Mother had a rapid onset of dementia a few months ago (UTI's, hospital stays & some meds I think). She went from last hospital stay to rehab at a NH and from there to an Assisted Living facility. She will be 96 this month, is in good health, but miserable, scared, has horrible anxiety, sundowning frequently and pretty much has all of the other attending symptoms that define dementia.
She does not sleep and continuously climbs out of bed and gets in the floor. I don't think she's falling per se, but 'in the floor' in any situation can't be tolerated by the AL -they could get fined by the State. Mom won't call for an aide until she's in the floor. I've asked why she wants in the floor and she told me she thinks it might keep her from having the constant urge to go to the bathroom which she feels most of the time when in bed. She is on a low dose antibiotic so she shouldn't have another UTI at this point. The other problem is that she became a crier at the NH. She would rarely press her button to call for assistance and figured out in her confused brain that the best way to attract attention and get someone to come was to cry (boo-hoo) loudly. At the AL this is not a good situation because she upsets the other residents. The nurses in charge have expressed their major dissatisfaction at having to deal with either one of these behaviors.
I have her in the 'Memory Care' (Dementia/Alzheimers) section of the AL. She gets much faster response by their staff and it is certainly a much more pleasant facility (nice rooms and no odors) that she would have at the NH. But I am at my wit's end to come up with anything to change these behaviors. She has been at the AL for 2 weeks today and last Friday I had to employ sitters (per the AL) to come in at night to stay with her -hopefully to make her feel more secure and help get her adjusted to the AL. Isn't working so far. We also got a med change to Remeron last Friday too that would hopefully help her sleep. Apparently that hasn't done much yet either. She takes a bp med (Coozar), Arricept and Lexapro. Xanax was causing her problems (tremors & more) and it was stopped last Friday.
Has anyone dealt with either of these? Got any suggestions? Don't tell me to get her put on Seroquel or other antipsychotic because they've been tried and I think put her deeper into her dementia.
Thanks for any advice.
I am glad your mother is improving. The doctors who have helped her and have them make the call on her meds. Report directly to the doctors how she is doing, insist on a phone # to reach them 24/7 if she has problems during the night. My dad's internist would call me back during the night if I was concerned
about how he was doing. If the parent has confidence that the doctor knows what he/she is doing your mother's anxiety level will lower--not to mention your worry level as a caring child/caregiver. Your mother is in her 90's she deserves the best care we as a nation can give her to make her remaining yrs as pleasant as ever.
Hang in there, your mother has much to be grateful for this Thanksgiving--you.
Happy Thanksgiving.
Elizabeth
The doctor also said he thinks she has Parkinson's (her GP also thought it might be, but then decided it wasn't). If she's got Parkinson's and only mild dementia (she had mild dementia before the UTI's began), then that means to me most of her mental (severe confusion & other), physical and behavioral may be caused by the medications they've been shoving into her & switching around? Poor little mom, I am amazed she has survived. It's all so horrible and hateful that after months we still have no answers and mom is having to suffer being a guinea pig for their guesses.
I've read conflicting info on discontinuing Aricept abruptly. Anyone had any experience with it? She was started on it in June.
By the way, this issue could somewhat resolve as she adjusts to her surroundings and if her UTI pain is handled. Best of luck. Very tough.
My Mom is in hospice [dementia/cancer] and the 3rd day she was there she tried to get out of bed 3x. So they moved her into the room that is directly across the nurses station so they could keep a better eye on her. Mom was bored being alone and not seeing another human being. And now she waves and talks the staff out of their ears. She also had UTI, antibiotics that worked, but has a catheter tube [permanently] inserted into her uthera and the urine flows into the bag, which works wonders for Mom. Also, she has a bed alarm. Its a little machine attached to the bed with a soft string that clips onto her night shirt. If she tries to get out her bed, it makes such a loud sound that they know what she is trying to do and run to her aid.
I agree totally with Lizann and reindeermama. I am appalled at that NH. Move Mom. That place sounds uncaring and incompetant. My Mom has been crying a lot lately and pleads with me that she wants to come home. It hurts like crazy. God bless you to find a good, compassionate, and caring facility for your Mom.
I actually can relate to what you are saying about the behaviors your mom is exhibiting at the facility she is in. My MIL actually had the same issue with a bad UTI triggering her Alzheimer's to the extreme. She had to go to the hospital to get treated because we had no idea that a UTI was causing her all the problems she was having at home. We discovered that she is highly uncooperative with people she doesn't know when she isn't at home. She actually had to go to rehab for 6 weeks after the hospital stay because she all of a sudden couldn't walk after she went into the hospital. She had walked just fine until then. At first, we thought it was the UTI that had caused her to lose the ability to walk. She refused to do anything for the staff in rehab. She would lay in bed wetting herself and would cry and scream for help all the time. I could tell some of the staff didn't want to have to deal with her because of how she acted. To top it off we discovered later that she was going through horrendous withdrawl from quitting smoking. She had smoked 2 packs a day for years before all this happened. My point is that the only time she showed any type of real cooperation is when my husband and I would go visit her. She would get out of bed and walk and socialize the best she could. She is very stubborn when it comes to listening to anyone but my husband and I. She will flat out refuse to cooperate when she isn't at home. She is home now, but it has been one heck of a journey, so I have an idea of what you are talking about. I hope and pray you can get the help not only for her but for yourself too. I know how stressful it is to watch a loved one in that situation. They get so confused, and honestly I can't blame them for that. It must be pretty scary for them.
Don't feel you need to apologize to the staff. They should be with her and she should not be getting out of bed without their help at age 96. She is amazing to still have the ability to stand and walk at all. This ability is generally gone before this age.
I would get the meds checked, get her longtime doctor in charge or in consultation with the doctors at the ALF to get a plan that works for her. They should be able to make her feel more secure. If she feels secure some of the
behaviors will subside.
Put familiar things in her room so it looks like her old bedroom. My father kept his mind and enjoyed a digtal picture frame with the pictures of himself and my deceased mother and their lives. He loved seeing pictures of his parents too. It gave him comfort as he entered his 90's.
Finally if possible get family members to visit her regularly. The staff will be more responsive and even if she doesn't know all the family members their kindness will help your mother. I know people don't want to visit a family member with dementia but their brain will be helped by seeing family--it adds to their security. The visitor doesn't need to be acknowledged by your mother, it's your mother they need to help. I had to remind my friends of that fact.
You are doing a terrific job. Remember, you can not change everything and make it "right" for your mother. Her life has a course to run and at 96 she has been running a long race. Good for her. I know you are thankful for having her this Thanksgiving and somewhere she is thankful for having such a devoted daughter. I will pray for each of you.
Elizabeth