We Need Caregiving for Caregivers of Parents with Dementia

We Need Caregiving for Caregivers of Parents with Dementia May 18, 2015
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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20 responses to “We Need Caregiving for Caregivers of Parents with Dementia”

  1. I was primary caregiver first for my om who had alzheimer’s, then mom and dad; dad stopped taking care of himself and he had very mild case of dementia, then caregive for my dad. I was there 24/7 and had help from my brother, but it still suckded the enrgy and all thoughts of life right out of you. I’m surprised I came out of it with my sanity intact. My physical health is another stouyr. My mom would hit when she got upset.To keep form getting black eyes and bloody noses, I would turn my back on my mom and she would end up hitting me int he neck. I now have severe neck problems because of this.

    • It’s rough Anna. Mama doesn’t hit me. But she’s taken a few swings at my sons. They’re grown men and can handle easily physically, but it’s hard for them emotionally. Also, when she curses them, it’s very hard for them. Our primary way of handling it is to joke about it among ourselves and to remind one another that this is just the disease and not her.

        • The thing that comforts me and really obviates a lot of the grief over what you’re describing is that I know Mama is still there and when she enters the next life she will be whole and entire. This is just a phase. That knowledge helps me enormously.

          You’re mother is through this now. She’s on the other side, and you will see her again.

  2. The urgicare charges you $160 for a visit? That is outrageous. They charged me $40 when I sprained my ankle. Actually they said I had fractured my ankle and sent me to an orthopedist who looked at the x-rays and saw nothing wrong. These urgicare places can be shoddy.
    My continued prayers for you and your mother. I was the caregiver for my father (well, my mother was too) until he passed away, and now that my mother is 81 I’m her caregiver as well. I know how hard it can be.

  3. I’ll be praying for you.

    On a side note, have you read Peter Rosenberger’s Hope for the Caregiver? I haven’t been a caregiver of any kind, and I don’t know what I would do if I ever had to be, but I can vouch for it helping in a sense with my own depression. The author has been taking care of his wife for decades, so I don’t doubt his right to talk about it.

  4. I am reminded of the life of Margaret Sanger. She cared for her tubercular mother as she suffered from tuberculosis herself. That was back in the days before the invention of antibiotics to treat tuberculosis.

    I wish you the best in your heroic efforts.

  5. I can so relate to what you are dealing with. Every day is a new challenge with my husband. All of us who are caregivers need caregivers—-I agree. I had one person tell me I was a saint—I told him no, I just do the best I can. By the evening I’m not always a patient person. He hits the sun-down phase of nightly and by that time I’m tired too. Please know that I am thinking of you and wishing you some better days. You deserve them.

  6. This is really hard and I’ve been praying for you. I was thinking about your comments regarding relief and help for caregivers.
    Needs like that have been filled historically by local movements inspiring religious and laity together. That’s how the St Vincent de Paul Society started, with St Vincent’s inspiration of care for the poor. San Juan Bosco did the same, inspiring care for orphans and street children. These were always inspired by local needs. I know of one such ministry. It’s a hospice organization that follows Catholic teaching on the dignity of all human life.
    I see two areas where we need to work, care of the elderly and their care givers and care of the mentally ill.

  7. Are there any Caregiver support groups in Oklahoma? Maybe a Nursing home or an Acute Care Hospital offers some courses on how to cope and/or support one another? Here in So. Calif. we are fortunate enough to have these classes and support groups for caregivers who care especially for persons with dementia.

    Will pray God’s will be done. May He cover you all with His mercy, love, and compassion.

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