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?
After my mother entered a residential care center, I visited her every day to help her with her supper.
She loved sweets, and often a cream cheese and jelly sandwich soaked in fruit flavored yoghurt provided lots of calories, plenty enough for her to maintain body processes.
About 3 weeks before she died, she began using her energy to reject feeding. She was nonverbal, but vigorously pushing my spooning hand away and turning her head away from me conveyed the message.
After just a couple nights of failed trials to get her to take food, the care staff suggested that I let her refrain from eating if she didn’t seem interested.
I complied, and at around the same time, hospice became involved. She died about 3 weeks later.
I would never have permitted tube feeding, knowing that at 94, the risks and discomforts of the procedure outweighed any perceived benefit.
Does your dad know that “the heartbreak of making the decision to put her in the facility” was probably the very best thing he could have done? “Guilt” is a useless, unhelpful, discouraging luxury that no hardworking, generous of spirit caregiver can afford to waste time on. You and your dad did your very best.
As POAs you and your dad have the right to do the research on the 2 issues (feeding tube and cessation of heart beat) that you might need to consider if necessary, but please consider also- having had dementia as long as she had, some of the processes now occurring may also be a natural part of the cycle of her life.
There is very little reason to think that your LO would have fared better at home. Be at peace with the loving presence you are now in her life, consider and trust what her medical specialists are telling you, and be at peace with all you have done for her in the past and are doing in the present.
Hugs 🤗
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.
I am in tears for you three. (It might not be all about you guys, it is probably all about me and my mom and the obvious end that is coming for her....at 96 years old.)
Their generation did not get to enjoy candy and the "good stuff" since for some people in the depression or after, other essentials took over. How wonderful at such a hard time in your life that you can reach out to others, offer THEM encouragement, and suggest a few things that we sometimes forget. If you find yourself a spare moment while you are by her side, I (we) would love to hear the 3 or 4 favorite things about your grandmother...
Kate
I'm sorry for what you're going through and I just went through it with my dad. He passed away yesterday and was 84. In July he was admitted to a nursing home. This was after almost a year of being bed-bound and my 76 year old mother could no longer take care of him. It was taking a toll on her physical and mental health. It was a two year fight to finally get her to admit and feel comfortable with putting him in a nursing home. Dad had a DNR and he was hospice. He decided that he no longer wanted to be treated for anything so that's why he made those decisions. He did lose weight after entering the nursing home. Remember that some of this is because the person goes from being at home where they have access to food 24/7 to living somewhere that restricts how often they eat a day. They serve three meals a day - no snacks in between- and sometimes the patient doesn't like what is served and they don't eat it. So some of that weight loss is simply a result of a new more restrictive eating schedule. My dad was always a picky eater anyway. When we visited dad, many times we took him a meal so he at least got some variety in his diet and something that actually tasted good. ;) Two weeks ago dad started getting pain in his abdomen. Because he was hospice basically they could not treat him much other than give him pain-killer. We asked him what he wanted to do and he said he wanted morphine for the pain and he was ready to go. Honestly, my dad's quality of life had been gone for the last ten years. He spent most of that time on a walker and only left the house to go to a restaurant. A year ago he stopped walking all-together. His life was eating and watching TV. Sometimes a person recognizes that their quality of life is gone and they are tired and ready to go. As a caregiver, you can only do the best you can do and that's all. It's not your fault the situation the relative is in. You deserve to be able to live your life and take care of your health as well. It's easier said than done but please don't feel guilty about putting her in a home. If she has decided that she is ready to go then that is her choice. Just keep her comfortable and as pain-free as possible. Bless you and your family.
Grandma woul dno tWant This, may even be Pissed, Let her die with a Drip or quietly with medication to help her Feel more Comfy. Yes, You are being Prepared, I am so sorry for you. Benn there, Done it but Didn't Do it, Only My sister had to be Forced to Decide to Pull the Plug in The End....
If you do not use a peg tube she will die of dehydration which can take two to three weeks even under hospice care and is a very ugly death. All I can say about mom is that her health has been radically improved, not been on a single antibiotic since the PEG tube was put in as sufficient nutrients and water is given, and she is comfortable. I do not regret having it put in.
Now I DID have to revoke her hospice to get it put in. NO BIG DEAL. Just sign a paper and it's done. Her regular medicare/supplement paid for the hospitalization and peg tube placement, then upon discharge she was put BACK on hospice. None of the hospices will tell you you can do that--I discovered it after exhaustive searches. Yes you can do that.
A PEG tube should be a VERY LAST RESORT. I was feeding my mom before that and it took infinite patience (over an hour to 1-1/2 hours to feed her). When that no longer worked, I went for the PEG tube. DO NOTE not a single nursing home will take that kind of time to feed a single patient. You have to do it.
When my MIL was going through her non Hodgkin’s lymphoma treatments, she specifically stated that she did not want any feeding tubes.
She lost a lot of weight. For awhile her oncologist had her taking ensure with ice cream in it. Then she lost her appetite like your grandma. She also said that food didn’t taste the same to her.
She was in remission for five years before the cancer returned but her appetite wasn’t very big at any time.
Again, I’m sorry. It’s heartbreaking to watch.
The can assign a whole team, from doctor, to 3 nurses, someone to come in and clean her, and wash her, and make sure she is comfortable. and a chaplain, or someone to talk to. Chaplain, does not equal end of life....
These people are busy. and if he canhave a part time help, say from salvation army or a legit adult day care place, ask around. Social services in the hospital may have a list of people....
Feeding tubes = if she is out of it, and she just may pull that thing out. Not good, and that means it is uncomfortable, possibly painful, and she doesn't like it, so don't do it.
Give her her favorite treats. and add water.. If that doesn't work: Just focus on being there, music, fun movies, story time.. sneak in a teaspoon of tea, juice, or gelato.. Anything sticking into the body would be uncomfortable especially if they are confused. That happened tomy mom, pulled all the IV'S our, and the urine tube.. NO TUBES... was in her POLST N DNR.
PLEASE TELL DAD; YOU DO NOT HAVE TO FEEL GUILTY ABOUT ANYTHING. GRANDMA HAD A WONDERFUL LIFE BECAUSE OF YOU. YOU ARE NOT GOD. These bodies only last a little while; some longer than others. PLEASE NO GUILT!! I AM DOING THIS STILL. I feel guilty. I should have done something else. What? I don't know. It's all a mystery. Please MOM Forgive ME. I think she has.
Instead, dad can thank grandma for the life she has given him and how blessed he is to have her in his life. Turn it around. It may be time for her if she's not eating. and maybe she is holding on, because of him... So do bring in the chaplain, or your pastor, or whoever, do your thanking to her, and how much you love her, and if it's the right time, then it is okay to rest and go now. DEATH IS OK. We here on Earth feel the guilt, and we feel the loss. They are looking down at us laughing and smiling. When I get down, and I ask for signs, my dad, mom or brother will give me something. If I need to actually get something done, they will let me know... Do not wait.. stop and finish what needs to be finished now. Yes maam. When dad died. he was giving me signs everyday practically. I could hear his laughter. He was an atheist.. don't know how God changed him, but he let me know where he was, and he was happy. I could tell you two wonderful signs he showed me... I will always remember that. So personal.. My mom had signs when her dad died. That was beautiful.. I was upset I missed it,she had to go home, and could not afford to take me..... I have vivid memories of that moment. one ofmy Best friends made us a quilt that resememble that day. with mom name, my name, and my childs on on the back of it...
She is an artist.
If family are around, play cards, talk with her tell stories, you don' t have to be quiet. music, happy vibes. really... let her relax in a happy enviroment. that's all she needs. heck, you may even want to make her a cosmopolitan. and give her a teaspoon. do you have special time or moment with her? A fun one? Make laughter.
In both cases, they pulled out of it. I went into extreme adult nutrition drink nag mode. I literally would nag them about drinking a nutritional drink every 5 mins. During the worst of it, if I could get them to drink 8 oz a day a sip at a time that was a good day. Mom took months to pull out of it but now she's back to 115lbs and eating normally again. Grandma was more abrupt. She went to being basically a zombie drinking very little and eating nothing, she would only pee maybe once a day, to asking for seconds in about a month. Now she's back to chugging anything I put in front of her. So if anything, I have to limit how much food she gets again.
I can see how a lot of people die because of this. People think it's the end and their bodies are shutting down. I have no doubt in my mind if I had left her in the SNF, grandma would have died in short order. No one there is going to take much time to feed her let alone nag her every 5 minutes. They'll bring food and put it on her table and move on. If she eats, she eats. If she doesn't, she doesn't.
I credit nutrition drinks in both their recoveries. It's sweet which people will tend to drink. It's a liquid which gives them the fluid they need. It's packed full of sugary calories that kept them alive which let them get back to normal.
We’ve been reminding her to take a bite of her other food and she’s put on 5 lbs in the last month. We’ve also been walking a mile with her and now she can walk 5 miles a week and doesn’t need a wheelchair to travel. Excellent patient care really makes a difference!
Hard not to hate sibs that kept mom sedentary, while she lost so much weight she couldn’t mentally function! She was not alert nor very responsive. She weighed 4Olbs less than her Drivers license & less than our family dog, who she now has walked for miles with, one day at a time!
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.
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.
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.
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!
I would do additional reading on feeding tubes too. From the professional material that I read, they didn't really help prevent aspiration pneumonia nor prolong life. But, they had their own set of potential complications. I'd discuss this with professionals and ask that they be forthright about the reality. If she has an Advance Medical Directive, I'd honor that as well.
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.
Is grandma still communicating with you? Is she talking at all? Does dad have an idea, or written instructions from his mom about her end of life wishes?
She may have difficulty swallowing, which can be evaluated by a speech language pathologist in the hospital.
You want to think about requesting Hospice services, which would provide comfort care for her. Letting her be, not forcing meds.
There are meds that stimulate appetite but if she won't take them, it wont help.