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My dad and I have taken care of my grandmother for probably the last 10 years with Alzheimer's. We have taken turns with Dr appts, financing, personal care, etc. We had to put her in a nursing home the first of August. Since going in, her health has severely declined. She has almost completely stopped eating and drinking. She refused her meds. The staff has told us that they are concerned themselves about her decline. I have met with nurses and Drs and the head of her Care unit. We had her admitted to the hospital yesterday to take a urine sample for a UTI which came back with only dehydration. We are trying everything we can think of to get her to eat and drink and nothing seems to help.


The Dr told us last night we are at the stage we need to decide if we want a feeding tube (which we both know she will pull out) or what we want to do if her heart stops beating. I guess he is telling us in as nice a way as possible, we should get the family prepared and make some hard decisions. He and I are both POA and I will never go against what he wants. I don't know how to comfort him because he is already dealing with the heartbreak of making the decision to put her in the facility. He feels guilty even though I have told him that he had done all he could do for her as long as he could. He is a single 63 yo man who has single handedly handled her in home care by himself (except for the home health nurse that came in for a few hrs a day in the last 4 yrs). We take her any and all foods and drinks we think she may eat but more times than not, we throw it away. Any suggestions?

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This is a difficult time for you and your dad.
I hope you are not upset by what I am going to say. And what I am going to say might be difficult to read/hear.
I cared for my Husband the same way you and your dad cared for your grandma.
And just like your grandma he declined over the years, and the last month or two he seemed to decline more rapidly.
I would encourage you NOT to have a feeding tube put in. I say this for several reasons.
1. People tat are "actively dying" do not feel hunger or thirst as we do. So when someone stops eating or drinking it is best not to force it.
2. As a person's body begins to shut down they no longer need food to keep their body going. As the body shuts down digestion slows or stops so any food that is put into the stomach will not be digested and may either sit in the stomach causing discomfort or it could move along and become impacted in the intestines. This will cause pain and require surgery to correct and at this point your grandma would not survive surgery. Or the food in her stomach could be vomited and that would probably cause an aspiration pneumonia.
3. Some people with dementia do not understand "things" that are inserted so will often rip out IV's and things like feeding tubes.

I also encourage you not to allow CPR or other "life saving measures". At this point your grandma is very frail and the pressure required to do CPR would probably break every rib in her body as well as crack her sternum. If she survived this would place her in unbearable pain. And the chance of surviving is slim.
As to a ventilator I would also discourage you from placing her on a vent. She would probably remain on a vent for the rest of her life. And it would not prolong the life she has.

I would encourage you to contact Hospice. I am surprised that the Nursing Home did not suggest this when she became a resident. You and your dad will get emotional help, your grandma will get a CNA that will come in and help her, she will have a nurse that will come every week and the team will make sure that she is not in any pain.

What you can do for your grandma is be there, hold her hand, tell her that you love her and that you will miss her but you and your dad will be all right.

((Hugs)) to you and your dad.
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Marhall57 Sep 2019
Your advice is spot-on, Grandma1954.
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So sorry for all the pain. I know that you recognized the decline was dramatic when Mom/Grandma had to go into care. And apparently it is. The doctor now wants to know how heroic the measures should be. Your choice right now is palliative care and hospice (much more care for grandma with that latter) or to try to prolong her life. I know her son must be somewhat aware what she would want. Would she want a tube feeding with possible restraints? It means a tube down her nose which often gets pulled or displaced and can then feed formula into the lung causing pneumonia and death OR a gastric tube implanted surgically, sometimes needing restraints so it cannot be pulled out. The formula almost always causes severe diarrhea; bedsores that go down to the bone can be the result.
I don't know the age of Mom/Grandma, but it is clear she is trying to make her final exit. She is not hungry; she doesn't want food any more. We get tired. As a nurse I tried to tell tell 1000s of family members too young to get it that we get tired. Just tired. A life lived, and we are ready to go.
I think perhaps think what you would want for your last days. I so fear anyone doing this to me that I have written it out word by word by word "No artificial food or fluids".
I am so sorry. We are never ready to lose someone. But were we none of us inadequate or human we would still have to see those we love die. It is the life cycle. Give her the dignity of not having her last days be forced feedings and forced thinking of the food she no longer wants, would be my advice. Hold her hand and tell her of all the cherished memories you will never forget. Tell her you love her and value her and would do anything to make everything fine for her. Just hold her hand. At the end, as we tried to do that my lovely Aunt even got tired of THAT, turned to me and my bro and said "We don't have to talk. Just hold my hand". They get so tired. They LONG for the release.
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I'm thinking that the same reasons that your dad had to put her in the home is the same reason that she's not eating and drinking - it's just the end of the road. The average age to death after an Altzheimer's diagnosis is 10 years.

Please look up the ted talk or tv segment on Atul Gawande's Being Mortal before you make any decisions about feeding tubes. It starts a long cascade of interventions that create distress in the elder without doing anything positive, but they make the family feel less guilty. You know that she will pull out a feeding tube already. I'm opting into allowing mthr's body to shut down when it wants to so I don't cause her any more distress. Hugs!
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I'm so terribly sorry for what you & your Dad are going through right now.

I want to tell you a story in the hopes that it will help you process the fact that you made the right decision to place Grandma in a community where she is being cared for safely.

I used to be a care giver, in home, for a married couple in their late 80's. Jim suffered from Alzheimers, but his daughter refused to place him in a Memory Care or Skilled Nursing community, and insisted he'd be 'better off' at home. Well, Jim wandered out every night, in spite of everyone's efforts to keep him inside. One night, he wandered out at 2 am and fell, hitting his head on the concrete curb and suffering a subdural hematoma. He wasn't found for 2 hours. EMTs finally got him to the hospital, but he passed away shortly thereafter.

That's what easily could have happened to your Grandmother, had she stayed home instead of going to the nursing home. Think of how awful you and Dad would feel if THAT had happened? You need to assure your Dad he did the right thing, and it isn't the 'nursing home' that's causing her decline, but her disease, and it being her time to go. There comes a time in this disease process when it's easier, I think, to say goodbye than it is to continue to witness the dreadful symptoms for another minute, or for the sufferer to endure them.

You may want to call Hospice in now to assure her comfort during these final days.

There is nothing to say that will ease the pain of a loved one passing, but you and your Dad need to understand this is the cycle of life, and nothing either of you have done 'wrong'. Please be sure to ignore comments that suggest the 'home' is what's killing her........it's the DISEASE that's doing it, not the place that's caring for her.

All the best of luck to you and your dear Dad.
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disgustedtoo Sep 2019
Hard as it might be for dad to accept, you both did a GREAT job taking care of grandma for TEN years! Please tell him that often. While it pains many to have to throw in the towel and place someone in a facility, oftentimes it is the only option. We can't be there 24/7 and as lealonnie1 related, think of the alternatives if she wasn't put in a safer place!

Given she has had Alz for at least 10 years, you had a great gift. Some don't last nearly as long. She has reached a point in the condition where desire/need to eat has passed and she should not be forced. Soothing liquids to keep the mouth from drying out or getting her to take some sips of water might help with the dehydration, but again don't force it.

Hospice can be of help, even for you and your dad. They not only provide comfort care for the patient, but also for the family. Please be gentle with him and try to assure him that you both did your best and it is just grandma's time. Much as we'd all want our LOs to not suffer any dementia, medical issues, and stay with us longer or forever, sadly it is the way of life. We have no control over that, we can only do our best and you both have done that.
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What finally convinced your father that it really was time for your grandmother to go into a nursing home?

I'm sorry to lead with a question, but I wonder if grasping what happened then might be the key to accepting your poor grandmother's very steep decline now.

Your poor father. He must be feeling, even if he doesn't rationally think it, something like "look what happened - I gave up on her and now she is pining away. This is all my fault." If you can help him analyse and understand the process her body may have entered into earlier in the summer, I hope it will be easier for both of you to accept what may be an inevitable, natural, end of life phase.

How does your grandmother seem in herself? If she is not in pain, not frightened, and seems to lack for nothing then you and your father have done extremely well with a terribly difficult decision.
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Cgjivey Sep 2019
He does regret putting her in there, but she was wandering off before the nurse could come in. He woke up one night and she was outside with clothes packed and that was when he realized he could not keep eyes on her 24/7 by himself anymore and I am 40 minutes away.
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It sounds like this poor soul is getting to the end of the line. When these people are heartbroken as to what is happening with them, it is cruel to force them to have ways to keep them alive. They want to pass so they can have peace. Let nature take its course.
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Alvadeer had the right response, and I second it: this woman is tired of living. Stop torturing her, and let her go! There are far worse things than death (and being strapped down with a feeding tube plugged in is one of ‘em!) It is simple human dignity to be able to decide for oneself when one is ready to “shuffle the mortal coils,” although in these days of medical “miracles” it’s harder and harder to do!
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She's telling you that she's ready to go. If you know she'll pull the feeding tube out then don't put her through having it put in. My husband insisted he didn't want his mom "starving" to death. That's just not the case. They get very tired and sleep a lot and that's about it. Hunger pains (from what I've been told) just don't happen. My sweet mother in law had the tube put in at our request and at the time the staff told us it was the best way to go. I sometimes wonder. The only joy she got at that time was to wander the halls. She was way past that point, completely past that point. Never got out of bed and slept almost non stop. And that was with the feeding tube. I think our loved ones are telling us, enough is enough, and it sure sounds like that's what she is doing. My heart goes out to you because I know this isn't easy.
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cetude Sep 2019
not necessarily. It simply means she forgot how to eat and swallow. As for hunger pains, they simply can't communicate it...Alzheimer's is not like cancer and can assimilate food and water quite well. My mom's health radically improved with a peg tube and not once pulled at it. BUT her mind is virtually gone. Still she is very comfortable.
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Often times family members struggle with these end of life decisions because they don't want to be the one's who makes a decision that they feel with "end a loved ones life." You need to change your thinking and make the decision not based on what you think is best but asked yourself "what you grandma tell me if she was able to speak for herself?"

You mentioned that you did not think she would approve of a feeding tube, that she would pull it out. That might be her answer, maybe she is telling you that she does not want to prolong her life through artificial means. I am a Geriatric Care Manager and specialize in long-term care residents and those with dementia. I have done this over 20 years. I will tell you that most of my clients at this point in their life are ready to go.

Individuals who make a end of life decision by putting the wishes of their loved ones first as I mentioned above are not choosing to let their loved one die they are honoring their wishes. This realization releases many loved ones from any guilt they may be feeling.

There are two good books I would recommend for you, both can be purchased through the web.

The first is "Gone From My Sight, The Dying Experience", by Barbara Karnes. This booklet only costs $3.00 and it takes families through what they can expect when a loved one is in the dying process. Barbara prepares you on what to expect physically, psychologically and spiritually when a loved ones is from one to three months prior to death all the way to hours and minutes prior to death.

The second book is "Hard Choices for Loving People", by Hank Dunn. This book offers honest, practical, reliable advice and information as well as help with emotional and spiritual concerns when families have to make the "hard choices" such as CPR, feeding tubes, Palliative Care, and Comfort Measures. It is written in terms families can understand.

I have found that knowledge is power, when you have the knowledge then making the "tough" decision is easier. Both these books are great resources for families facing end of life decision making.

I wish you the best on your're journey, keep us posted.
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tiredalready Sep 2019
Thank you. We are experiencing a similar situation with my mother in law, who is in the late stages of Alzheimer's. I will look into the resources you mentioned.
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My father refused to eat. He understood and nodded when I told him if you don’t eat you will die. He wanted to go and I refused to let them put in a feeding tube. It was the only control he had and I know it’s hard. Keep her comfortable and let her pass her way
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