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?
Dad had a good appetite until someone in the hospital decided he was "packing" food and needed to go on a thickened liquid, pureed diet. Not very appetizing. You didn't say if your grandmother can feed herself. My father had a stroke in rehab and had to be fed. The home was worried about aspiration so, when they couldn't get him to the dining room, they no longer offered him food/drink. Not even ice chips. I still think a person on hospice should be offered food and drink; just not required to eat.
U get it. Eye hope.
Anyway, that would be very uncomfortable for a person trying to pry out a feeding tube. and the looks on mom's arm where the IV was, was not a pretty site.. I didn't look down elsewhere... U tube.... but I can imagine that was painful...
Just think and know where your LO's (lousy one, lazzy one, lol one, limbo one.. you decide what LO stands for) mind is at, and think about what if that was you... and you didn't know what was going in and out of your body, foreign objects... Not understanding what or why those things are there.... All you know, it's not natural... it's odd, and uncomfortable... maybe more worse than this: You have a cast on your leg....for a couple weeks, and then..... YOU GET AN ITCH!! And you cannot reach it... and it just grinds on your nerves... THIS ITCH... What can you do about it?... If you could, you would rip that cast off and SCRATCH IT..But you can't do that... It's a Cast. and it must be there to heal your bones, and You have the COGNIZANT mind to understand THE CAST MUST STAY ON FOR A BIT LONGER...
so now your LO( use these letters as you wish) has a mind that DOES NOT UNDERSTAND that these foreign things on or in the body MUST STAY THERE..So what does LO do? LO removes such items from body, because they do not feel good... IT COULD BE THAT ITCH... and NOT UNDERSTANDING, THEY SCRATCH THE ITCH or remove Article that is blocking them from scratching the itch...That's all that is in the forefront of their thoughts.. This issue that is causing them from SCRATCHING THE ITCH.
In my opinion, sometimes feeding tubes are not viable...especially, in a person with ALZ.
GN
She didn't say because of this, or because of that...
Only said when the body refuses to eat... And she said this happens in NATURE all the time.. The body doesn't want food..or drink...
My FIL had esophageal cancer. He had a horrific operation, God Bless Him, so he could be around a bit longer for his one and only grandchild...He kept telling my MIL his body is different,..(obviously, he took out part of stomach and throat and reconnected it...very painful...) and he doesn't want to live like that.. Yes, he did have a feeding tube and he did not like it one bit... and it was horrible...
Then I knew a person whose daughter was born early.. she was quite young, and the feeding tube saved her life... She had a scar, and her mom reminded her that scar saved her life...
Weighing in the ideas of when to use a feeding tube.... For me at my age, I will say no to the feeding tube... It's okay... I do not want to be hooked up, and it may or may not work at my age...
LET's give the little ones a huge chance of LIFE... Do try the feeding tube if it is almost guaranteed that it will bring health and life to a little body trying to get a bump start.... My age, for me, I say no thank you.. But a little one, who has a huge chance to survive 15 years or more.. I SAY YES... give that lil one a chance. Who knows she could be the person who solves much of todays issues... Tomorrow..
I won't say President.... That is one thing I do not talk about to anyone... YIKES....
Get her out of that facility, and just bring her home, and asap, sign up with Hospice....they are an excellent support system, know all about how to keep someone comfortable, and they will show you how to do things, like keeping her clean while bedridden....they will provide various equipment to help her as much as possible to move around, and they won't force her to take drugs, or food, etc....hospice is strictly for the terminal patient, and are and excellent support system all around.
If she's done eating, don't force her to eat as her taste buds may not be working properly, or internal organs may be shutting down, ok
Please just take her home, whoever's home that could be, and just love her the best you can, and don't sweat about food or drugs....listen to your heart/conscience, and listen to Hospice!
I pray she is saved by Jesus Christ....many times, getting saved brings a calm, comfort and peace, knowing for sure where they are headed when they leave behind their bodies. Christ as Savior makes all the difference!
May God be with all of you. Shalom. 🌺🕊🌺
AFT Adult Failure to Thrive (FTT) is a real diagnosis; this is no guilt trip; same with her being in a NH that could have accelerated this. Feeding Tube is suggested by some not only for food but to give medicine as well. I'm sorry you feel that the other poster and I are trying to lay a guilt trip on th OP
Thank you for your comments Barbin Brooklyn(?)
There is no reason on God's green earth to warrant the placement of a feeding tube in a woman whose dying of Alzheimer's, a fatal disease, for the past 10 years. Medicine can obviously be administered in other ways without the need for a feeding tube. When food the woman has always enjoyed eating is being repeatedly refused, she is no longer wishing to put food into her body and a feeding tube is Force Feeding someone whose body is preparing to transition.
We have people saying Oh Just Take Her Off Hospice To Put In A Feeding Tube And Then Put Her Back On Hospice Afterward. Easy peasy. Does this not defeat the entire purpose and premise of comfort care at end of life that hospice provides by actually allowing the person's body to die naturally, and without medical intervention????
Psalm 147:3
“He heals the brokenhearted and binds up their wounds.”
Love,
Llamalover47
I care for Our Mom with Alzheimer's.
Her Dr., told me that Hospice could help, not just for end of life care. But, because Alzheimer's is not curable, Hospice can provide some help. I have Mom at home with me, but, Hospice also provides CNAs and Nurses , to go to a nursing facility. This might be something for Y'all to think about. They are Awesome Caring People.
Prayers for Y'all and Mom. Hugs.
My Team Hospice helped me,,, unfortunately mom declined on their weekend off... But I did find Angel... He was wonderful, and the Relief Nurse to help her go .....
Remember some people will go when LO steps out of the room... (Or when I stepped back in...)
My Dad decreased his eating, liquids, refused his pills..Dysphagia set in, then his final stage of ALZ kicked in.. I finally accepted help/assistance from Hospice..They taught me how the final stage unfolds, and how to make it as peaceful as possible for Dad..
A very hard life lesson..My daughters and I miss him every day but, we are grateful he left peacefully & comfortably, with our family and Hospice working hand-in-hand..
Prayers to your grandmother, you & your family🙏🏻
So my advice is, if the nursing home would permit it, to give her milk shakes containing a daily nutrition drink (like Ensure) with plenty of ice cream to boost the calories. And pray for her, and you and your Dad.
I thank God for that short time with my friend and her mom in the same room/facility... Made things so much better and easier.. TEAMWORK...!!!
We enjoyed every minute of it....
Medications also play a big part in a new residents appetite. So, I would recommend that you find out just what meds she is on and perhaps cut down or out those for depression or those that make her sleepy. And, when you visit, bring her favorite foods to eat.
Not knowing just how old your grandmother is, I can't suggest whether or not you should have her be tube-fed. For my Mom, at 96, I wouldn't do it. But, then, she wouldn't want me to do it either.
I hope everybody reading comments like this makes SURE to write out a detailed living will and explain their wishes with total clarity!!! If my children or my husband were to extend my 'life' under such circumstances, I would be furious!!
My mom is 90 with vascular dementia, in a nursing home now for one year. She had only hypertension when she went in. She was still able to do some crosswords.
Over the year she has become anemic from not wanting to eat terrible food, and has lost weight, the NH staff wringing their hands because she is now hovering at 98 pounds. She hates the food and eats very little -- I wouldn't take that food to a dog fight, she has said. It's really not that bad today, mom, I say. Try eating it every day!, she has said. Well, she only weighed 107 when she came in, and her normal weight in life was only 118ish. A staff nurse suggested a few months ago that I consider hospice. She has no illnesses other than hypertension, and now anemia because she eats very little of this terrible food. I contacted hospice because eventually that will come into play. She does not meet the criteria for hospice.
Talking to my mom when I am with her at meals I explain what will happen if she doesn't eat -- that she will eventually die, and how do you feel about that? Her head is not in that mode. She also refuses meds at times. Some nurses crunch meds and mix with some type of mush. Well, if she doesn't feel like eating at that moment, she's not going to eat the mush. But maybe she will. If I am there, I sit across from her, feed her one whole pill at a time and explain the reason for each pill. She takes the pills willingly when I am there. She just wants to know what's going on. It takes about 20 minutes, max.
The NH doctor started her on an appetite stimulant, Marinol (which contains synthetic THC), about three months ago. Her appetite has improved though she doesn't pig out. An added benefit is, her mood has improved.
She is pleasant when I visit. We talk. Sometimes she is nonsensical and at other times she is quite lucid and entertaining. I lay down on her bed with her and we listen or music or chat.
When the time comes that she REALLY won't eat anything at all, and really refuses to take any meds, I will embrace that time. We will never consent to a feeding tube. A DNR is not in place at this time. But until that time, I am glad the doctor recommended an appetite stimulant. I am also glad with his recommendation of Marinol instead of other textbook choices...
These are some considerations to think about after your mom has been in a NH for two months.
I'm very grateful to the Lord that I was able to take her with me to our place, and I had a few years with her where we still had some happy times together ....but, as the end neared, it became very hard for me to watch her as she slowly began to slide into decline.... basically my life is ruined because I lost her and really cannot live without her.....but, still, I was able to be with her and minister to her, with Jesus help, until she breathed her last. This is by far the hardest thing I've ever endured, and Hospice was there for us...they are WONDERFUL....and to this day, I still attend the grief meetings offered by Hospice, and probably will continue to do so. They have been a great support to me in my deepest and darkest grief. God bless the Compassus Hospice we have here in White Mountains of Arizona.
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.
2. Where does your grandmother stand emotionally? Is she still glad to be alive? Is she still communicating and responding to her surroundings in meaningful ways? Can you still make her laugh?
If NO: is she receiving antidepressants or therapy of any kind? Is music being played for her, is she participating in any kind of crafts, are therapy animals visiting her? These might help restore her interest in life. A good social worker will know what resources are available for her.
If YES: great! Enjoy her company as much as possible while this is still the case, and keep feeding her easy things, like milkshakes (with Ensure mixed in) if you can.
3. I am becoming a believer in palliative care, also called hospice, a type of care that can be provided either in a dedicated facility, in the nursing home, or at home. I've learned that modern hospice is NOT just about being comfortable while waiting to die -- many hospice resources pursue the possibility of recovery, as well. I'm looking into it now for my own mom, and I am told that the idea is to provide warm, personal interaction and intense support for the patient's general comfort in both body and mind. The goal is to either help the patient recover if she can, or help her pass as gently as possible.
So if you think this kind of care would be helpful to your grandmother, don't be afraid of the H-word -- people do recover and LEAVE hospice these days. You and your father would not be condemning her to death, but giving her a better chance at either recovery or a more comfortable passing.
My heart goes out to your family... I hope the very best for all of you, whatever that may be.
I take notes at every visit. I am on my third note book. Over the year the notes have become more extensive. I also make mini voice recordings. There is a reason my mom doesn't want to eat, and it's not because she is ready to die. The food is truly crappy! I am so glad of the day I decided to nap with her because it opened up a whole new thing for her. And me. Yes, she has dementia and has lost her memories. But she is aware at times when my visits have been less. And now she asks if I want to take a nap. At times I say no, she comes back with -- you know you want to. What she is saying, IMO, is that she wants me to lay down with her. Last visit she said, "I like it when you visit me. It makes me feel more at home. Do you really have to leave?" Again, my mom is 90, with vascular dementia.
She has pulled her IVs during hospital admissions. I know she would pull a feeding tube.
To your Mother credit she is saying quite loudly I have had a enough. I strongly suggest you allow nature and God to do what it does here and NOT use the magic of modern medicine to prolong it. Like it or not your Mother is not going to heal or recover from Alhiemerz (bad spelling) Unfortunatly this is not something that will pass and in XX number of days or Months she will be back out there living life.
I am surprised your Dr is asking what to do if her heart fails. Have you not done a do not recucitate document? If you want to let her go you need to do that. Because with out it the EMTs will fight to keep her alive and in some cases do more damage in their work to bring her back.
You and your Father have spent 10 years caring for your Mother that is quite honorable and the right thing to do. It is time for nature to take its course.
Gods speed