Prolonging suffering or enhancing life?

Follow
Share

OK, I'll probably get flamed for introducing this topic, but here goes: Since her dx, Mom has expressed repeatedly that she wishes she could die, which I can understand. Faced with the same circumstances, I might feel the same. We (her family) brought Mom's depression to her MD's attention. Several antidepressants were tried, but side effects (nightmares when she wasn't experiencing sleeplessness) required the meds be discontinued before any real benefit could be realized. (I'm currently looking for a geropsychologist to address this and other related issues.) I've come to understand that depression and dementia tend to go hand-in-hand, especially during the early stages. With her dx of vascular dementia and Alzheimer's, Mom started the Aricept & Namenda combination which supposedly, at least for some, slows the progression of dementia, but only temporarily. OK. (Visualize me cowering and covering my head). My first thought was "Erm, why are we postponing the agony?"


What I've witnessed in Mom so far is social withdrawal to hide her condition, emotional distress, mental suffering, confusion, depression, etc. Things that used to give her pleasure no longer work. The few that do are those that reunite Mom with her past, and I've taken the cue by bringing them to her, as much as I can. But as visits go by, those pleasures more and more are stuck "in the moment." Mom is unable to recall and enjoy the memory of the book, the documentary, the photographs, or the museum. How very, very sad.


At MC Mom is on a low fat, low sugar, low salt diet, which is much healthier than the random snacking she was doing before she was placed in MC; however, she complains heartily that the food at MC is tasteless. For what it's worth, I've tried the food there and found it to be quite good, but I digress. The purpose of this healthy diet is supposedly to limit further advancement of hyperlipidemia, hypertension, and hyperglycemia, which makes sense, since all of these conditions are precursors to dementia. But all of this got me to thinking. I can sort of see the benefit of prolonging the early stages of dementia, but inevitably it's all downhill. (I'm cowering even lower). Why must life be preserved and prolonged regardless of its quality? At what point do we call it quits and allow nature to take our loved ones? Dementia is a horrible fate, a cruel joke I wouldn't wish on anyone. I cannot speak for anyone but myself, but if some incurable suffering became my fate, I would not wish to prolong it, but allow nature to run it's course (with my suffering minimized as much as possible). Please don't misunderstand. I think dementia patients need a healthy diet (as do we all), and by all means, medicine administered to relieve suffering. But I'm having trouble with the concept of prolonging the agony, if only by a few months. There are many sweet aspects to life, as well as suffering. But I see death as a natural progression (yes, progression) of life. Death will hasten me to the arms of my creator where tears and suffering don't exist. But that's just me. Others make think differently, and that's okay.


I introduced this topic for the purpose of discussion, not to impose my ideas on anyone else. Every situation is different. We all have different values and a different outlook. Would welcome thoughts from others.

This discussion has been closed for comment. Start a New Discussion.
15

Comments

Show:
I've been thinking about this since moms CHF diagnosis in feb/march. I moved in with her because with dementia she can't restrict her fluids or salt. I feel I'm on a tightrope because I know that if I let the CHF, or diabetes get out of control it will be harder to care for her. I am very much of the mind that nature should take its course & ive allowed & encourage her to enjoy a beer now & again & have the chicharones (fried pork skins), even smoke until the CHF. Well the smoking in November because the dementia was progressing & I saw cig marks on her bedspread. The point is I encouraged her to enjoy the little she had left. This diagnosis CHF threw me because 7 days in ICU with mom, sleeping in a chair wasn't fun. Seeing her struggle to breath & get hospital delirium was heartbreaking on ME. She has no memory. So I'm thinking of allowing more fluid, adding once a week treat meals but it's only a moment of joy for her & possible consequence of harder caregiving long term for me. I know moms wishes, always talked about no machines & wanting to live a life. Yet she cared for her father at home,worked full time for 6 years & she restricted everything. Finally she had to find a placement when he was 92 & he passed at 93. I don't see anything good coming towards mom & all her children except me are hitting 60 & over, not in good health most of them. I cannot imagine the pain if one died first. Again painful for me longer because eventually she'll forget. So what to do? I have no idea but great topic.
(2)
Report

Mom2mom, thank you for confirming my stand. I took Fruit Loops to Dad at MC today. He likes cereal, and Diet Pepsi. He's lost so very much in the past couple of years, and his food gives him just a little bit of pleasure.
(5)
Report

If I were to do it over again, I would give Mom more chocolate. When I took custody of Mom two years ago, her diagnosis were diabetes, high blood pressure, high cholesterol and mild/moderate dementia. She was on Namenda and then memantine and something else. Her dementia progressed.

I would slap her hand away from that 10th piece of watermelon. I would dole out chocolate and cookies like they were precious gems. Bread would be monitored as were any other carbs.

In the end, she died with an A1C of 7.2 and normal blood pressure. Official cause of death was sepsis brought on by a UTI - one of many we battled.

She hated taking pills - really hated taking them. We fought over her 22 pills a day. She had chronic pain from arthritis. She had discomfort and dementia from the UTI's (in addition to her baseline dementia). She did not participate in any way in life. She was sad, she was bored, she was in pain.

If I were to do it over again I would give her more chocolate and fewer pills.
(9)
Report

Great discussion Amber!
Same thoughts go through my mind everyday! I hope more wise ones keep responding 😊Luv this site AND it's people!
(1)
Report

Jeanne, you raise some very good points.

Previous to my Mom's stint in the nursing home she had nearly died in the hospital due to sepsis and congestive heart failure to name a few things. She was so close to death during that 6 weeks she spent in hospital and later a rehab facility. It wasn't till all this came to a crisis point that I discovered her living will with all her private stuff. If I had read it before we may have made different decisions on her behalf. As it was, we got to spend one more year with her although it was spent in a nursing home. I would never have traded that extra time with her for anything but I sometimes feel like she felt like we went against her wishes. For this reason, I would advise anyone out there who is unsure of what your loved one's wishes are to find out before things get out of hand. My Mom probably should have gone over all this with us. I think she may have voiced her wishes to my late brother as he was living with her when he died. Life doesn't always go as planned I guess. Who'd of thought she would have outlived her son.
(4)
Report

Two of our encounters with health care providers might be worth mentioning. The first recommendation for a feeding tube came after treatment in hospital for bleeding ulcer. The very young speech pathologist told us the results of a swallowing test and told us about the feeding tube. She listened to my husband's objections and tried to overcome them. Then she left to update her report to reflect she talked to us about the option and we turned it down. When she came back she had tears in her eyes. "I wish my grandfather had turned down the feeding tube!"

The other was a cardiologist who was absolutely stunned that Coy wanted his defibrillator removed. He was DNR and he felt that is what that device did -- try to revive you. Doc really tried to talk him out of it. Finally he agreed that when the chest had to be opened to change batteries in a few months, he would turn off/remove the device and leave only the pacemaker, if that is still what Coy wanted. It was. When the doctor came out to talk to me after the surgery, he said, "I've been thinking a lot about what Coy wanted. I think he made the right decision."
(6)
Report

Ms. Madge, at the nursing home my Mom was at they plied my Mom with cookies, cake, you name it. They just wanted her to eat.............something, anything. Towards the end, nothing appealed to her. She used to say she didn't want to hurt their feelings by not eating these things but when we cleared her room out after she died there were cookies stuffed in drawers, you name it. I suspect one of the main contributing factors towards my Mom's death was malnutrition.

As far as prolonging life or right to die .............this topic is always such a slippery slope isn't it? Part of the Hippocratic oath is "do no harm" So, in that case as long as your parent or other loved ones are under a doctor's care they legally have to continue to take measures to keep your loved one alive. Even, if the prognosis is eventual death.
As far as these drugs they prescribe to relieve symptoms of dementia, they are probably partially to make it easier for the caregiver to handle taking care of said loved ones I suspect. I imagine if you were to just let the dementia/alzheimer's go totally untreated the patient would be even more of a handful to take care of. My Mom was on none of these types of drugs so this is just speculation on my part.

I believe in the future, hopefully, we will all have more of a say in how we want our lives to end. In the meantime, especially as long as there are idiots like Trump in power, God help us all.
(3)
Report

MsMadge, that is a tough one, isn't it? Being able to continue to transfer herself would be good for the quality of her life. And eating treats with everyone else adds to the quality of her life. Which one is more important?

Is the increasing difficulty with transferring due to her weight?

Is she continuing to gain, or has she plateaued at this increased weight?
(1)
Report

PS
Mom has gained 20+ pounds since her move to
Memory care 16 mos ago

Some of the weight gain is due to her limited mobility now and some due to the risperdal and quite a bit due to the doling out of ice cream cookies and dessert 2x a day so I asked them to cut back on the treats

The nurse replied do you really want to deprive her? I don't but I also want to keep her able to stand and transfer as long as possible too which is becoming more difficult each week
(0)
Report

My husband, Coy, had a very strong family history of heart disease. For all the years we were married he was on a heart-healthy diet, exercised, and saw a cardiologist regularly. He had a pacemaker and a defibrillator.

He had already lived to a greater age than any of his brothers, a sister, and his father when he developed dementia. It took me a while to switch gears from "fixing, preventing, curing" mode. When I sorted out that my caregiving goal was maintaining the best quality of life possible in the circumstances many decisions became easier and plans fell into place.

Coy was very adamant that he did not want "extraordinary" measures used. Twice a feeding tube was recommended. Twice he refused it. He tried out a "nectar" thick diet. He got so depressed he decided he'd rather take his chances with choking and even dying than continue on that diet. So we dropped it. He also had CHF. He weighed daily on a scale hooked up to a phone. A nurse kept track of results. Here is a sample of my conversations with her:
Nurse: Coy is up 3 pounds from yesterday!
Me: Oh that was probably the pickle he had at a German restaurant yesterday.
Nurse: A pickle! Don't you know how much salt is in a pickle? He is supposed to be on a low-salt diet.
Me: No ma'am, he is on a eat-for-pleasure diet. His LBD is a fatal disease. He is not going to survive it no matter what he eats. I'm certainly not going to deprive him of a good pickle now and then. It is good to track his weight and see when some adjustments might be needed. But I haven't agreed to keep him on a low-salt diet.

Fortunately Coy's main doctors were on the same page we were on. But I had many conversations with other care providers that were similar to the one with the nurse.

And if I am ever in a care center and someone tries to put me on a low fat, low sugar, low salt diet, and I can't defend myself then, I solemnly swear I'll come back and haunt that person at every meal!
(11)
Report

This discussion has been closed for comment. Start a New Discussion.
Related
Questions