When to reconsider Memory Care?

dbarrylewis

I've written a few times before about my mother's difficulty adjusting to the memory care facility and a worry we placed her into one too early. In the past the recommendation was to wait longer for her to adjust.

We're at the ten week point and I'm still struggling. On the positive side: my father was her primary caretaker and he's looking much healthier, the facility is much better at helping her maintain good hygiene, she has daily interactions with other people, she no longer has the worst of her delusions that occurred at night when she was at home and often left her frantic. On the negative side: she has continued to lose weight, she expresses extreme sadness on most visits (not all, but most of them) and still pleads to know when she'll be home, and recently her agitation has ramped up to the level it was at home where she threatens to strike people with her cane and will push back at them.

We just began her on an antidepressant last week. The hope is that it will address both the sadness and anxiety (atypical depression). The issue I'm having is that she was very unhappy at home and agitated. The delusions at night were awful for her. BUT there were happy times that we no longer see. She loved her cats and when family arrived. She doesn't have these experiences anymore. It just feels like she's declining quickly due to the stress.

I want to propose to my family that we bring her home with the following two changes (1) bring in in-home care - I've found two reliable people using references and (2) consider an anti-psychotic to address the late-night delusions if she begins to have them again.

I miss seeing her truly happy. I feel like I'm constantly tricking her to be okay where she is (e.g. you'll be home when we work through the meds, …). It's an awful feeling.

Has anyone else had experience bringing someone home from memory care? Did they do something similar (line-up in-home care and change medicines to help control behavior)? I asked a support group lead last week and she said families often return to the desperate position they were in before and need to repeat the cycle, making it even more stressful.

Any advice would be appreciated!!!

Thank you!!

H1235

I would point out that she is only going to get worse. While some of the changes you’re suggesting may help temporarily they won’t work for long. Change is also very difficult on a person with dementia. A move to mc then a move back home and then another potential move back to mc (when things get even worse) is a lot of moving. Medication has side effects. You’re suggesting pretty strong medication just so she can be home. Is it worth it? Antidepressants can take a while to work and they are usually started at the lowest dose and increased as needed. I would give it some time. You might try bringing in some of her favorite foods, treats or visiting during meal time to make sure she is getting enough to eat. Ask the mc if you can bring her cat in for a visit. You should also consider your dads health (physical and mental).

psg712

I don't have experience with moving someone back out of MC, but I agree with H1235 that you need to consider future progression of your mom's dementia. At some point, she may not recognize home as home anymore. We used to bring my mom over to my house every Sunday for brunch. After a while, she was more anxious being away from her usual room and routine in MC. She would ask me whose house it was and if the same people still lived there?

I'm afraid that if you move your mom back home, you're going to have the same challenges that you did before. In-home caregivers will be strangers to her, and it could become a revolving door of different people for her and your dad to adjust to. In my experience, less is more when it comes to medications.

Her care needs will become more intense as time goes on. It's a sad and frustrating fact that as the disease progresses, keeping your person happy is no longer a reasonable goal. Regardless of the setting, affect flattens and emotions, when they surface, are more likely to be negative. That said, in the later stages they have less awareness of their losses and can be more complacent. I hope you find a solution that works well for your family.

April23

Your father’s health (and your mother’s hygiene) are very important things to consider. You can’t have it all I’m sorry to say. I think it’s highly likely that a move and a revolving door of unknown caregivers will not have the desired effect. (It’s highly unlikely that just two will be enough, what happens when they get sick, they have car trouble, appointments, etc.?) There are many stories here of PWD rejecting in home caregivers because they do not understand the need for them and never will. Do you plan to have them at night? I certainly hope so for your father’s sake. Anti-psychotics are an entire conversation all on their own and must be used with extreme caution.

Depression, apathy/withdrawal and agitation occur in PWD no matter the setting (as you have already seen). There was a reason you placed her and while I understand your guilt and sadness over it (we’ve all been there), you should not let that cloud your judgment. No matter how many times you ask the question, the reasoning doesn’t change, I’m sorry.

notequipped

Agree with what everyone else has already said. Just wanted to add that weight loss is a common symptom of Alzheimer’s as the disease progresses although it can be an early indication of the disease, too. My Mom is not yet in AL or MC but has already lost a significant amount of weight. Her primary care has started to see her every 3 months to keep a close eye on the weight loss.

BCass12

Your story is so similar to mine that I had to double-check that your post was not from one of my siblings. My mother also struggled to adjust to MC. Finally, my sister had an honest talk with her, saying that you cannot go back to your Senior Apartment because you now qualify to be here. They will not take you back there, as they are not equipped to help you in the way that MC can. She turned a corner for ahwile and seemed more accepting of her new life in MC.

However, lately, she says she wants to leave again, but strangely she is asking to move into the building in which she currently resides. Her disease is telling her that she is somewhere else apparently. I have often struggled with guilt that we moved her in too early, but her poor vision (macular degeneration) and declining cognitive ability/memory made it clear that she needed more support. She would have been far more isloated socially had she moved into my home. Even if we had hired someone to be her caregiver during the day and/or night, her interaction would have been limited to me, my husband and that individual. At MC, she meets many people, and the staff is mostly very kind and attentive. Also, as her primary caregiver before, I am relieved to know she is safe and getting the best care given her situation.

She's at the stage where she knows she's aware of losing her memory, which is hard to hear her talk about, but it's her reality. She still loves being read to and understands humor, complex thoughts and beautiful writing, even if she can't express it herself. I also scribe stories that she tells from her childhood. I post them online for my sibs to read to her when they call or visit. Last, I hired a therapist who does weekly home visits and who also happens to be a death dula. She is wonderful and my mom looks forward to their discussions. I have also asked local family members if they could schedule regular visits, so that we can share the responsibility of visiting my mother. It was falling mostly on me before.

Despite the paranoia (some staff hate her or mock her, steal from her, she says), she still has happy moments. It's a very hard to feel powerless over this disease, to watch someone who was an avid reader, smart and funny, proud and independent be in this siutation. It helped that the progression happened slowly, and that we have a diagnosis, so we can continue learning about it. Still sad, though.

Quilting brings calm

I notice that you said you want to move her home. You didn’t say what your father wanted…. The person who is looking much healthier now that he’s not her caregiver. At least 1/3 of caregivers die before the person they are caring for.. often because they aren’t taking care of themselves. We have a saying here: the disease is going to take the PWD, don’t let it take the caregiver too.

My parents told their doctor they weren’t happy in assisted living. That doctor told me I wasn’t going to be able to make them happy because they were no longer capable of that - what I could do was keep them safe.

You have been given good advice by the posters here. Leave her in MC, but try to figure out things to do such as bringing her ice cream, coffee, etc.

harshedbuzz

@dbarrylewis

This disease is going to take one of your parents; don't let it take both. Even if you have the means to provide 24/7 care in the home, the stress of living in a one-bed nursing home would not be healthy for your dad. And then what? What if he's one of the 1/3 of caregivers who dies before the PWD? Do you move in and put your life on hold?

The reality is that sometimes safe and cared for is as good as it gets in late-stage dementia. The weight loss is to be expected in later stages. With my dad, his digestive system didn't effectively extract calories and nutrients from what he ate. He lost probably 50 lbs in his last year. Thirty of those in the last 2 months. Sometimes Ensure can be offered, but we found dad more likely to accept thinks like milk shakes and sweet treats.

I'm sorry. Every facet of this disease is horrible.

HB

Victoriaredux

You moved her for your Father's health -and for your Mother's safety . Both goals met, not easy.

Happiness for her is a quicksilver goal.

Maybe she'd like one of the "Joy for all" cats .

dbarrylewis

Thank you for all the responses. My father is doing better in many ways but he is also weighted down by how sad she is and her weight loss. He is looking to me and my siblings to help him decide what to do.

I agree with the points being made. Our plan is to give it more time and pray the antidepressant will help her.