Disastrous first day in assisted living

Gallmeiers

Last November we moved DH’s sister from Tulsa to Houston in order to assist with finances and get her to dr appts and order meds. She was no longer able to call on phone for appointments, pay bills, drive, go to appointments, open and handle mail. Moved her to independent living that she picked from short list. DH has full POA and handles everything, with her blessing. She is able to take her meds as long as I have a daily checklist for her. So far she is checking off each one when she takes it. Her memory has gotten worse and she is at times confused about where she is, OK or TX. Other times she is fine. She will not engage with any fellow residents, but will chit chat with us. After her dementia clearly worsened, we moved her to assisted living with memory unit. Moving day was traumatic, but we got through it. We spent the next morning hanging pictures, talking about activities, fitness classes, etc. We took her to dining room for lunch and came home. I went to check on her at 4:00 and she was outside with a director….angry, paranoid, refusing to stay, calling it a prison, and more. The director said she is going out multiple times to smoke and resents their trying to help make sure she can find her room again. She told me she hates it. It is a beautiful facility, excellent food, incredible activities. She can walk in and out to smoke when she wants. But they are being protective since she just arrived, and because it is 105 degrees in Houston right now. She shouldn’t stay out longer than it takes to smoke one cigarette or she could get heat stroke. Director told me if she keeps going in and out, they will put her in memory care unit. She is belligerent, angry, verbally abusive. She argues about going to dr appts …like I am doing it to persecute her. We are at the end of our rope. She can seem so functional at times, and then forget our names. She toured this facility twice and ate there, but says it never happened. How do we get her to accept this living situation, and if she won’t, is our only alternative to lock her up in memory care? Help

CCG

zauberflote

Sounds like she's not adjusting well because her dementia has gotten worse, poor thing. I'm sorry it's this bad for you. If she's not cognizant of how dangerously hot it is outside, MC may actually be safer for her. Her current AL may not be staffed to haul her in each time she smokes. MC would be able to enforce rules more easily. 

Mom went through a very angry phase too. I hope your SIL can forget the anger as Mom did. 

dayn2nite2

She needs to go to memory care and you’ll need to slap patches on her so she weans off the nicotine.

Gallmeiers

Zauberflote, thank you for this response. We constantly worry that we are acting prematurely in arranging care for her.

Jo C.

MC is certainly an option, but first I think that I would have her checked for a "silent" UTI.  These UTIs are called silent because they have no physical symptoms of pain or burning, but the most common occurrence will be a significant change in behavior to the negative side of  the ledger until the infection is treated; it can be quite dramatic.  If being checked for a UTI, be certain that the physician orders a culture, not just a dipstick.  If she sees the doctor, also would be a good idea to have her labs drawn to ensure she does not have an issue such as electrolyte imbalance, etc.  At the same time, the doctor can review her meds to see if there may be an issue there.  If she has a silent UTI, she more than likely would return to her usual baseline after treatment.

Change is the biggest upset for our Loved Ones (LOs).  They benefit best by routine and structure.  Also, being that she has moved twice in a short period of time - once being out of state, it has been necessary for her to adjust to very large multi-floored settings and this could also be causing some adjustment and adaptation issues. She may not be feeling secure and safe and the routine has been very upset and she is feeling overwhelmed and is angry as that is the only way she has of expressing what she is feeling.  That can be worked with.  However; those cigarettes - that is indeed a challenge. How did she manage before this recent downturn?

Let us know how it goes; we will be hoping for the best for you,

J.

Gallmeiers

Thank you so much for this response and information. Very helpful. After I posted this, we received a late call from her facility that she apparently suffered a broken blood vessel in one of her eyes. We will take her to ER today and also ask for UTI testing and electrolytes. She literally takes handfuls of meds every day for cardio and RA. She quit smoking 7 years ago after heart attack. Started again during COVID lockdown when her stress spiraled out of control because she could not manage her life anymore and her only daughter (who was cerebral palsy and lived in a facility) died of cancer. That’s when we stepped in to handle everything and move her. In the independent living facility she would go out to walk around and smoke. She has never smoked indoors. She seemed to be handling that ok and even said she was only smoking a few cigarettes per day. It is impossible to find AL that allows smoking. How can we get her to quit. Would a doctor agree to tell her she absolutely has to quit for health, that she literally can’t smoke again? Can we make her do something against her will? She was hospitalized for COVID pneumonia in February. They put her on the patch but she refused to use it when back home. The hospital actually released her before she was fully recovered because she was hysterical, combative, disturbing the other patients and wandering the halls. I had to nurse her around the clock for 4 days until we could get home health. I purchased her Nicorette gum and asked her to use that instead of smoking so much. She refuses. 

We don’t want to force her into MC if she can still function in AL. We want her to have quality of life.  But we don’t know how to handle this. We will start with ER doctor this morning. We’re just day by day right now. Thank you again.

dayn2nite2

I did exactly as I recommended with my mother.  She had daily nicotine patches until done with the withdrawal.  No other way, really.  I tried Chantix with her and she got aggressive so I don’t recommend that.

May flowers

I quit by using ecigs and tapered down the nicotine, but that doesn’t seem feasible for a PWD, as the caregivers would have to handle charging and refilling the pen.

I wonder if a nicotine patch could be placed on her back in an area she can’t reach?

Sorry you are going through this, it is so hard.

zauberflote

Gallmeiers, you absolutely can "make her" do something against her will. That's why she gave her brother POA with her blessing. She is not giving her blessing any more, so it helps if you think of it as you "doing things for her" as opposed to "to her". 

I would think any cardiologist would be delighted to tell her that smoking will kill her. The rest is up to you..... We had to remove MIL's cigarettes when she was about 90-91, because there was an amputation looming if she continued to smoke. MIL was always mild mannered and easy-going, so we told her that she'd given up smoking a long time ago. It really only took a few weeks for her need to abate, and she died at 93 with both her feet. 

MN Chickadee

Very good that you will check for UTI and get a to a doctor to rule out infections. You may have to use therapeutic fibs for appointments. Maybe it's a  quick blood pressure check that Medicare requires. Or the appointment is for you and she is along for the ride. Bribe, find work arounds. 

Many people think they are doing their LO a favor by keeping them "independent" and in a lower level of care, but being on the other side of this I would say that it isn't necessarily the best for them. AL is often just light assistance. It is not designed for someone with dementia, leaving them out fending for themselves during the day, not keeping up with their peers' conversations or the activities. MC is soooo  much more structure, support, and most importantly the staffing ratio is higher and they have better training in dementia care. It doesn't mean an end to quality of life. It means more care. A good MC is very skilled at keeping the person active mentally and physically and able to live to the best of their abilities. It removes so much of the stressors of every day life that make them anxious and angry so they can use their cognitive reserves on activities, visits with family, or whatever makes them tick. My mother actually improved in MC once she was getting the care and supports she needed. Looking back I wish we had done it months sooner. After a rocky adjustment period she really plateaued and was as healthy and content as could possibly be expected. From what you have described your SIL's dementia has progressed and it sounds like MC might be more appropriate. There is always an adjustment period, she may be just as irritable and unhappy in the early days of MC, but with time should settle in. Given that she is already borderline for AL, it seems likely that by the time she gets through the adjustment she will not be able to stay there and you will be moving her again to MC which means more upset, anxiety, and stress for all of you. Personally I would rather get her to a place she can coast. Age in place and stay for the long haul to make that difficult adjustment period worth it. 

Gallmeiers

Thank you so much, MNChickadee. Everyone has been very helpful. Your response was especially helpful and enlightening. We met with AL director and nurse practitioner early today. They will now be serving as her primary care doctor. So they will prescribe drops for her eye and check for UTI and electrolyte imbalance. They told us they believe she is ready forMC. But they also believe that her anxiety level is sky high right now. So they want to take 2-3 weeks to reduce that before making a recommendation. They said exactly what you said: she needs the structure and organized routine/schedule of MC so that she doesn’t have so much time to stress, obsess, and develop additional paranoid delusions. They have already developed a care plan and are responding to our concerns after the first day. They also told us that she is trying to gain our sympathies by portraying the AL as bad people in order to get us to move her. The primary care dr will likely use a mood balancing drug to help her. With respect to smoking, we will ask cardio dr to tell her it is critical/ essential  that she quit smoking. AL employees said that most of her walks outside were not to smoke, but just walking. Her smoking seems to be anxiety driven, not nicotine driven. I told her last night that she could not go out after 7pm….that it was a hard and fast rule. This morning they told us she did not try to go out after 7. Hopefully that continues. We are so relieved after our meeting. We believe that the AL/MC are responding to all our concerns and will provide the help/ expertise that we do not have .

Gallmeiers