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Tuesday, February 21, 2023

True Charity in the Trenches: A Love Story!

Yesterday, I told you a horror story. Today, on the cusp of Lent, I'm giving you a love story that is so touching I was overwhelmed. It came from a dear friend of mine whose elderly mother-in-law has dementia and is nearing the end of life's journey. He and his wife are caring for her at home in a way that is indescribably beautiful. I'll let him speak for himself:
Mom is dying in phases.

Not eating much just a little bit of a Snack Pack of chocolate pudding and a few ounces of oatmeal with apple sauce and milk to thin it out.
Mom's got difficulty swallowing and is drinking less than 12 ounces of water a day. When she's had enough water she'll keep it in her mouth then spit it out forcefully in your face; very unlike her true personality.

For the last 8 days, we wake Mom about 9:30 a.m. or later. My wife changes her diaper, cleans and washes her mom, all the time as mom CRIES very loudly as if she were being hurt.

We love her very much and her dementia, crying, hitting, collapsing her legs & feet is trying to us but actually is making us love her even more; realizing her time with us is very very short.

Mom curls in the fetal position at night crying herself to sleep and during the day which now for mom is from 11:00 am to 4:30 pm. Outside of those times she is extremely tired and unable to move. We clean mom, change her clothes, bathe her in bed, then let her sleep until she wakes us at 2-4 a.m. needing changed. We have video cameras in Mom's room so we can check on her whenever we can. When she wakes at nighttime, we take care of her until she goes back to sleep or we wake her up to start a new day.

Mom has not been eating as well as she had in previous weeks. Three times daily, oatmeal, ground-up dinners thin enough for her to swallow without choking. I would constantly feed her and make certain she had as much water as I could make her drink. She would eat Chocolate Snack Packs, maybe two a day. Previously she'd enjoy a cherry jello snack pack but no longer; it ends up in my face or down in her lap.

Today 2/18/23 mom is not eating anything and has less than 2 oz of water; this is her third day like this, and it's been better than a week now that mom has not opened her eyes. She cries often in pain and also frustration being belted into her wheelchair so we can keep her from falling over as her body contorts into the fetal position. We try to make mom comfortable and I always try to get a simple response from her. 
About every other day I tell mom I'm going to give her a beauty treatment...YES at 94.8 years old, mom likes to be pampered. I get mom to relax her cramped hands as I massage them with coconut oil each finger each hand for a while then I tell her to relax now as I beautify her face and make her skin ever so soft. Mom let's me rub her face, mouth, nose, eyes, etc. She knows she's Loved. 
My wife, her daughter, fluffs her hair every day and makes it super curly. She also uses a bonnet made specifically to wash hair of people unable to get under a faucet. It works great and looks it too. I make a Really Big Deal to mom about how absolutely wonderful her hair looks as I fluff it up. Then I remark, "Don't you and your hands and face look and feel soft?" Then I take her hands so she can feel her hands and face. She eats  it up. It's such a little effort for even the slightest smile (maybe). I talk to mom slowly and as comfortably as possible and tell her what I'm going to do with her before I do it. That way she's not startled and hopefully more comfortable with me helping her.

Smile's...every day I wake Mom up I stroke her face, and her back. I tell her she looks like she is smiling and very happy. I do this until I finally get a smile or she cries loud enough my wife tells me to stop.

As Catholics, we want mom to live, but know she is dying ever so slowly. We can't put her on IV food & hydration because she'd pull the tubes out just like she removes everything on her often at night and during the day when we aren't looking. For mom to benefit from intravenous food & hydration, mom would need to be unconscious and not moving. She'd live until her body would shut down just as well as mom being cared for by us at home.

We choose to love and care for mom at home. Being a body perhaps kept alive a few days longer isn't the solution. Mom won't get better. Mom is in constant pain from her nerves and muscles constricting, we administer Morphine and other narcotic sedatives so she can be comfortable UNTIL

This is a full-time job both my wife & I have done everyday now for how many months we don't remember, but do it because We Love Mom and no stranger can administer love.

It takes hours to jot these notes down hopefully making some sense as we steal tine away from Mom's care to let a few know what horrors dementia patients face. Their brains literally shrink a lifetime of their memories crowded into an ever-diminishing brain until synapses, nerves, and the autonomic nervous system powers down forever.

Overall my wife & I thank God for everyday we have with Mom and ask him to take her to Heaven with no short layovers or side trips. I've got two Class "A" icons of Mother Teresa that my wife and I touch when we can; asking her to guide Mom happily into her Eternity. We also ask Padre Pio to do likewise.
I have videos of my feeding her. When she was able to talk earlier I'd tell her she had to Eat the boss would fire me if she didn't. She doesn't know who her daughter (my wife) and I are anymore.

Mom said to me with her eyes closed...

"Look, you seem like a nice guy. Don't get mad; don't get angry. Just Leave. You can live on the Streets of DC and get a job there and then rent an apartment."

I asked her if she would write a Reference for me and she said Yes.

My wife cracked up, she had no idea where her mom came up with that.

So cute. So sweet.

This, friends, is heroic sanctity! My husband and I cared for my mom the last four months of her life, but she was totally sharp and aware and a delight to have around. She never complained or cried, but read books, watched the birds, and prayed. It was challenging as she went from being mobile to bed-ridden, but she never stopped smiling and thanking the visiting nurses and aides who came to assist. 

I will always be grateful for that time. But would I have had the kind of patience my friend and his wife have if my mom suffered from dementia and seemed like a baby having a tantrum? That's what dementia does to so many. 

I took Communion to a nursing home on Sundays for about fifteen years. There was a note on the door of the locked Alzheimer's wing that told visitors they were entering Alzheimer's world which really is another universe. I watched residents change from cheerful and friendly into angry and hostile as they sank into dementia. I never challenged anything they said. Some elderly patients talked about their parents as if they were still alive. Others just begged to "go home." I still pray for many of those dear ones who have died.

The world would recommend euthanasia for these "useless eaters," what they call the "good death" which is anything but. They see no value in ministering in love to these precious souls who offer us the opportunity to serve without earthly recompense. What a gift for those with the eyes to see Jesus in these suffering dear ones. What jewels in their crown when they see the Lord at the Judgment and He says, "What you did for my least one, your mother-in-law, you did for Me."

My friend's mother-in-law is experiencing the final journey in the hands of those who love her, who are patient and kind, long-suffering and persevering. They exhibit 1 Corinthians 13 in the flesh. "Love never fails."

Please pray for my friend, his wife, his wife's mother, and all those caring for debilitated or sick or dying loved ones at home. I can't pretend that such work is not burdensome, but it is the "yoke" that Christ promises to make light. I wish I were closer to my friend so I could help, at least with a meal or some time to let them take a walk and just get out of the house. If you know someone with a challenge like theirs, perhaps you can help in some small way, even with encouragement, a Mass card, or a plate of cookies. That could be the best Lenten almsgiving of all.

May God help us all this Lent to think creatively about almsgiving and see the need around us and try to ease the burdens of others like the Good Samaritan did for the wounded Jew.

May Jesus Christ be praised now and forever!

Have a blessed and grace-filled Lent!


Anonymous said...

I didn't read this before, but read something above that referred to it. Wonder if they have heard of the DAWN Method:

Losing the ability to understand “why” someone is frowning
When we are experiencing dementia, we don’t suddenly arrive in a ‘dementia anger stage.’ We simply get hurt and angry often because we can’t use memory or reasoning to consider the reasons for why someone might do something or say something to us. When we can no longer understand why, we take everything personally. We can’t help it. So if our companions don’t understand what we cannot do—and understand how to help us—we all end up dealing with a lot of meanness and anger.

The first reason for why people who’re experiencing dementia often get angry and mean is that they have lost the ability to consider why other people say or do what they do.

The second reason is because they have become unable to change their own moods.

Think again about the cognitive skills we all have and use daily: we have memory skills that allow us to search for and retrieve memories. We have rational thinking skills that allow us to see cause and effect, follow a sequence, and prioritize actions and ideas—essentially, the skills that let us perceive relationships between facts, such as what, where, how, when and especially why.

We can manage our moods—They cannot manage theirs,be%20angry%20without%20realizing%20it.

Anonymous said...

also not sure why not feeding boost or ensure. doesn't the woman need vitamins/nutrition/ protein? maybe if she weren't starving to death, she'd be more cheerful and not wanting to fire them.

Mary Ann Kreitzer said...

I was with both my parents when they died. My mom lived with us the last four months of her life. As her body started to shut down in the final weeks, she ate less and less and often what she did eat she threw up. Her organs were shutting down.

My friend is not "starving her to death." They offer food and water and coax her to eat and drink. I visited my grandmother when she was dying. She too did not want to eat near the end. My mom coaxed her to take a little ice cream.

My friend's wife is a nurse. They are kind and generous and would never do anything to hurt anyone much less their own family member. My friend sent me a video of his mother-in-law. She is lovely and gave him her hand when he asked to hold it although she never opened her eyes.

This is a man who has devoted a good portion of his life to helping the vulnerable and those "being led to the slaughter." If his mother-in-law were in a nursing home or hospice she probably would have been hastened into the next world long ago after being drugged into oblivion. I know a number of people who experienced that. My friend and his wife have chosen to lovingly care for her at home. I for one am humbled by their love and charity.

Mary Ann Kreitzer said...

Here's what my friend sent while his mother-in-law was in respite care for a few days:

My mother in law won't eat and won't even drink 2 mouthfuls a day. I hurt the one leg I use to get around on February 1st moving mom about. I continually hurt it twisting and turning lifting mom on and off toilets, bed, wheelchair, and changing her. How in the world can a 5'2" woman weighing less than 100 pounds be too heavy for me to lift by myself? Although I think at times she's not being nice, I know it's not personal with her; pushing her head forward bending over in a "C" head almost to her ankles and she has high blood pressure too. Impossible to pick up as she goes totally limp while you're thinking, "I can do this. Mom only weighs 100 pounds."

But she goes limp with her arms all over the place and her head in your chest making you stretch out your arms and attempt to lift her from 3 feet away.

So we had an opportunity for Respite Care which picked her up in an Ambulance and took her to a beautiful small building with a really nice spacious room and great view, but not with us.

We've rested some but we are very concerned with Mom. We know as well intended as they might be, we Love Her More and would try to feed her all day long until she finally eats a Chocolate Snack Pack and a few droplets of water that we can force through a tiny bulb syringe that looks like a vaccine needle.

If Mom lives to return home that will be a miracle and, although we really are praying for God's Will to be done for everyone we are praying for nightly, we really can't see the purpose of mom staying alive. Mom's 5 children got mad like 45 years now and they don't visit; just my wife her middle child whose beautiful heart I saw almost 19 years ago when we married.

God LETS bad things happen so good may come from it.

I can truthfully see the good as my wife and I struggle everyday physically, emotionally and spiritually with Mom. We realize that Mom is suffering and Mom needs both of us to calmly, lovingly and prayerfully help her every way possible. Mom's suffering is for us to love Mom more and to love each other more.

Mom is returning to us this Saturday 02/25/2023 much more frail, not eating or drinking much for close to 2 weeks now. We are preparing to see our totally emaciated Mom who is now completely bedridden and both of us to care for her all the time until her Eternity comes.

My wife and I are followers of Padre PIO and Mother Teresa (I have 2 Class "A" Icons of her at home here).

We ask God to alleviate Mom's pain and suffering and to take Mom into Heaven according to His will.

Anonymous said...

Just again would recommend boost high protein - sam's club is pretty good price and also MCT oil since brain may have difficulty processing sugar, but can process oil. If starving to death of course bedridden.

In Charlie and the Chocolate Factory two sets of grandparents are bedridden in the kitchen of the home.

I just wouldn't accept the current protocol re: aging (think of the Covid protocol/leeches). Don't think people need to be miserable just because they are old and can't take care of themselves. It is difficult to take care of one's parent in that you must face grief and your own aging and what will happen to you. Nevertheless, scripture is insistent must take care of parents in their old age and not revile them. I would try to be as joyous and rejoicing as w/a new born baby--that could have a birth defect physical or mental. Or it could be your son coming back from a war/car accident 20 years old and horribly injured needing to be taken care of for the rest of his life. Remember too just as in a coma or brain dead, people who can't communicate may be able to understand everything. You could have been born 150 years ago when no inside toilets, no running water, no gas stove, no electricity, let alone cars, tv, internet, phones etc. etc. Anyway, this too will pass (probably much quicker than you think). My prayers are w/you.

Anonymous said...

Ensure was good but it isn't as protein rich and sugar less as a drink I used to buy from Costco. The problem now that we are attempting to feed Mom higher protein foods is not so much trying to get her to eat better, its trying to get her to EAT or Drink which isn't happening.