How long have these symptoms been present? If acute, it sounds like they ruled out a UTI. What about medication interaction? Glad you also had a neuropsych. All these can rule out and rule in differential diagnoses.
I hope there is a diagnosis, and of something fixable, very soon. This sounds incredibly stressful.
@Hoggirl sending sympathy for your family’s loss.
I’ve been out of touch, spending time with my Dad, we went to his double cousin’s wedding (groom was 77). He did great and every single day is a blessing.
We put a DAR marker on Mom’s headstone, no one in the family besides me had seen it because I placed her ashes by myself when they set the headstone. So it was nice that her grandkids (almost all!) got to see it.
My dad has been in Memory Care for 2 years. He definitely has good days and bad days. I usually go to see him once a week. I went to see him a few weeks ago and he was pretty sharp. I was on vacation for a couple weeks and went on Friday when I got back. He was very pleasant, but I am pretty sure he didn’t know who I was. He asked me if I had ever been there before and I showed him a picture of my dog (who he loves) on vacation and he asked how I knew the dog. Kind of sad.
For those that have moved from Assisted Living in the memory care unit to a nursing home…what was the critical shift that caused the move? I am debating if it is time…tia for your experiences
So sorry @Hoggirl!
@aekmom - For our family my mom went from home straight to memory care. It was a safety issue.
@tx5athome Usually, my parents don’t know who I am. It’s tough as they tell me they miss their daughter and wish she lived closer! @Aekmom toughest move I ever made. It was clear they both needed 24 hour monitoring. Mom, the less demented one was tested clearly in the range of moderate dementia and could not be expected to care for herself much less her severely demented husband.
@Aekmom I’ve mentioned it before, but my mom went from AL to MC (never needed nursing home) after she had the flu and lost a lot of weight. And I had already hired an extra care giver to come help her dress and take her to breakfast. But the staff believed her that she wasn’t hungry or already ate and didn’t record that she DID eat. She almost starved to death, literally. She was down to 104 lbs. After being in memory care she was stable about 120 and they recorded her food intake daily so that I could check it when I had the care conferences. She was no more demented before or after she moved, but the level of care was lots better (and more expensive).
IMHO, if you are debating, then it is PAST time and you should pull the trigger on it.
For my dad the move came when he started falling too much. It was just impossible to keep him safe outside a nursing home. He also had a suprapubic catheter and other issues it was just impossible to keep him from falling. We could have stayed longer if we hired an aide to be with him 24 hours a day but that cost as much as the nursing home plus still had to pay the memory care facility.
Thanks everyone…I posted so quickly that I didnt explain… Dad is in memory care…had been on just assisted living but dementia and mobility required more care and supervision…he is falling more often, has little awareness for decison making , only sits and watches tv so what little strength he has is waning…this next step seems yucky so I dont want to do it unless nescessary…the NH does not use alarms either so I wonder if the fall risk will be any less.
For my mother, the switch from AL to nursing home was necessitated by a stroke that left her with swallowing issues. Staying at AL would’ve involved getting a private aide to cook, puree and supervise her meals. Eating in the dining room, which wouldn’t have been allowed anymore, was her primary venue for socialization. It didn’t make sense for her to be in AL, especially with the additonal costs of a private aide, and she needed the greater supervision the nursing home provided.
Falling is really difficult to prevent. The nursing home got him to use a wheelchair when he wasn’t actually doing physical therapy or walking with someone to help. He would still get up sometimes but enjoyed the better mobility compared to sitting still all the time. Restraint laws vary but in our state the nursing home was able to use belts with velcro and alarms. So first you would hear the velcro ripping and then the alarm. They still couldn’t leave him alone in a room but it worked in actvity rooms. A couple aides could monitor a group of residents, many with similar belts. This nursing home had an evening activity period where anyone who wasn’t safe alone in their room (or who wanted to join in) could gather for activities, movies,snack etc. They learned the residents’ habits and aides came to get residents ready for bed at the time that person was known to be ready to settle down for the night. They used various chairs as a form of subtle restraint. Some wouldn’t try to get up if they were in more of a recliner. Some would relax if tucked in with a lap blanket. They used so many methods to keep people from falling. When he first got there they kept an aide with him almost all the time until they got to know him. So many people there who thought they could just get up and walk but for a variety of reasons were not strong enough to walk alone. Heartbreaking. Try to observe any nursing home you consider in the evening hours and see staffing level and how they handle fall prevention.
This was an entire floor of patients with some sort of dementia plus a physical (usually orthopedic) problem.
It was better supervision than the dementia unit but it wasn’t our decision. The dementia unit told us they could no longer keep him safe so he had to move.
Good luck!
My Dad is in Memory Care and still fairly mobile. He was very weak after his bout with pneumonia earlier this year and his physician warned that if he was a fall risk the facility would require us to provide an aide (which is not in our budget). He rallied after PT, but we decided that IF they facility requires an aide we will transfer him to a board and care. Right now at the Memory Care there is more activity and he is comfortable there, so I don’t want to transfer him now.
For some, a memory care based skilled nursing facility is optimal. My father was in one for 4 years. There were structured activities all day, at a variety of levels, and excellent care for physical decline. I facilitated his move from there to an in-house AL with a good medical component. Neither he nor I ever looked back. He had built in activities and socializing. When the head nurse told me they could care for him until the end of his life, I exhaled. In my experience, once one is asking if it is time for more care, it usually is.
Long story short … My mom called today clearly at her wit’s end with my dad. He wanted her to drive him on a nonsensical errand and she wouldn’t so he decided to drive himself. That’s impossible, because my brother has disabled the truck. So we know he’s not going anywhere, but my mom felt overwhelmed. She thinks he’s being willful, and I told her that he can’t help his delusions. She refuses to put him in any kind of nursing home so she says, “What are our options? Have someone come over to restrain him?” I told her that that wouldn’t happen.
So, I ask the wise minds here – what are the options? He can dress and toilet himself. Mom is in great shape, but she freaks out whenever he says untrue or unreasonable things. We could get “help” in, but she doesn’t need the kind of help others can provide. Is medicating my dad an option, or is that inhumane? I’ve seen many of y’all talk about different anxiety meds your parents are on; is that what my dad needs? TIA
@Youdon’tsay, some anti-anxiety treatment might help your mom. Not necessarily a medication, although that could be an option. As could therapy, a support group, regular time away from your dad, stuff like that.
I feel so sorry for your mom and the situation in general. My mom was very difficult to deal with when she had a bit more physical and mental ability than she has now. I can’t be sure what caused the change since after being sick and hospitalized, she was put on two new meds- one to help with her dementia (donepezil), and one for anxiety/depression(sertraline). She is generally more docile and less combative now. She is weaker now, so hasn’t tried leaving the house or going outside unsupervised. Sad for her, but from a caregiver perspective, one less worry (although I’m concerned with her falling, which she hasn’t, yet.)
I hope your mom will consider letting someone come in occasionally to give her a break, or be open to potential medications. I don’t think it’s inhumane to want to help calm someone who can’t help or control their agitation, and who might be a danger to themselves or others in that altered state.
“She thinks he’s being willful, and I told her that he can’t help his delusions.” Same thing went on for my in-laws, except it was my former FIL who thought his wife, who has Alzheimer’s disease, was being willful and was trying to aggravate him when she did the things that people with Alzheimer’s do. I’m sure my former MIL was not being willful but I also think she picked up on FIL’s testiness and her behavior didn’t improve as a result. So a cycle of negative behavior and negative responses started. The only one who had control of behavior and responses was my FIL, but he was so stressed that he didn’t want to accept what he saw as the additional burden of changing his reactions.
YDS, I think your mom needs an ally. She needs to be able to express her frustrations, fears, and the (increasing) sense of responsibility for managing his ideas. I don’t think a same-age friend is going to do that for her the way our friends might, for us. I don’t think sedating Mom is going to make this sense of responsibility go away, though it may help her catch her breath. An ally can commiserate with her. Maybe sometimes distract her. Not just explain he can’t help it. It’s tough. Maybe that’s the right hired person. Unfortunately, it often means one or more of the kids.
If this is the crux of the issue, no medication is going to help. Therefore, as a caregiver, she needs to understand and accept the disease process. A support group might work well so she doesn’t feel alone. On medications, Both my parents say untrue and unreasonable things, as least when you can understand what my dad says. The medications help prevent the frustrated anger and depression. But the delusions are still a predominant characteristic. At my church, one of the women with a demented husband gets respite care so she can get away and do things. Recently, she went on a retreat while her daughter came to spend time with her dad. She also found anti-depressants to be helpful for her to manage the anxiety and hopeless feelings. She finds the anti-depressant not sedating and instead finds she is doing more without the shackles of the negative thoughts.