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.

The end and the beginning

This journey of waiting for my mom’s death is one I’ve never been on before. We learn of the “signs” of impending death, we watch, we reminisce, we wonder. We talk to one another, other family members. We ask ourselves questions – about what we’ve done, what we did not do, and what we want for ourselves in the future. How do we want our lives to end? What is important. This is what death brings the living.

Today, my mother’s suffering ended.

At around 11:20am she took her last breath. I was not there – no one was. The nurse and CNA had just cleaned her up a bit and shifted her in the bed, and when the CNA popped her head in a few minutes later, it was over. I had taken my dad home, since we did not know how long it would take (it could have been the next minute, or later in the day) but we did know it would be soon. It is painful to watch someone breathe their last breaths; at least I found it to be painful. One of my brothers and I and my dad sat by her bed for about an hour. Then my brother had to leave for home and dad was exhausted. It’s been a very long week of waiting and wondering. I was making some iced tea to take back to the home to watch and wait when they called me to let me know mom was gone.

Tomorrow we go to the mortuary to finish the arrangements for the cremation of mom’s body.

After all of the arrangements are made, and the cremation is done… and the memorials are over and only the memories and photographs remain… dad and I will have to start a new routine that does not include feeding mom ice-cream and strawberries for lunch. Life is shifting. An ending, and a beginning. Dad would probably joke that for him it is the beginning of the end, but hopefully we can make his last days, months and years full and happy.

Death is a Noun, Dying is a Verb

“Death is a Noun” was the name of an english class I took in high school.

Mom is dying. Dying? A verb. The signs are there, the first stages of dying. Rapid heart rate. Rapid/uneven respiration. Less responsive. Difficulty swallowing.

We’ve signed her up for hospice. She could live for a few days, or a week. But she’s in the process of shutting down. Some people shut down fast… an organ quits, and the rest follows. My mom clings to life. Last week, she became agitated a couple of days, crying “Take me away! Take me away! God, Take me away!” This week, the CNA was thrilled because mom didn’t fight her bath, or try to bite, or tell her that she hoped she was killed or “I’m going to kill you”. The CNA said, excitedly, “I think we’ve turned a corner!” and my thought was that yes, I think we have, but not the corner you are thinking of. I knew mom had given up. Two days later, mom stopped eating. She chokes on water, that is, when she tries to drink, which is not very often.

Mom’s body is like a skeleton with skin draped over it. Every bone is visible, even under sheets. Her eyelids have a red cast and her feet are cold. When her eyes open… I want to reach in and search for the mom I feel is surely in there, somewhere… but that’s just a fantasy. I want one more moment with the real person I knew. I want one more I love you but there are no more left for her to give. My quota is up, I can only give them to her over and over again never to hear her speak them to me.

I’m told by the hospice workers that they consider death to be just as “holy” as birth. I think I prefer the word “sacred”. Her death will be a relief for her. It will be a relief for us, and a chance to grieve and say good-bye finally and completely.

Hospice?

Mom is “failing to thrive”, losing weight steadily. I wish I had the energy and capability to care for my mom at home, but I don’t. I have no question in my mind that part of the reason she’s going downhill is because she feels like she’s been abandoned. We know we have not abandoned her, but I know that’s how she feels because she expressed it every time she had to spend time in a facility – starting with when she broke her hip around 7 years ago. The fuss she made! Calling my dad all hours of the day and night (fortunately he couldn’t hear very many of the night time calls!) so my dad took her home before she was ready physically, and she wound up on the floor a couple of times… my brother and his wife (who live nearby) insisted she go back. Oh, she was so mad – she never forgave my sister in law for that (when it was a group conclusion mom still blamed my SIL!)

 

Today mom had her bath, and it was again an ordeal. I think we’ll talk about bed baths, although she will not like being messed with in bed, either! My aunt, her older sister, will be 89 next month and still lives at home. She needs oxygen and a walker, but her family checks on her as well as her neighbors on a daily basis. Her kids took the car because she was not a safe driver, but her attitude is so much better than my mom’s it’s hard to believe they came from the same family. I guess that’s genetics for you.

 

Hospice said mom qualifies for their services. It looks like medicare will cover a few more things when you are on hospice than when you aren’t, including, if you can believe it, oxygen. They don’t cover it in the nursing home when you are not on hospice, but when you are dying you are covered. See if that makes sense!! Medicare also covers pain meds and alzheimer’s meds 100%, the rest is whatever you paid before. Hospice provides nurse visits twice a week and whatever aide-type stuff she needs for comfort beyond what the nursing home normally does. They also have volunteers, but I can’t imagine anyone wanting to deal with my mom on a volunteer basis. She has never been a really outgoing person, and is leery of friendly strangers (why do they want to talk to me?). I hate this lingering, dragging, slow misery that mom’s in. Please let me be a happy old person or let me die quickly.

Is it worth it?

Yesterday my nephew called and we talked for a few minutes about his family stopping by to visit. Then he asked “about Grandma…”

“yes?”

“Do you think that your visiting has any – uh – any… benefits for her?”

I think we all ask ourselves this question when we have people whose mental status can’t be determined. Those who have parents, children, who seem to be unaware of who we are, or who seem unable to tell us how they are or what they want, all wonder what good we are doing sometimes. My answer to him:

“She seems to know we are someone familiar. I don’t know if she knows who we are, sometimes she calls me mommy, sometimes she calls grandpa daddy. But she knows we are someone she knows. Beyond that, I can’t tell you”

Is that enough? Should be abandon our loved ones because we might not be doing them any good, or do we keep visiting and hope that we are?

The definition of insanity…

I can’t even imagine what it’s like to be in my mother’s (or my father’s for that matter) shoes. But every day I go to see her, I try. I wonder why I’m so depressed.

I do know that it has to be a tough job being her CNA. Sometimes she screams as if someone’s killing her, and fights them. Sometimes she utters curses at them, like “I hope your children die” or “I hope you get killed”. Recently, while 2 CNAs were trying to get her cleaned up, and she was fighting, her head hit the railing and she had a small red mark on her eyebrow. “They hit me” she said. The CNAs don’t come out unscathed. Their arms get scratched, and their ear drums are pierced. I’ve witnessed this myself.

I can’t imagine what’s going on in my mom’s head, and it’s killing me.