My Mom is Stage 6 (at least) and lives in a lovely ALF just a couple of minutes from my home. Two weeks ago she came down with C-Diff (very nasty bacterial infection of the bowels) and was hospitalized for 5 days. They got the infection under control and due to the fact that she was so unhappy in the hospital, we moved her back to the ALF in hopes it would stabilize her emotionally. It did. However, the oral medication for C-Diff, Flagyl, tastes very bad and makes almost ALL food taste terrible. While Mom was only on Flagyl for a few days, it was enough to make her refuse food. She has refused food and almost all fluids since she was discharged on December 19th. Considering she was on IV fluids while in the hospital and refused most foods then as well, she has now been without foods (aside from one bite every couple of days) since December 14th. Mom is a small woman, 5' 2", normal weight about 130 pounds. She is too weak to be out of bed and hospice is now involved. I don't understand if this is part of AD or something else. How long can she survive like this? She has a very specific living will which I have every intention of honoring. Is she in pain from dehydration and not eating? She doesn't appear to be and when she is awake (rare), she is usually very sweet but is not aware of who I am. Thank-you for any comments any of you may be able to offer.
It very well could be a normal progression of the AD artsy. Any hospitalization, infection, break in normal routine, etc can be a huge set back. Her refusal to eat may be because of the taste but more likely because her body has stopped processing the food or her brain has forgotten the need to eat... both seem to come about the same time. I truly believe if she was feeling discomfort or pain you would know it. The fact that she is pleasant and comfortable says she is not feelings pain. Hospice should be able to answer any of your questions about what is going on.
It is good that you have the advanced directive with her wishes to take the burden of decision off of you at this time. I know it is difficult to watch and be a part of this last phase. It could last for a while depending on what she is taking in (which doesn't have to be much) or it may go very quickly. The food is not as important as the liquid. Her body is in control of the time frame.... but the hospice nurses can give you specific signs to be aware of to know what will happen next.
My heart goes out to you. This is exactly what happened to my Grandmother. It was a septic blood infection for her. Massive antibiotics conquered the infection but left her in the final stages of her dementia where she lingered for months. I was not surprised when Mom added to her advanced directive forbidding the use of massive antibiotics.
I am sure those that have been through this process will chime in with better information. Just know I will keep you and your Mom in my thoughts and prayers.
Thank-you for taking time to reply Deb. What you said was very helpful and I appreciate your sentiments. Hospice just started and although I have met with the admitting nurse, I have yet to meet the attending nurse(s). I seem to always be at the ALF at different times than hospice is there. I will ask that they call me next time they are there so I can talk to them in person. I'm only about 4 minutes down the road. Thank-you once again.
Last edited by artsyfartsy; 12-27-2009 at 02:22 PM.
Reason: screwed up by copying rather than replying
I had C-diff a year and a half ago. I was very sick so I can relate to how your mom must have been feeling. I am a strong woman but it knocked me to my knees.
My mother doesn't understand the need to eat either. But it is not the same story as your mother. Because my mom is a stubborn willful little thing she is refusing to go to dinner..a new developement this past week..... so at the moment she is eating one meal a day...along with a can of Ensure in the morning.
We're not ready to give in to it yet, to see if we can coax her back to the dining room...if not she will have to be transferred to the AL facility next door to where she is now.
My mom too has the directive so I understand your feelings of wanting to follow her wishes.
For us, with my step dad, hospice proved to be a G*d send. I hope you have the same experience.
I also endured C-Diff about 6 years ago and spent 15 days in the hospital. I am very strong as well so I was really thrilled that they got it under control so quickly with my Mom.
My cousin's Mother-In-Law had sudden onset AD and it progressed very rapidly. She was a little bt of thing, like your Mom, but went through a very stubborn stage where she refused to eat. During that phase she was also a wanderer. If you didn't keep an eye on Lydia almost CONSTANTLY, she would leave the house and be gone for hours while everyone searched for her. She had a bit of a mean streak at that time as well. The doctor ended up changing her medicine and those three symptoms abated. She is still with us three years later.
I hope they have a safe trip back Christie... I am on the other side of town. My Mom has had spurts of refusal to eat but those were her more stubborn moments and if she can tell me she is not going to eat and get up and walk away from the table... I figured it's just her hardheadedness!~~~
I am sure the facility can give you the number of the attending nurse. Get in contract with her and find out her schedule so you can meet with her. It will ease your mind and answer your question.
I can relate to your post. Last November my Mother began the slow loss of appetite with dementia. We took her out to dinner 3 times a week to get her to eat, and it amounted to a salad and soup. I would prepare her breakfast and coffee before I left for work.
The last week she was at home she did not even eat her cereal. I knew her body was breaking down.
She would only eat soup for dinner.
She then had a stomach bleed and I had her to the hospital via ambulance.
In the beginning she ate, but slowly refused even soup. Thankfully she had a Living Will. I met with her doctor at the nursing home, and she helped me understand her body was *breaking down* She slept all the time.
She was so lethargic the last day she was alive, and I asked God to call her home. She had lost all her dignity. She passed peacefully in her sleep.
I wish you the best as you care and watch for your Mother. It is so frustrating to see vibrant women become so defenseless when Dementia finds them.
I keep needing to get up and do my chores while she's asleep but can't pull myself away from the reading/learning. Boy did your post hit home. We was at the hospital for a bacteria infection of the blood the day before thanksgiving for a 24 hour observation. She's also stopped eating and getting her to drink is just as bad. It's wonderful to have so many hands to hold while going through this.
Hey, Artsy (or do we call you Fartsy?) Sorry I can be a bit irreverent at times.
Sounds like the normal progression of the disease. My wife and I had agreed years ago about life support, etc. So it made my decision easier when the time came. She was only 53 when she died in March, and it was SO sad to see her waste away. But her body had stopped processing food even if she could have eaten. And honestly, the moment she passed away was one of the sweetest, most tender times we ever had together. So don't fear it. I'm so glad I was there.
Thank-you to each of you for your recent posts. Kenbob, you may call me either (smile). Thank-you for sharing the experience with your wife. I was shocked when you said she was only 53. FAR too young. Texaslily, sounds like we are in the same boat. I spoke with the Hospice nurse today, as well as Mom's doctor, and what everyone has been saying seems to be the case. Normal progression of Stage 6/7 AD. Today my husband came with me to see Mom. She hadn't seen him for a few months. Although she didn't know his name, she knew he somehow "belonged" to her. For the first time in a week, Mom drank a small glass of juice and then took her meds from me (the ALF staff was unable to get her to do either earlier today). I realize this was just one of the "ups" out of the "ups and downs" that are happening, and will continue to happen from here on out, but it was pretty amazing the way she reated to my husband. She always liked him. The nurse said she simply doesn't need or want the nourishment and that will most likely not change. I am at peace with what is happening, for the most part, because Mom is comfortable and seems content. Lizzard220, thank-you for sharing your Mom;s story and for your kind wishes. Thanks to all of you. All the best, Christie
I guess it depends on your definition of "help" Kay. Being of sound mind and body and having watched her Mom (and several other family members) die of Alzheimer's... my Mom signed an advanced directive forbidding the use of any extraordinary measure and that list includes feeding tubes. For her it was about Quality of life not Quantity of life. She took the decision out of our hands. She does not want to just stay alive. To her that is not living. I believe as she does and will not only follow her directive but have one of my own. I don't see it as letting someone starve to death but as letting their disease take it's natural course. As she told me repeatedly.... be kind and let me go.
Christie. Yes, we all think of dementia as an old-people's disease. However, some forms (my wife had FTD / Pick's) are first diagnosed usually early 50's - sometimes even earlier than that. And that's usually after several years of slow decline prior to diagnosis. I can now look back about 8 years or so and pick out the symptoms now that I know. It is pretty rare, and she had an even rarer version - among 1% of all dementia patients according to the research hospital in Birmingham. (UAB)
I'd never even heard of Pick's till two years ago. Now, I'm pretty much an expert, I guess. We are pretty sure that her grandmother had the same thing, but she was in her 80's when she died. So, since it may be heriditary, who knows who is next. But we can't sit around worrying about it.
Hello from England, I'm not quite at the stage where my Mum (yep we call them "Mums" over here) is refusing absolutely everything to drink, as her swallowing reflex is still (just about) intact, but coughing and choking is getting evermore frequent.
In the lack of a directive from my Mum, me, my Brother and Sister have made the decision on her behalf not to bother going down the IV or feeding tube routes. Although this is a very hard decision indeed, we figure it would probably become an even harder decision for us to stop the IV/feeding tube treatment at a later stage. We would be the ones cutting off the life-support in those scenarios.
She was recently moved from a NH where she had resided for 3 1/2 years, but since August 2009, there had been a swift decline, so much so she was hospitalised on 19th Dec and discharged on 24th in an even sorrier state in spite of being hydrated via IV.
She has been in her new NH since 25th Dec, Doctor came out to see her in her new home and basically gave her 2 weeks to live, since then she has been hanging on on around 250-300mls total fluids/purees a day; as anyone who has been though this will testify it is hard work getting somebody to drink, especially when you suspect the patient his/herself is "giving up".
But, as long a I raise a glass to her lips and she drinks even very little, then I will not deny her that basic human right. IV's and feeding tubes however, are a different matter, and not routes I would be happy choosing for the afore-mentioned reasons.
That said, we can only do what we think is best in our own individual cases.
Peace to all who are suffering either directly or indirectly as a result of this awful condition.