Mom is worse...

Have you contacted her own private physician? Why was she in rehab for a month for a urinary tract infection? Is something else going on with her? She needs to be re-tested to make sure the UTI is completely gone.

As for Thanksgiving dinner, a few years ago I gave permission for a friend to take my mom out of her NH and spend Thanksgiving with her and her family. (We we’re going out of town). If you went somewhere to eat that Mom was not familiar with, I’m sure she became confused about where she was and that caused her to forget why she was there.

It concerns me that Mom is having mobility issues—what happened at rehab—I’ve been there with my hubby. I know it couldn’t have been easy on you or her. Both of you could be hurt if she should fall. If you need to take her out, can someone be there to help you?

It is really heartbreaking and scary to see our loved ones declining in health and cognitive skills.

I am so glad a nurse is coming in today. I hope you get some answers.

My has not been walking for a long time. She went downhill since May. Last time in rehab that was when she was put on lexapro. She is off of it now. She is quite immobile. She was sent to rehab because I thought with ot and pt it would help her to regain her strength. A uti infection in probably not a big deal for most people but it is for my mother. She is 95 and when she gets one she gets confused and very weak. She is like not weight. She is 128 pounds and 5'8 I am only 5'4 and have no help. It is tough for me. We eat thanksgiving dinner at home. I had gotten takeout from a local restaurant. I will see what the nurse says.

All these changes to her environment can be so disorienting to any older person and worse to a person with dementia/Alzheimers. Bottom line, she needs good care! Are you happy with her doctors? If not, change them! I had to do that once. Now, I am a bit wordy, but everything I say is true and from the heart. This may have happened to me if I didn't have the help of others.

If she has good continued care post hospital and rehab, she may be able to regain her memories and her strength. My mom was in and out of the hospital and rehab a number of times when she had congestive heart failure...leading to pneumonia, 6 times over 3 months (until she had a valve replacement at 88 years old) and then more recently for a UTI. UTI's play havoc with an older person's mind for some reason. My mom did come back to her "old" self, thankfully. It took a few weeks. I have all legal responsibility (power of attorney and medical power, also) for my mom, and I say am basically an only child (with a brother who does nothing and lives far away.) I had to form a "team" around me for my sanity. I couldn't do this alone. While my husband listens to my stress, he does some things for my mom like provide her transportation to and from our house from her assisted living home. Most of all, he has assumed a lot of the house chores. I have a daughter who is a nurse who gives me a lot of valuable information of what to say and what to do. I have a brother-in-law who is a doctor in another state who also guides and will call the hospital or home when needed to get people on board with me. My mother's primary care doctor is caring and wonderful.

Word to the wise, if there is a next time, make sure she is in a top-notch rehab facility. Some of those facilities are plain awful: dirty, uncaring, equipment old and failing. They let patients stay in bed all day. I worked with the social worker who was going to place her in a rehab facility because I wanted to choose it. I checked their ratings, visited a few, etc. Do not think you are being a pain in the neck. You are caring for your mom. The rehab facility should not have discharged her if she was unable to do the things she was able to do prior to going into the hospital. There is a list of 6 to 12 (depending on the list they use) activities of daily living (ADL's) that they use about to evaluate a patient when they enter rehab to see what he/she has been able to do independently: dressing, bathing feeding, etc. Did you answer those questions or did your mom? This is how they determine how much rehab they need to do. I made sure I answered because my mom tends to answer what she knows that moment in time. If she was getting worse, you could have transferred her to another facility, and lodged a complaint for neglect, lack of service, whatever you feel caused her to get worse. One facility tried to keep my mom in bed all day.

So you have a nurse coming out to evaluate your mom. Please ask if she can get more labs since your mom is still so disoriented. She may still have a UTI and you do not want to take her out to the lab. Insist on home physical therapy to build her strength. If she is having trouble bathing, dressing herself and/or feeding herself she can qualify for occupational therapy. You are your mom's voice and advocate.

Even though I feel so alone at times in this storm since I do all the leg work, I am lucky that I have a nurse and a doctor in the family to advise me. I am only happy I can pass along some of their advice.

Update on mom!
Nurse came to house she was shocked how bad my mom was. She said could not admit her to home care(ot,pt) said it was too dangerous. Suggested she go to hospital. Everybody thought she had uti(nurse, paramedics, nurse in hospital) but dr said nothing is wrong with mother. Told dr that I didn't expect her this bad and I have no help he said she could stay in hospital overnight. Problem this is a holiday weekend and can't get hold of anybody. Palliative care won't be back till Monday. Another dr. Didn't want my mother to stay in hospital said it was unsafe with a lot of germs and infections also said hospice won't help need assisted living. Can't understand that there's nothing wrong with her. She was gone downhill in less than a month. I still think she had some kind of stroke but dr said it would show up on cat scan. But had exact same symptoms 5 years ago and ct scan showed nothing hospital thought it was a Tia went back to rehab and a major stroke within hrs. I still can't understand how all this has come on in just a couple or weeks. And major downhill just overnight and yet hospital says nothing is wrong with her hopefully she can get thru weekend and see what decision I can make

I put my mom in Ltc and she ended up in the hospital they gave her. Bed away at the long term care and she was sent to a horrible nursing home, she wasn’t cleaned or fed ..she had a sheet on her with a thin blanket on cold nights ..I took her out ama and she is doing better at home ..some of those rehab and long term care places are horrible and don’t care at all for the eldely ,,my mom just needed to be home I make sure she is fed and dry and warm and she’s fine ...I will never place my mother again ,,,who knows what goes on after you leave ..it was traumatic for mom and me and she’s had the shakes in her hands since she left ...so we see her pcp on nov 30 the we will see her neurologist ...I asked why she shook like that ..she said “I get very scared and nervous “. My poor dear mama

Oh, my heart is heavy for your poor mother. Thank God you brought her home.

Gosh, you poor thing.

Why DO these things *always* happen over holidays and weekends, when there's nobody about to help?! Just seems to be a law of nature, sigh.

Busy hospital teams are very keen not to admit new patients if they can possibly avoid it; and it is perfectly true that germ-laden understaffed hospitals can be terribly dangerous places for little old ladies. So whatever their reasoning it probably is the best idea in the short term for your mother to be safe at home with you.

Try not to worry, just keep your mother quiet and comfortable until everyone's back at work; and then can you perhaps get her own doctor to come and assess her? And will the nurse come back in the meantime if there are any sudden changes that worry you?

A sudden decline is always very worrying and frustrating but the truth is that this is frequently what happens. Make sure her urine is tested again and sent for culture. It is highly likely they were giving her the wrong antibiotics if it was not cultured.
You sound as though you have palliative care for Mom, can you ask them if they consider she might be ready for Hospice. Saying there is nothing wrong with her is plain bull s**t. What they meant was they couldn't be bothered to look any further because she is an old lady with dementia. I frequently question if some of these Drs even went to medical school.
Medicare only allows a certain number of days in rehab so that may be why she was discharged too soon.
All things considered it sounds as though she is better of at home with your loving care.

Dat1917, you say that your mother didn't remember how to eat, said she forgot what food was and was saying odd words. Has she been doing this before? Is it dementia or do you attribute it to the UTI? Did the ER give her an antibiotic? My LO is very frightened in the hospital. She gets very scared and it's probably the worst place she could be. Plus, the exposure to super bugs is very real.

I have had two ER doctors inquire if my LO was on Hospice. With recurring infections throughout the body, loss of mobility, disoriented, and continued decline. They do the tests and say that it looks ok, except UTI, but, the only thing that is causing her decline is the dementia. Eventually, it progresses. Loss of mobility, loss of speech, loss of appetite, etc. There isn't an actual treatment that can fix it. At most, they can keep the person comfortable. The infections will reoccur. 

Dat1917, can you tell us more about the Palliative Care you have?  How did you find them?

Update
My mother is still in the hospital which is good News for me. I did meet with a person from hospice. And also got a call from palliative care. They only come once every two weeks. I met them at rehab at my mothers last stay there. I am still leaning toward hospice but I have asked for a neurological consult. I just can't see how someone can go downhill that bad in one day. I still think she had some kind of stroke or they got her test results mixed up. They think the neurologist will be there Monday. A case worker said she will talk to me tomorrow. I will see what she has to say.

Hospice can be a very good choice. They are usually not related to the hospital or nursing facility, so they can present a clear medical picture of what is going on and keep your mom safe and comfortable. They are there only as often as they are called to be there. Who will call ?

Is it possible your mom was given medication incorrectly? My mom's roommate almost died in a rehab facility was given "time released" medication by crushing it and putting it in applesauce.

If your mom has had TIAs before, you know that not all TIAs show up on the tests they give. My mom has had them and her doctors never told us. They show up now easily on CAT scans, but I only found out by reading her medical records. Do you have access?

All you can do, if you have the luxury of time, is spend as much time as you can with her now. Observe the goings-on and be nice to everyone who works with her. Take time to love your mom now. It is a blessing to have a mom at 95. I would sit for hours holding my mom's hand in the hospital, at rehab, talking softly about family, the world... You may prove to be the best medicine yet.