End of life and quality of life

By STEVE KNOX   Sunday, March 21, 2010 - 8:41 a.m.

My wife received word this morning that her Grandma died. I feel relieved. I should feel sad but I feel relieved. Why? In the 16 years I’ve known my wife, Grandma didn’t have a great quality of life.

Our family visited her at a local nursing home for the past 10 years and her life consisted of staring at the wall or ceiling. She had to be fed. She was unable to verbally communicate. If she was still of sound mind it must have been maddening unable to communicate. Each time I left I would pray that she would have peace. Some called that a selfish prayer. I prayed for mercy. My prayers were received last night.

Everyone has his or her own definition of quality of life. The last 16 years of her life did not fit my definition. Yes, she was a living and breathing member of society but is it how she envisioned her golden years?

I know her children struggled with her slow decline. My father-in-law wouldn’t admit it but I know it’s been rough on him. He’d always crack a one-liner about seeing mom staring at the wall when he wanted to have a conversation. I knew he wanted it to be a funny joke. I wasn’t laughing. She’s at peace now. Maybe he can start having that conversation that he wanted. I can’t imagine not being able to talk to my mom as she stared into space. Mom and I have a bond. I need to have the verbal communication.

The next few days will be a learning experience for me. My young children “understand” death but this is their first experience with death. Sure, my son was at my grandparent’s funerals but he was too young to comprehend. It’s not the case this week. I’ll honestly answer the questions they have. They’re already starting to ask them.

I find it interesting that the health care debate rages as our family is experiencing an end of life. All the hoopla and sideshows on TV, Democrats and Republicans bicker and holler at each other, but there is one thing that we can’t debate: We will all die. For me, I hope the journey to the end of life is an enjoyable one.

Steve Knox was born, raised and landed back in Janesville. He encourages you to participate as he writes on Janesville and beyond as this Generation X guy supports his Janesville mission, global vision. Steve is a community blogger and is not a part of Janesville Gazette staff. His opinion is not necessarily that of the Janesville Gazette staff or management.

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(24)
jacko12
Mar 24, 2010 at 4:34 p.m.
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“Wise men speak because they have something to say; Fools because they have to say something.”

justme46
Mar 24, 2010 at 10:28 a.m.
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Steve, I see you have a family just like mine! I feel for you. Sometimes it is all about who is better, or wiser or richer. Just ignore it.

apple123
Mar 24, 2010 at 8:46 a.m.
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This article is very arrogant and rude. Blogged around 8 hours after she passed---this seems more of a 'attention from the community' effort than anything else. I am a relative of the 'grandma' who passed. I find it hard to judge someone's quality of life for 16 years when you barely even knew the person. 'Grandma' had a quality life, even though she was unable to communicate towards the end, the company and comfort were provided to here.

Through out the years, even if she was not able to physically speak, she could still listen. Dementia does NOT make you deaf. Like any progressive disease dementia is going to get worse over time, just as with any progressive disease (Ex-Diabetes, AIDS, Cancer...the list goes on), but the fact is over the years as her dementia progressed she was surrounded by family members who truly cared about here.

I know the her life was not a fairytale towards the end, but it was her time to be at peace and join her husband. Her 16 years did NOT consist of staring at a wall-she had the opportunity to visit with family, listen to singers at the nursing home, and listen to conversations w/ fellow residents during meals. Like I said before, DEMENTIA DOES NOT MAKE YOU DEAF.

If you are going to judge someone's quality of life, perhaps judge someone's that you actually new and spent time with. This article is an insult to the family and extremely arrogant.

janesvillecomments
Mar 23, 2010 at 1:39 a.m.
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from "The Garden of Prosperine"
Algernon Charles Swinburne

From too much love of living,
From hope and fear set free,
We thank with brief thanksgiving
Whatever gods may be
That no life lives for ever;
That dead men rise up never;
That even the weariest river
Winds somewhere safe to sea.

Badgerlvr
Mar 22, 2010 at 5:05 p.m.
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I've forgotten the author but remember hearing that "death" was like watching a ship leaving the dock. Many were saddened to see her go...but somewhere, others were excited because "here she comes." With that in mind, I hope it comforts your family.

SarahB1
Mar 22, 2010 at 2:28 p.m.
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justme46: I agree with you. billnewbie's last comment has me in tears right now.

justme46
Mar 22, 2010 at 12:09 p.m.
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This article shows that most Gazette posters do have a heart! It makes me cry reading these. I miss my parents everyday. I couldn't imagine being a little child and losing your parents. That is so sad, also.

billnewbie
Mar 22, 2010 at 11:35 a.m.
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I too lost my Grandmother in a similar fashion, Steve. She had stayed with us for about 10 days to help us out at the time of my 3rd son's birth. About a month after she went back home she had a stroke that left her writing hand side paralyzed, wheelchair bound and mute. She was alert but almost uncommunicative. She stayed that way for nine years and died at 90 years of age living those 9 years in a little nursing home in Monroe. About 2 years after her stroke my father contracted a virulent form of lymphoma. He entered the hospital for some tests and 6 weeks later he died, the last 3 days he was comatose. My nine year old (at the time) daughter came to see him a few hours before he died. She squeezed his hand and said "I love you Grandpa". Before long a tear formed at the corner of his eye.

The next time I saw my Grandmother, the doctor had said not to tell her about my father’s passing, that she may not be able to handle it so my aunts and uncles agreed and asked us not to tell her either. So we didn’t. But she knew something was wrong. She grabbed my hand and moaned, she stared into my eyes with a questioning look. I pretended not to know what she was asking for. My father visited her very regularly and now he suddenly stopped coming to see her. Her body didn’t work, her brain was seriously damaged, but her human spirit with was alive, alert and wanted to know what had happened. We never did tell her about my dad and finally she stopped asking in her limited way, but she knew. Within that disabled shell she was the same human spirit she has always been.

A crippled body does not damage the spirit that lives within it. It cannot because the human spirit is not flesh and blood, it merely lives within a flesh and blood body. The proof is in cases just like these. And that gives us reason to hope that death is not the end but a beginning of a new life. We grieve the losing of our loved ones but we take heart in the hope that the loss is temporary. That hope can offset the grief.

SarahB1
Mar 22, 2010 at 6:14 a.m.
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NeoBartly: You display much wisdom in your post. Thank you.

NeoBartly
Mar 22, 2010 at 5:13 a.m.
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Condolences to your wife.
justme: Also I would offer such condolences. It is a very difficult thing to deal with. I too have been around what I call too many deaths. It is not something that can be taken and forgotten easily. It is understood.
To anyone that is facing such issues of faded alertness, do understand that this is a very natural and final time in that loved ones life. Respect them and do not humiliate them. I ask that total patience and vidgulence be granted to you, as you deal with that path. I have wittnessed and watch a many others deal with these issues in a very non-complimentary way. Granted, it may have been their uncontrolable survival instinct, the way they emotionally-out of control could handle it to their best? But I must say, I am not impressed with the negative maner that they conducted themselves.
The Elderly deserve more respect. The greatness that they contributed to our lives as we were born, and grew to be adults with their guidance, and wisdom. They deserve more.
The advice I would like to share most, for those whom are too smug and non-caring: What comes around, goes around.
Those whom are doing their best during trying times as these are, remember the goodness and graces of your loved ones. Cherish and share as much time as one can, their may still be some valued information to gather. Peace.

SarahB1
Mar 22, 2010 at 2:12 a.m.
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Wicket has it right. As a registered nurse, I have always followed what I was taught in school: The family needs to know that the hearing and sensation of being touched are the last things to go. Please don't be afraid to touch and speak to your loved ones as they pass. I have seen how these actions comfort both the patient and the family member. One last note; I have been with many patients when they pass from this world into the next. Never have I witnessed any of them in pain at that moment. I am sometimes afraid of the process of dying, but I have no fear of the moment of death. My condolences to Mr. Knox and his family.

Badgerlvr
Mar 21, 2010 at 6:25 p.m.
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JohnWicket: Nice post!

justme46
Mar 21, 2010 at 5:47 p.m.
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That is so true, Ms. Wicket. My parents were the same but I think they realized when the grandkids were present.

JohnWicket
Mar 21, 2010 at 5:45 p.m.
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It is hard to watch the elderly lose their minds and memories. As our grandchildren visited the elderly great grandparents and looked for responses but got none, it became a learning experience. Both for her birthday song and last December for a Christmas program, grandma appeared to be sleeping. Our granddaughter and her nursery school sang their little hearts out for their impressive and entertaining Christmas program at St. Elizabeth's.

"But grandma didn't even open her eyes to see me and didn't listen," my four-year-old granddaughter complained, but I reminded her that she may not open her eyes or talk but her spirit sees and hears us.

Although those we love may seem unresponsive, never assume at some level they aren't watching and listening. Ms. Wicket

justme46
Mar 21, 2010 at 3:13 p.m.
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How old are you? duh, went out a long long time ago.

justme46
Mar 21, 2010 at 2:26 p.m.
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You know, if you don't want to read an article or post on it, no one is forcing you to! Abc, you need to get a grip and not think every article is in the negative or is linked to something else. Layoff and go see if your glass is half empty or half full!!!

justme46
Mar 21, 2010 at 2 p.m.
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The nursing home, Alden Meadows, was the worst place in my eyes to put my parents. But, their insurance would not cover anywhere like Cedar Crest. This is sad, because a lot of elderly folks cannot afford luxury at the end of life. My parents just gave up living. One thing I will always remember though..After about a month there, my dad got mad because they did not serve fresh eggs (institutions have to use the powder kind) and he ran away to go to the store. What a gem he was! I hope when I go, it is in my sleep, my parents both suffered and the help (with their low wages) mostly had no hearts. They were there to do their job and that was it.

justme46
Mar 21, 2010 at 1:56 p.m.
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I grieve with you, Steve. My parents died a year apart and I watched them both wither away and take their last breaths. They were put into Alden Meadows in Clinton and when they were, it made my dad so sad, that shortly after, he died. I think he just gave up, he was almost comatose for 5 days. He had a DNR, do no resuscitate, but was kept on oxygen til the last day. My mom and myself and 4 sisters urged the home to take him off the oxygen and within 15 minutes, he was gone. Very hard to this day to not remember that awful picture of him in his last minutes on earth. He actually spoke one word, "mama" before he died, I thought he could see her in heaven (my grandma). Then a year later almost to the day, my mom passed. She had been on coumadin for years and it was stopped for 2 weeks so she could have a cancerous spot removed from her nose. The next thing we knew, she was also almost comatose but thankfully passed in about 5 hours of becoming this way. I still think to this day she would have lived being put back on the coumadin, I think her blood got so thick, it would not circulate. I miss them daily. My dad was 78 and my mom was 79. I lost both parents at the age of 40. I know a lot of kids lose parents younger than that, but maybe they have the chance to not picture the parents death on a daily basis.

TommyRay
Mar 21, 2010 at 1:20 p.m.
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My condolences. Quality of life is an important aspect, as is comfort. Not being in immense pain or going through alot of suffering ranks highest in forming such opinions, with ability/disability running second, in my own opinion. The consequential emotional or financial suffering of family or friends should not weigh into it and would be a selfish motive, indeed. But being relieved that a difficult situation has come to a natural end is bittersweet, and I fully understand the feeling. Especially when you're glad that your wifes suffering is being significantly lifted from her. After all, you love her, and I am sure you shared that suffering in a myriad of ways. Perhaps it's time to drudge up some older, happier times to refresh good memories.

moving3ways
Mar 21, 2010 at 10:05 a.m.
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Mouse...
Everyone has their ways of processing their grief at such times. Kudos for Mr. Knox processing his own thoughts so he can be supportive to his wife.

Mouse
Mar 21, 2010 at 9:16 a.m.
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I agree sometimes things are for the better, just think you were a little quick to post this blog. ( Spend time with family)
All the hoopla and side shows right now, might result in help for someone that can't afford the help needed in their suffering time.
God bless Mom!

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