We Need Caregiving for Caregivers of Parents with Dementia

Copyright Rebecca Hamilton. All Rights Reserved.

Copyright Rebecca Hamilton. All Rights Reserved.

A few days ago, I had someone praise me for my “witness.”

This person was referring to the fact that my family and I are taking care of my elderly mother. I wanted to interrupt this person and tell them the truth of it, which is that my “witness” is shot full of holes.

Caregiving for an elderly person with dementia can seem like a piece of cake early on in the process. But as it progresses, and more of their brain switches off, it becomes increasingly fraught.

On top of that, I keep getting sick. Not, terrible sick, but bad enough to suck all the life out of me and make every day feel like a march through knee deep mud. I’ve had two colds in two months. Colds aren’t much of anything, unless you’ve got asthma. But put a cold together with asthma and no sleep and all the rest of my life right now and you’ve got a recipe for lungs that just won’t work.

That’s what happened in March. I somehow did not get pneumonia, which the doc assured me was what happened to most folks. But I did get such a bad case of on-going, never-stop asthma that, as he told me, “Your lungs aren’t moving air.”  Enter the miracle of antibiotics and steroids, and I got all healed up and back in the race again.

Then, along came another cold. It sent Mama to the er last week. Now it’s gone down into my lungs and formed an alliance with the asthma. I’m probably going to have to do the antibiotics/steroids all over again.

Why am I telling you this?

Because I want you to understand that my “witness” is a weak and faulty thing. When I’m lying on the sofa, coughing and hacking, I’m not exactly doing a good job as a caregiver. Mama, who can no longer follow a book or a plot on tv, and so is no longer amused by either books or tv, demands constant amusement.

When I’m sick, I can’t do this. Instead of working with her to keep her wound up and moving, I end up letting her sit on the sofa like a zombie, or I send her to her room where she falls asleep. That’s not good care of someone with dementia. But it’s all I can do when I’m sick.

I’ve never resented the spring storms the way I have this year. They set off my arthritis, and somehow or other the stress with Mama seems to make that worse. Plus, I feel the weight of taking care of her in a storm in a way I never felt the weight of taking care of the kids when they were little.

Compared to her, they were ez pz. When they were very small, I just picked them up and did what needed doing. When they were full-on kids, they did what I told them in difficult situations without argument.

But Mama is a never-comprehending rubics cube. She trusts me and will do what I ask of her. But if I’m not there, she fights whoever is trying to help her. That adds a dash of salsa to the storms that, for some reason, seems too much.

That’s what I’m dealing with right now: Too much. It’s all too much. And I’m not sure why.

I think I’ve solved the doctor thing. I simply went on a doctor hunt, and it turned out that I landed on the right square early on in the search. The doc and the staff at the er last week were kind, and they understood my situation almost without my telling them. That was a blessing.

Everything is do-able. Today.

That’s the only promise a caregiver for someone with dementia has: Today. Or, maybe not even today. It may end up that all you know is that things are going good right now. In an hour, it can change, and you are dealing with a full-on hallucination or making a fast trip to the er.

But for today, for this minute, I have loads of help from my kids, and Adult Day Care, and I have prescriptions that seem to be working with Mama and my only problem is that I Do. Not. Want. to go to the doc myself.

I would rather eat dirt than go spend another $160 at an urgent care place to get a script for antibiotics and steroids. But I know that primary care docs with their $20 copay take about 3 weeks to see you, and this isn’t worthy of an er (which is much more miserable than going to an urgent care facility, anyway) so, I have to do the $160 do to get a couple of scripts that, to be honest, I could write myself.

See how I whine? See how negative I’ve become?

That’s what I’m talking about when I say my “witness” is less than shiny bright and pretty.

In truth, Mama’s dementia is doing at least as bad a job on me as it is on her and I can’t figure out why. I hit some sort of wall when she stopped sleeping at night. I know part of that wall was simple exhaustion.

One of the two hardest nights of her dementia so far was last month, when I was sick and she would not stay in bed. I felt so lousy, and she was up and roaming and had to be managed all night long. Before these new meds, she argued with me and refused to go back to bed and had hallucinations that terrified her and made her unmanageable.

That night was about 30 years long, and the next day, I was so sick I had to get medical help for myself.

Then, when we put her in the in-patient diagnostic and she just slept through the night and didn’t do any of this for them so they could help us with it, I hit some sort of despair point. I cried for days and couldn’t stop crying. We finally managed to get a script that actually does help, that not only lets her sleep at night but clears the hallucinations.

Things should be all better now. In fact, they were looking up, then we got this blamed cold. The high wire act of dementia care is such that something as simple as a cold can cause everyone to fall off and into the net. That’s what’s happened to me.

The thing I hang onto is something a man whose name I never learned told me years ago. I taught a class at Youth With a Mission in Hawaii a few years back. It was a glorious experience, spending an entire week in that beautiful Christian environment. Everyone I talked to was a spirit-filled, all-in Christian who wanted to change the world for Christ.

One evening, I was sitting out, watching the sunset, when a man with a baby joined me. We got to talking and he told me the story of how he came to adopt this baby. Long story short, the baby had no one, and he was reluctant to take on raising a child at his advanced age. But when he and his wife did adopt the baby, the child blessed their lives with love and wonder as only a baby can.

“God only wants to bless you,” he told me.

I keep thinking of that comment when things are difficult with Mama. “God only wants to bless you.”

I believe that, and I know it’s true of me and my situation right now. Mama has been a blessing to me all my life. Seeing her home is not a punishment. It’s a gift. A blessing.

That thought is what dries my tears and pulls me back out of despair. I write these blog posts as unsparingly as I can because I think that as a society we need to face up to the fact that we not only abandon our elderly, we abandon their care givers.

Care for people who have dementia is a act of life and love. It is pro life for real. Euthanasia, which is being pushed as an “answer” to dementia and a “relief’ for caregivers, is satanic. It is from the blackest pit of hell.

What we need to do as a society is take off our blinders and help people who are caring for their family members with dementia. We need something like the Rain Teams that Christians once formed to help people with AIDs, only for families who are caring for loved ones with dementia.

Care of the care-giver is a forgotten piece of the equation of caring for our elderly. I can tell you that as the dementia gets worse the caregiver begins to need love and support every bit as much as the person they are caring for.

My “witness,” such as it is, is a call for us to do better. It is not a “witness” of my heroism and perfection. It is, rather, a witness of my weakness and failures. I am not a cheerfully self-sacrificing saint. I am everyman and everywoman, just muddling through and hanging on and falling flat and getting back up.

I do not fall into raptures of grace when I am dog tired and at my wit’s end. I sit down and cry. I am not always reasonable. I do not always do the right thing.

I am you. And me. And every one of us.

That, and not some idea of perfection, is my witness. It is why I can say without equivocation that caregivers of elderly parents with dementia need help. They need love. They need comforting and support.

The Lord only wants to bless us. And the first blessing comes from His command that we “Love one another.”

All His blessings are blessings of love and life. Seeing Mama home is a blessing of love and life. If we rise to this challenge that I am making and will continue to make, and help caregivers of people with dementia, we will be blessing ourselves and one another with love and life.

I write about Mama with as much honesty and raw reality as I can. The reason is that I am issuing a call. I am calling Christians to formulate means to help caregivers of people with dementia in the simple, human ways that they need help. Put life and love back in their days of chaos. God wants to use them to bless you.

All God ever wants to do is bless each and every one of us. And the first and only true blessing is love.

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My 24/7 Mama and Zombie Days

mama.jpgMy mother is doing a new thing with her dementia.

A couple of years ago, she stopped eating. It took all sorts of finagling to get her started again. Now, she eats and demands ice cream (which she always tells me she hasn’t had “in years”) in between meals. Yesterday, she asked me how I was doing. “I haven’t seen you in a long time,” she said.

A few months before she quit eating, she stopped drinking water. We had to put her in the hospital a couple of times because she got so dehydrated. Then, we managed to get her going again on drinking water, and now it’s like it never happened.

The new deal is that she won’t sleep. She was up — and me along with with her — all night Sunday night. Just refused to go to bed. All day yesterday she was hyper confused and weepy. But she wouldn’t take a nap and when bedtime came, she flat-out refused to lie down and go to sleep.

I managed to get her down by being very firm with her. I scolded her like she was a two-year-old (which makes me feel like a rat) and told her to lie down and go to sleep. She slept, but I didn’t. I was up until almost four in the morning, and then I didn’t sleep when I finally went to bed.

Long story not so short: I’m taking a zombie day. I had all sorts of things planned that I needed to do, but I don’t think I’m going to do them. My brain is mush and I feel all sorts of jangled and disconnected. I don’t care about anything right now.

This is what caregiving for the elderly can be like when it gets choppy. My mother is unfailingly sweet. The whole time she was up during the night, she was chirpy and jazzed. She kept greeting me with delight and wanting to go for a drive, get ice cream or just chatter.

The bad part was the next day, when the exhaustion left her confused and unable to function. She was in one of those down moods when she knows that her mind is haywire and she feels demoralized because of it.

But as night came on, she started shifting upwards, ready to roll on into dawn again.

I’ve learned that we can get her past these things. Overcoming the refusals to eat and drink taught me that. It takes a concerted effort and lots of imagination, but it’s possible to flip the switch back into place and get her going again. Right now, I’ve got to re-teach her night and day. Odd as it seems, night and day have been an increasing challenge for quite some time.

I’m not sure why, but she forgets that night is night and then gets upset when other people don’t respond to her in what she thinks is the proper manner. She can go for hours, waking you over and over every minute or so with the same request. It’s usually that she wants to get ready to go to adult day care.

I just dealt with it as best I could. But an all night elderly romper room is too much. We’ve got to flip the switch back. I may ask the doc for sleeping pills, if nothing else works. I hate to do that, but, hey, she can’t go 24/7 for very long. For that matter, neither can I.

In the meantime, I hope you’ll bear with me. I’ve got cotton brain.

 

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What’s With Our Cold-Calling Pope? I Don’t Care.

I’m sort of loggy and hung over from long days at work this week.

Maybe that’s why.

Maybe that’s not why.

Maybe it’s because of something else.

All I know is that I don’t care if Pope Francis called a woman in Argentina and told her she could take communion. If he did, ok. If he didn’t, that’s ok, too.

Whatever he said or didn’t say, it was a personal conversation between priest and person, not The Pope, speaking from the Chair of Peter and defining the faith for the entire Church.

I am all worn out from the legislative wars of this week. I am also at a loss about how to keep my mother on an even keel while I’m at work and away from her for so many hours. She is, in this in particular, like a small child. She gets separation anxiety when I’m out of sight for too long and nothing can fix it but time with me.

I’ve tried having my secretary call her every hour and remind her that I’m working and I’ll see her later. That helps, but it doesn’t fix it. I’ve asked the people at her day care to remind her that I’m at work, also. Again, it helps, but it’s not a fix.

Yesterday, I was in the middle of debate on a bill, mike in hand, giving it my best, when my phone lit up. It was Mama. When I talked to her later, she said, “I want to ask you to forgive me.”

“Forgive you for what?” I said.

“Forgive me for whatever I’ve done that has made you go away from me and not see me.”

I get one of those apologies (usually with tears) at least once every day.

She forgets, no matter how many times people tell her, that I’m at work. She also forgets that it’s only been a few hours since I saw her. She doesn’t believe that I’ll see her again in a little while.

I never knew before going through this with her that living in the now was such a tortuous thing. Do not make light of your short-term memory. It is a major governor on your life that keeps things steady and gives you perspective and reality about everything and everyone you encounter.

When I got up this morning — after getting home from work at about 11pm and sleeping for only a few hours — my mind was basically cottage cheese. The possibility that I would write a two-word sentence that was comprehensible was slim to none.

I did my due. Took Mama out for lunch. Took Mama to the doctor. Took Mama for a drive and her daily ice cream.

Now, she’s sleeping it off like a baby. She’ll wake up soon and she won’t remember any of it. The new story will be that she hasn’t eaten or seen me all day long.

She will call people and tell them that I’ve left her alone in the house for days and that I won’t give her food and that she’s slowly starving to death.

Then, she’ll eat supper and chill out, watching ESPN until bedtime.

Now … what was I saying about Pope Francis and the Argentine lady and communion?

Oh yeah.

I remember.

I don’t care.

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My Drug Addict Family Member and the Witching Hour

Witchinghour32

I called it the Witching Hour.

Toddlers melt down at around 5pm every single day. This fact is well known to stay at home moms and other peculiar people who spend a great deal of time with little children.

Just about the time you are up to your elbows in getting supper on the table, the babies start cranking out tantrums, whines, arguments and fights. It’s as if someone put crazy drugs in their afternoon snackies.

Nobody told me about the Witching Hour. Like so much about raising little children, I had to learn it the hard way. But once I got it figured out and took the This-is-gonna-happen-so-put-your-foot-down-and-slide attitude, it became manageable.

I thought I was through with all that when my kids grew out of it.

But I find that I am once again caring for a toddler, and the Witching Hour is back. This particular toddler is approaching 90 years of age and has a random memory of having once been an independent, free-wheeling adult. She remembers that she once paid her bills, balanced her check book and fought all my battles.

She is my mother, and I love her so much it makes my teeth ache.

The Witching Hour evidently applies to elderly toddlers as much as it does baby toddlers. Every day at about 5 my mother melts down. She doesn’t roll on the floor and wail the way babies can do. Her tantrums take the form of hand-wringing anxiety and fear. If she doesn’t find something to hang this anxiety and fear on, I can distract her out of it. But thanks to the the occasional slip-up, or, more often, the family drug addict who has no conscience about ripping off her elderly grandmother, there are days this becomes impossible.

One day this week, my mother found a bill from her latest hospital stay. How she got it, I don’t know. Everyone in the family works at keeping anything that will set her off away from her. We censor her mail by lifting the bills and any advertising that looks like something she might think was a threat (she’s amazingly creative at interpreting advertising as threats) and only letting her see the harmless stuff.

For years, I wanted to end her subscription to the newspaper. Every time they said something nasty about me (there are spells where that can be an almost daily occurrence) she would warp out. I kept telling her that I didn’t care and it was fine, but she is my mother and … well … you know.

Somehow, despite our almost paranoid vigilance, she got her hands on this $35 bill from the hospital. And she warped out. It took forever for me to pry the fact that this was about a bill out of her.

We’re in a horrible mess, she kept repeating. They’re going to take everything. 

When I asked her who “they” was, she would say, I don’t know. 

When I asked her what she was talking about, she would say, I don’t know. 

She cried and begged me to take care of it. PLEASE take care of it. 

I finally figured out it was a bill. My son took it and tore it into tiny pieces, which is pretty much the way we all felt about the thing.

I was so shot by the experience I wanted to go somewhere and just curl up in a little ball. When my mother cries like that, it rips me into as many pieces as my son did that bill.

Then, yesterday, she came to me in tears, almost vibrating with fear. We’re in a horrible mess. 

The house (meaning her home where she no longer lives) is in a shambles. Those people (meaning my drug addict relative) have trashed it and now it’s on us to fix it or the government will tear it down. 

 She was crying as if her heart was broken, and scared out of what remains of her wits. We went through another round of 20 questions and I slowly pieced together that she’d gotten a call from a bill collector over yet another fraudulent bill that the family drug addict has run up in my mother’s name.

The house, so far as I could tell, was fine.

This bill-collector-calling-about-things-the family-drug-addict-has-done-in-my-elderly-mother’s-name-thing happens fairly often.

For instance, about a week ago, I got a call from the adult day care center where Mama goes while the rest of us are at work, telling me that she’d been on the phone, giving out information to somebody. When the staff person took the phone and said this lady has dementia, who are you the caller got snotty with them. I dropped everything and went to the day care center, took Mama’s phone and called the number back.

When I got the caller on the line, they wouldn’t tell me who they were, even though I have power of attorney where my mother is concerned. It’s been a long time since I’ve been that angry. I mean, these people called and hounded an elderly woman who obviously has dementia at her day care center, and then would not tell the responsible party who they were.

After a round of me losing my temper totally with them, it turned out that they were trying to collect a debt for thousands of dollars somebody has hung on my elderly mother. I don’t know for sure, but if this isn’t more handiwork by the family drug addict, I’ll be surprised.

The Witching Hour is so common that the people at the day care center have their own name for it. They call it “sun downing.”

I don’t know if it’s just about end-of-the-day tiredness, or if there’s some sort of hormonal change that occurs in our bodies at that time of day. All I know is that people at both ends of life get upset and bothered around 5pm.

If there is no call from a bill collector or threatening advertising or some paper bill that slipped into her hands by mistake, my mother just tends to spin webs at this time of day. She’s cranky and she wants what she wants, which is my attention. But she doesn’t fall apart on me.

However, if anything slips through the net we put around her, she goes out on us.

The family drug addict’s parasitical behavior is by far the most difficult for me to tolerate. Everyone else in the family works together to care for and protect my mother. Then we’ve got the family drug addict out there, trying to prey on her and actively hurting and upsetting her.

I don’t know exactly why I’m writing all this. Maybe because I am worn slick with it today (I’ve had two really emotional Witching Hours back to back.) and I need to talk about it.

I do know this, and it’s a surprise to me to learn it. Taking care of an elderly parent is, if it’s a family enterprise and you have wonderful services such as Adult Day Care, surprisingly do-able. But when one member of the family decides to become an extra burden, they can wreak havoc.

I am privileged to be able to take care of my mother. I am also blessed to have sons who, even as young men in their twenties, are completely willing to care for her, too. I see them do this, and I feel vindicated as a parent. I raised two wonderful, loving men.

As for the family drug addict, I am at my wit’s end.

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