a certain way. She’s used to it. If someone dresses her differently or moves her in a different way, it’s traumatic. And it’s also wearing on me to have to do this day after day. I know she loves me, and I appreciate that she is happy with how I do things, but I can’t be here all the time.

This day has been incredibly depressing and lonely. I wish there were others I could talk to who understood.