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dragging 10-01-2012 10:11 PM

Mom has taken a major turn
Hi all. I am back with some good and quite bad news. My mother was living in NY with a caregiver. I went back to visit her in June and although she was walking much slower I was still able to take her to Manhattan where she walked around for hours. Mentally she had difficulty recognizing me when I first got there but she wasn't expecting me. After a few minutes she realized I was her daughter. I knew at that point that I needed to have the caregiver 24/7. She has previously always refused to move to California where I live so I was trying to keep her in her apartment which she owned. Well, long story short, her caregiver let me know that she was five months pregnant and that she would only work until December. I knew then that I would have to bring her out to California and put her in AL. Well, between June and September, her caregiver said that my mother was practically eating nothing (her appetite was no what is used to be). Well, three weeks ago the caregiver called me to say that something was wrong because my mother got kind of violent with her out of the blue. She threw a magazine at the caregiver and told her to get out of her house or she would call the police. The caregiver had no choice but to leave. She came back in the morning and my mother had a shopping cart in the middle of her apartment and clothes were everywhere. She also had emptied out all of her ensure and left milk out all night. I told her to get her to a doctore right away. Turns out she had a UTI (which the doctor told me tends to make old people do strange things). She also had a rash. Well, two days later I got on a plane at 9:30 pm, arrived in NY at 5:30 am, went to her house and threw some clothes in a suitcase, grabbed a few pictures, and took a cab to the airport (flight from hell with my mother being so frail). Brought her to AL where I had already rented a room in their memory care unit (as I reluctantly decided that she really couldn't manage in AL). Rash was bad so AL wouldn't take her in until a doctor saw her. Turns out to be shingles so she had to wear long sleeve shirts and really couldn't participate fully in her new surroundings. The good thing was that she actually loved her "winter" apartment. It had a view of the mountains and I fixed it up really nice. Well, all was well for about a week but then last Tuesday and Wed. she was throwing up all day. Thurs. and Friday she was better but wasn't eating or drinking. By Saturday the AL place asked me to take her to the emergency room because they were afraid that she was dehydrated. Got her to the ER at 7:00pm. They ran a bunch of tests and the only thing it showed was that she had a bunch of gallstones and she was very dehydrated. They put her on an IV but said they didn't have any rooms available. She finally got admitted around 7:30 am. She looks horrible, she is so confused. She said she doesn't know where she is. She refuses to eat. They are telling me that they don't know if the gallstones are causing her any pain because she is not eating. They did a CT scan to see if she has had any strokes in the past 3 months to make her deteriorate so quickly but it only showed 2 small spots where she might have had a mild something many years ago but nothing recent. Before the hospital she was saying that she had to pee and she would sit on the pot but 2 seconds after leaving the bathroom she was saying she had to go again. Same in the hospital. Her scan showed she was holding 3 litres so today they put in a catheter. She doesn't understand it and is crying "I need to go to the bathroom, help me, help me". They tried to show her the tube and the bag but she doesn't get it. I don't know what to do. I am trying to get her to eat but no matter what I give her she makes a face like I am feeding her poison, even stuff she used to love. I have been at her side since Saturday night but I am a teacher and I have to go back to work tomorrow. I am afraid that if they don't make her get up out of bed she will lose her ability to walk. Do I need to hire someone to sit in her hospital room with her to monitor what the hospital staff is or isn't doing? Some discharge guy came by to talk to me today to say that she may have to go to a nursing home until she gets well enough to go back to the AL Memory care place she just moved into. I so don't want that for her and I also don't want her to end up on a feeding tube. I am tired of dealing with all of this alone. My sibling finally made it to see her tonight for around a 1/2 hour then left me a message telling me what I need to do (you need to get her to eat otherwise she will end up in a nursing home on a feeding tube)-----like I didn't already know that. Anyway, I just needed to vent because I am feeling so alone and afraid and mentally drained.

dragging 10-01-2012 10:12 PM

Re: Mom has taken a major turn
Oh, the good news is that she is in California, 5 mintues from my house and 2 minutes from my work.

Gabriel 10-01-2012 11:37 PM

Re: Mom has taken a major turn
Dragging, I am glad you Mom is finally close to you so that you can keep tabs on what is going on. I understand the difficulties of long distance care giving. In some ways it is easier when you can see for yourself... though sometimes you don't want to see.

Yes, a UTI can cause strange behavior in the elderly. When Mom or Dad would get "out of sorts" it was the first thing I checked for and they usually had a UTI. FYI... The last UTI Mom had literally knocked her off her feet. She was walking on Thursday (Pacing constantly) and in a wheel chair on Saturday never to walk again. If their cognitive abilities are on the edge of disappearing, a UTI can take them over the edge.

Any move is going to make Mom more confused. Going to the memory unit was a huge traumatic move for her. The shingles were traumatic as well. A stomach virus (which I suspect is what she had) is another trauma. I do hope they have rechecked her for the UTI... they reoccur frequently!! Then to have to go to the ER and then the hospital with IVs and catheters... Yes, very traumatic. Trauma is accompanied by stress. When she is stressed (and you know she is super stressed by this point) her cognition will decrease. If she is not feeling well... eating is not on her mind. I will say that when they refuse to eat there is little you can do except try to keep them as calm as possible and encourage them as much as possible. Offer them what might entice them to eat. But you can not make the eat.

Please give careful thought before you agree to a feeding tube. Your Mom had a progressive brain disease that is not going to improve. Each has to make their own decision but it should be done with great consideration of the consequences. If there is a feeding tube... she will have to go to a nursing home. You do have other options. Please consult with Palliative Care and consider your options.

In the condition you described I would definitely hire somebody to sit with your Mom. Someone that can monitor her care and prevent her from pulling out the catheter or IV. Left alone she will not know that she should not get up. I dozed off for a few minutes and Dad pulled out his IV to go to the bathroom :) The fact that "they" tried to show her the tubes and explain the situation to her tells me that the staff is not very dementia friendly. Sadly this is typical in a hospital. If it was me... I would have somebody with my Mom that understood her dementia and could advocate for her because she can not do it for herself. I would also want somebody with her so she would not hurt herself.

I know you are nor only physically and emotionally drained but also scared. You do need some rest and an opportunity to make some decisions. I know in the hospital, the situation can evolve so fast that you can't seem to keep up with all that is going on. Social workers and doctors come in with pronouncements of what is and will be. Just know that you do have options and the final decisions are yours. Think before you act :)

I will say that doctors are prone to aggressive treatments. Make sure that is what you want. If your Mom has a living will or medical directive, now is the time to read it. If she let you know what her wishes were then this is the time to remember those discussions. Have a conversation with the doctor as to the prognosis and what to expect with and without recommended treatments.

Keep typing and venting.... and know that I will keep you and your Mom in my thoughts and prayers. I pray for her comfort and for you the courage and strength you are going to need.

Love, deb

ninamarc 10-02-2012 08:50 AM

Re: Mom has taken a major turn
I am so glad your Mom is with you in Calif now. It always happens like that. You waited until she got more incompetent and moved her! Good thing that you did!
Now you don't have to worry so much about her.
Well, is she still in the AL? I know she is in the hospital now. Hospital is not dementia-friendly. Sometimes the nurses may not know what to do about her behaviors or may not have time to deal with it. Defintiely hire a sitter to be there with her. My late FIL always had a caregiver with him in the hospital because he would escape from there overnight!
(He would not sleep overnight.)
Eventually she will go back to the memory unit. AL is more for people who are independent and then you would need to hire more one-on-one caregivers there. Memory unit may still require a personal caregiver (we had one for 4 hours per week for my late FIL in the memory unit in the NH for dementia only.) However memory unit would know how to deal with her via activities or feeding.

For now, hire a part-time caregiver so you can go to work and she will have someone watching over her.


dragging 10-02-2012 10:22 PM

Re: Mom has taken a major turn
Thanks Deb and Nina for your replies. I have a friend in Oklahoma who experienced having her father ill and in a hospital for a very long time and then her mother. She gave me some good advice yesterday about keeping the hospital on their toes. She told me to take a notebook and take notes, write down names of doctors and therapists etc. who see her and do it all in front of the nurses so that they know that I am keeping tabs on what they are doing with my mother. This morning before going to work I blended protein powder with grape juice and apple juice and brought that to my mother. She drank two full cups before I left and I got her to eat a mashed up banana and half a milano cookie. I left the rest of the protein drink in her room with instructions for the nurse to give her more during the day. I told the morning nurse that I had requested physical therapy to come and get my mother up and out of bed walking. I know that the longer she stays in bed the harder it will be for her to walk. She walked into the hospital and I fully expect her to be able to walk out. When I got to work I was able to get a friend who speaks Italian to go and sit with my mother for a while in the hospital and report back to me what is happening while I am at work. She told me that physical therapy cam and put her in a chair for an hour or so but did not get her walking. When I got there after work a nurse approached me and said that a gastro doctor wanted me to sign a consent to insert a g-tube and do a scope test. I said "absolutely not", I do not consent to the feeding tube. They called the doctor who would have to call me back. I brought my mother mac and cheese which she wouldn't eat, although I got her to eat a spoonful. I got her to eat two spoons of rice pudding, which she played with but wasn't swallowing. I then got mad and told her that if she didn't eat they were going to have to do surgery on her. She said she didn't want surgery so I told her she had to eat. I was then able to get her to eat an entire small container of apple sauce and another full cup of protein laced juice. They made note of what she ate. Next the physical therapist came because the nurse had told her I wanted to see her. She turned out to be really nice. I explained that my mother has walked all her life and that just three months ago she was walking all over Manhattan, as well as the fact that she walked into the hospital just this past Saturday. She then agreed to get her out of bed. Well, with a walker, my mother walked around the entire telemetry unit. When we passed the nurses station a doctor who had seen my mother on Sunday couldn't believe his eyes and said "Wow, I can't believe what I am seeing". What I have found is that they bring her food, try and get her to eat, she makes a face and says she doesn't want any and they give up and walk away. They told me they can't force her to do anything she doesn't want to do. I am looking to hire someone to sit with her while I am out work. A friend will go back tomorrow for a little bit but so far I haven't been able to find anyone on such short notice. The gastro came in as I was leaving. I told him what she ate today and he agreed that if she continues to eat, then the feeding tube is not necessary yet. He will do a barium test instead of sticking a tube down her throat, to see if there is any kind of obstruction. Hopefully, I can get her to eat more tomorrow to regain back some of her strength. Physical therapist will make her walk again tomorrow. THanks for the thoughts and prayers.

Gabriel 10-03-2012 09:27 AM

Re: Mom has taken a major turn
Yes, you are right about the hospital. They can encourage, but they can not "force" anybody to do anything. To that end they do not push with resistant patients. They do not differentiate because one has dementia. They will assist as long as there is cooperation. One of the many reasons a person with dementia needs an advocate with them in the hospital at all times. Someone that understands dementia and knows that first responses may be more about confusions than noncooperation.

Yes, the notebook is a great idea. If a problem does happen it is nice to have the names and events as they occurred written down. It does give an indication that you are keeping tabs. I can tell you from experience.... if something is going to happen it will be when you are not there :)

You have made several comments about a feeding tube. I get the impression that the gastro doctor is bringing it up as a solution to the eating issue and you are against the feeding tube. Please know that a feeding tube is YOUR choice as your Mom's advocate (if you have the medical POA/living will) and not the doctor's choice. Whether she eats or not, a feeding tube is your decision. That is why I suggested you talk to Palliative Care about your options. Yes, The doctor will push for aggressive treatment as if your Mom is going to "get well".... but you and I know that the dementia is the underlying problem and will not go away. Therefore it is up to you to advocate for your Mom's best interest :)

It is good that you were able to get your Mom to eat. Know that she does not need huge volumes of food to survive. The protein drinks or supplements are good. Do watch the Ensure type supplements because they can cause gastrointestinal problems. If she eats a little bit several times a day she should be ok. Stick with things that are sweet or salty and not bitter. Bitter is the last taste that goes so anything bitter will taste super bitter! Also texture becomes very important. So if you find a texture that she will eat better than another stay with that texture for a while.

If she can walk, it is best to keep her walking. You are right that if they don't use it they lost it rapidly. Hopefully PT is on board and they can get her up and moving. That will help in more than just keeping her ambulatory. It will help her circulatory and digestive systems as well :)

Hang in there.... you are doing good things.... and I do hope your Mom is better when you see her tonight :) Know you both stay in my thoughts and prayers.

Love, deb

jagsmu 10-03-2012 10:06 AM

Re: Mom has taken a major turn
When my mom was in the hospital she loved anything with gravey, mashed potatoes and gravey, I had them put my mom of a soft food diet so everything came mashed, including the veggies, your friend is right on with her suggestions, my mom could not ring the bell for help that was a magor problem. The hospital was not very good with my mom's pills, so I made sure that I knew when they brought them and what they were giving her, serveral times there were missed dosages. Beware of the gerri chair,, if your mom is not a fall risk then that is good, but if she is then they may put your mom in a gerri chair, it is a b ig wheelchair that has a locking servering table on the handles so the person can not get out, I found that the hospital staff use these as a sort of sitter, they place the person in them and then knowing that they can not get into trouble or hurt themselves tend to leave them in them.. Depending on how long your mom is in the hospital I took up some nice sweat shirts for my mom to wear instead of their gowns, we used their cotten pants, it just made her feel better that not everything was hanging out, I also took up some mens sling tee shirts , onthe smallish size and told my mom that they were the newest type bra, she loved them and then when she was changing she was able to keep some kind of dignity, I told the nurses that unless she soiled the t-shirts i wanted them to stay on her, I took a fresh one up every second day, we did my moms laundry for her, the hospital will only do their own linens, anyway just some things that I did, I do hope your mom is up and walking and recovers from this and is able to go back to her unit. As far as the feeding tube, well ,Deb is right, IT IS YOUR CHOICE NOT THEIRS;,and please think this through, do a search on this board for the feeding tube and read about some of the problems and the experiences. I opted out of that and to this day I am very glad that we did not go that route,

sending you lots of strength, remember that you are your mom's advocate, it is nice if the staff at the hospital like you but this is about mom and the care she needs and deserves.

hugs judy

ninamarc 10-03-2012 10:45 AM

Re: Mom has taken a major turn
I am glad your Mom now can use the walker and walk! It is good. Like I said, hospitals don't deal with people with dementia well. They don't bother to feed her personally and so they gave up. I think the doctor said feeding tube because it is his job in this ward for aggressive treatments. Of course, it is up to you to say no to him. Also, I suspect he was not dealing with dementia. Doctors who deal with dementia know that some of them don't want feeding tube. They need to be hand-fed! The NH would use the cotton tip to make her mouth wet and etc.
If you use hospice or palliative care, she can go back to the NH to have more peaceful care without aggressive treatments. Hospital has to do that as it is their job so if Mom goes home to the NH/memory unit, the caregivers can feed her personally. If you blame her it may not help but at least she tried to eat. However if the doctor wants to do the test, it should be swallowing test! He was not doing it from the view of dementia!

Make sure you state to the medical professionals that she has dementia and you wish for comfort care. Now the therapy can help her walk but eventually she won't be able to walk later on. She may not be able to remember what the thepapist said. But if the therapy can find the thing to make her walk, it is good!


dragging 10-07-2012 09:14 PM

Re: Mom has taken a major turn
Hey Deb. Mom got released from the hospital on Friday night. She has been doing well eating and going to the bathroom, however, I went to see her this morning and her feet were swollen twice their normal size. I know you have so much experience with many issues so I am hoping that you can give me some insight. Am I in for one problem after another now? Is this the point I have reached with my mother? I can't believe how much she has changed in the past three months. She walks ten times slower, her dementia is way worse, and now she doesn't seem to eat anything with texture. Like an egg salad sandwich, she will have a bite and play with it in her mouth for 10 minutes. I tell her to swallow but she continues to play with it. After much coaxing and many sips of drink, she will either swallow or spit it out. I have been pureeing soups chicken noodle or beef stroganoff into a paste or liquid and she will eat all of that. However, when I gave her a mini pop um powdered sugar donut, she managed to swallow that! Now that she is here with me it seems that all I am ever doing is going there before work and after work or going to the hospital or doctors. I can't wrap my mind around the fact it is only going to get worse.

Gabriel 10-07-2012 10:48 PM

Re: Mom has taken a major turn
I have had much experience with the ankle swelling.. and even in the hands. Sometimes it is just a function of not moving enough, or moving too much. Mom was walking constantly for 16 to 18 hours a day and her ankles were huge. Now that she is non ambulatory... there is no longer a problem. But I do insist that they elevate her feet several times a day. It is keeping them in the same position for too long that is the problem. We are made to move.

If she has any congestive heart failure or kidney failure it could be a function of water retention. Make sure the doctor knows about it. Also watch the swollen areas. If they become red, hot to the touch, or begin to break down into sores let the doctor know immediately because that can be cellulitis.

I am not surprised that she has taken a steep downward decline after the broken hip. It is what happens when there is stress and trauma in their lives. She is walking and back home.... that is a blessing :) Yes, new problems will arise as time goes on. There will be good days and then there will be other days. You will figure it out as you go. Just know you can't stop any of it... you can only deal with what comes your way.

If Mom doesn't like the textures then puree. You can run anything through a blender. Mom is beginning to do the same thing to a degree. She will chew and chew and chew and chew... then eventually swallow what is in her mouth. She may or may not open for more. She might just keep chewing on nothing. I have seen her chew her milk. The brain has to tell them when to chew and when to swallow. It is not a simple process to know when to do what and for how long. So they do the best they can. The best we can do for them is to give them things that they enjoy enough to keep eating and/or find a way to make the food into a form that they can handle. Again, anything can go through the blender. Use stock, milk, or water as appropriate to get the consistency right. When you find a consistency that works stick with it. If she is having trouble with liquids (frequently they are difficult to swallow) there is a product called Thick-it which you can use to thicken liquids. It has very little to no taste so you can thicken her favorite drink or broth soup. I would also suggest a supplement such as Ensure or Boost. You can serve it cold as it is or mix it with ice cream in the blender for a great milk shake :)

I do understand how you feel... you are responsible for your Mom and you spend your time with her and you worry about her and you do everything in your power to make her comfortable and encourage her contentment. Somebody else's well being is a heavy burden. But you have survived this far which proves you are a strong person... and you will make it to the end. Remember to take time for yourself!!!!!!! I can't emphasize that enough. This is a marathon not a sprint and we have to pace ourselves. We need a break every once in a while. Take a day off. It's ok. She will be ok.... and you will be better able to deal with all that you have to deal with if you are refreshed :)

Love, deb

dragging 10-07-2012 10:59 PM

Re: Mom has taken a major turn
Thanks for the encouragement. Oh, by the way, my mom never had a broken hip! Must have me confused with someone else. They didn't mention any heart problems this whole week she was in the hospital. Will try and get her a doctor's appointment tomorrow. Have a good night.

Gabriel 10-07-2012 11:44 PM

Re: Mom has taken a major turn
Sorry, I did have a moment... You Mom has shingles and then A UTI and dehydration. It's late :) Please forgive me!

If the doctor's didn't mention any heart problems but there was UTI and dehydration then there could be a connection to the kidneys. I showed doctor's and nurses my Mom's swollen ankles for years... then one day they just cleared up. I am sure it was because of her consistent walking. I do know that many of our residents develop swelling when they sit too much. Just as we do on a long plane ride. Be sure she is up some and down some and her feet propped up some. Position changes are the best thing to try first.

Cellulitis is possible so be sure to check for heat, redness, and skin breakdown. It never hurts to have a doctor check her out :)

Love, deb

dragging 10-16-2012 11:36 PM

Re: Mom has taken a major turn
Okay, so just when things seems to be going well... First, mom has been out of the hospital for a almost two weeks. She is doing much better and looks better. She is walking around and seems happy. Then, this morning when I went to see her I found a plant that she had received at the hospital tipped over on her dining room table. The dirt was on a plate that had a spoon on it. There was dirt on the lace table cloth as well as the floor. She was asleep in her bed. The attendant came in the room with me to get her up and dressed. I asked the attendant if she thought my mother ate the dirt. We both had no idea. That is until the attendant said good morning to my mother and my mother smiled and we both noticed all the dirt stuck in her teeth and in her mouth. OMG!!! I know they gave her meds to increase her appetite, but this is a little much !!! Seriously though, is this another phase in the dementia - eating bizarre things?

ninamarc 10-17-2012 10:41 AM

Re: Mom has taken a major turn
It is true that the demented person at some point will not know what is the right thing to eat. So when the plant fell onto her bed, she thought it was food. The caregivers could not be there every minute. The best thing is not to have such plants in the room. Some NHs say that they are not responsible for the plants as they may not have time to water. Since she is at this stage, you just need to remove all the plants. Put some fake plants there for decoration.
It is sad that the demented person in the end may not understand what food is and could take in anything. Her sense of taste also changed. It may be in late moderate or severe stage. My late FIL didn't do that as the plants never fell on him and we had no plants in his room in the NH in the last 2 years. Your Mom probably needs to be monitored when she is eating and she may need help to know what to eat.
Sorry that this happened. I don't know if this is AL or memory unit. It may be helpful if she is in memory unit and the staff may know what to do. Just imagine she is like a small child who can take in any junk as food. Basically her ability to know the difference has diminished.


Gabriel 10-17-2012 12:07 PM

Re: Mom has taken a major turn
Dragging, those are the kinds of things that happen eventually and why you do need to keep a constant eye on them. I never had Mom eating dirt (though I know of some that have) but she did pour sour milk on her cereal and start eating it before I could get to her. I had to be very careful of what was in the refrigerator because she had no idea if foods were spoiled or not. The deficiencies in her taste sensations didn't help her to determine if it was good food or bad food. The visual perception and processing was deficient as well so she did not pick up on the visual cues. Smell deficiencies rounded out the inability to determine what was eatable. The same thing goes for non eatable items. It may have looked like crumbled up chocolate cookies to her. The texture was about right. Mom did "drink" hand lotion. She called it her "energy drink". She also mixed it with her peanuts!!

To that end I removed or locked up many things from the house that could be confused with foods. Plants, dirt, medications, cleaning supplies, detergents, are all problems when they do not know what to eat or what not to eat. I also put bathroom supplies out of sight with a child proof lock on the cabinet. Mouthwash can be a problem if they drink it. It is like making a house safe for a toddler that puts everything in their mouth. Be glad it was just dirt. That won't hurt her and it could have been much worse :)

Love, deb

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