Memory Care(6)

Jenna_

My grandmother (I call her Maw Maw) has moderate stage Alzheimer’s. She was officially diagnosed in June 2021. She is almost 89 and lives with my Grandpa who is 87. Until the last month or two she was relatively stable with a slow progression and he was able to handle everything. Starting late April/early May she started progressing more quickly. At this point, she nearly never knows he is her husband. She is constantly asking to go home and does not recognize her home as her own. She still knows exactly who my mom, my sister, and I are and wants us to take her to “her house”. We rotate seeing her at least every other day and she even gets mad at us sometimes when we won’t take her home with us because she cannot understand that she is in her home. Today, she was worse than ever and I had to have my mom come help me as she walked out the front door and refused to come back in. She was threatening to leave and walk home. My grandpa is doing his best and has every safety measure you can think of in place to keep her in the house but he is not a young man and is exhausted. When we discussed memory care she begged for us to giver her another chance. We tried to explain that we just want to keep her safe but her pleading for a chance to stay home was heartbreaking. I am afraid placing her in memory care will kill her. How did you all know it was time?

ladyzetta

Dear Jenna,

When they start wandering and you can't keep them safe it is time. Her illness will also affect your grandpa. She is at the point now I feel she needs 24/7 care. Your grandpa is not capable of doing that. 

Maybe you can find a caregiver to come into their home and help your grandpa. When it was time to place my DH, he needed more care than I was able to give him. It was not a discussion with him.  It was something I had talked to his doctor about. I made the decision alone and placed him. It was a hard thing to do but for his safety as well as mine it had to be done. 

Take care of your grandpa. Hugs Zetta 

May flowers

Welcome, This is a really hard place to be at and I’m sorry you’re dealing with it. 

For my FIL it was two things - extreme boredom and being a flight risk. 

One thing I thought was sweet was there were residents at AL who had loved ones in MC. They got to be together every day and meals, is that something your grandpa would consider?

Daughter80

So hard. Moving a LO to MC is dependent on each family I think. It depends on what care a family is able to provide, what is needed and if safety is an issue. My mom is only 67 and we just placed her a week ago today. Hardest thing I’ve ever done, but she actually is so safe, entertained and cared for there. She is adjusting well. By day three she could articulate that she felt safe there. She knew before that she could not leave her apart for fear of getting lost. She lived with my aunt who is 77 and it was so much on her even with me taking my mom 4 days a week. Best thing we did was fib about the move. We blamed a plumbing issue so she had to move while they worked on the plumbing and this would only be temporary. The therapeutic fib eases her anxiety any time she asks. Others blame doctors. Anything that is not your fault and not hers either. In reality it’s the disease anyway. Maybe we can think of dementia as “the plumbing” “the doctor”. Then you’re not even fibbing. Have you visited any MCs?  They surprised me at how nice they could actually be. I actually feel like my mom is happier there because they keep her more engaged. And she is social and likes to tell her same stories over and over and there are lots of people who can listen. Once we moved mom I’ve been shocked to see how she really fit in. I thought she was much higher since she is very verbal and “presents well” I had dreams nightly for the month prior as to how she would respond and none were good. But things have all gone smoother than I could have ever imagined. Still very hard.  I would not include her in the decision since no one would likely choose MC but no one would choose dementia either. I worked with the staff and had a solid plan for when and what to tell my mom. I have visited daily and continued to have my aunt visit and her previous caregiver visit. I have taken her out to church and out for coffee. All things we do normally together. Some places said not to visit for a week and I am so glad I found a place that said to continue to visit and carry on as we would normally. I think that has helped with the adjustment for her. I hope any of this has helped you. Blessings on you and your family as you continue to care for your Maw Maw wherever that may be

GothicGremlin

I'm so sorry this is happening with your grandmother.

As for me, I knew it was time to place my sister in memory care when the house just became too overwhelming for her. She'd get lost in the house - she couldn't find the bathroom, she couldn't find her bedroom -- stuff like that. Then, as she put it, "I don't know what to do, or how to do it." She'd end up just standing there or pacing, wringing her hands trying to figure out what to do. It was very stressful and frustrating for her.

Memory care is so much more manageable for her. She still gets lost there - she has no idea where her bedroom is - literally 12 steps from the dining room. But she's got lots of caregivers to help her navigate. She's looked after 24/7. 

And yeah, the wandering.... I had no idea what it was going to be like until it started. I wondered how I'd know when she started wandering. Oh boy, did I find out. A wandering dementia person is a lot like herding cats.  I'm so glad my sister is safe.

ButterflyWings

So very sorry you and your family are going through this. Dementia is just terrible. I agree with the others. She needs 24/7 supervision and a secured location. 

I am more than 25 years younger than your grandfather and trying to keep my exit-seeming spouse in the house and safe, is wearing me out. It has required daily medications (Seroquel) for his delusions and hallucinations. Lots of sleepless nights. And that’s not even counting all the physical care, incontinence cleanup and struggles over not bathing, etc. etc. And struggling with the soul crushing loss of the love of my life. He refuses to go anywhere with me like grocery store, post office, etc.but wants to wander or leave on his own many times a day.

Aides have been difficult to find or keep, in part due to covid. Your poor granddad. He and she need round the clock help, urgently, and it’s best to stop trying to reason with her— her reasoner is broken. Try to take care of yourself too. 

harshedbuzz

Jenna_ wrote:

My grandmother (I call her Maw Maw) has moderate stage Alzheimer’s.

Hi and welcome. I am sorry for your need to be here but very glad you found us.

She was officially diagnosed in June 2021. She is almost 89 and lives with my Grandpa who is 87. Until the last month or two she was relatively stable with a slow progression and he was able to handle everything. Starting late April/early May she started progressing more quickly.

Sometimes the disease does progress like this especially if there is some vascular dementia in the mix which may be more common than having Alzheimer's alone. It may be useful to be familiar with the stages of dementia so you can anticipate needs and have a care plan ready. 

Stages of Dementia Dr. Tam Cummings

At this point, she nearly never knows he is her husband. She is constantly asking to go home and does not recognize her home as her own. She still knows exactly who my mom, my sister, and I are and wants us to take her to “her house”.

Not recognizing a spouse or home is a late stage symptom. While it's nice she knows who you are, it doesn't in any way negate the fact that she's unable to reliably identify her home or life partner. 

FWIW, the cardinal rule of dementia fight club is that one never reasons with a person who doesn't have a broken reasoner. When she starts expressing a need to go home, don't try to convince her she is home it'll just agitate her further as it conflicts with her reality. For some "home" is their childhood home where they felt safe. Speak to her emotion "Yes that would be nice" and redirect with a vague promise to do it sometime later "perhaps tomorrow when the weather is better" or "after I've had the tires checked". And then pivot to something pleasant- "I brought cookies-- your favorite". 

We rotate seeing her at least every other day and she even gets mad at us sometimes when we won’t take her home with us because she cannot understand that she is in her home. Today, she was worse than ever and I had to have my mom come help me as she walked out the front door and refused to come back in. She was threatening to leave and walk home. My grandpa is doing his best and has every safety measure you can think of in place to keep her in the house but he is not a young man and is exhausted.

He needs more help than a thrice weekly pop-in visit. I would start with a HHA 3 times a week to get the man a real break or perhaps one of you could give him an entire Saturday or Sunday to recharge his batteries for the week to come. 

It sound like your grandmother is sundowning and might benefit from some psychoactive meds to lessen her anxiety and behaviors. This could help your grandfather keep her safe and well cared for. A geriatric psychiatrist is the best professional for this sort of medication management. 

If you haven't seen this, it might be helpful for you.

Home | Thoughtful Dementia Care (understanding-dementia-experience.com)

When we discussed memory care she begged for us to giver her another chance. We tried to explain that we just want to keep her safe but her pleading for a chance to stay home was heartbreaking.

This falls under the cardinal rule against trying to reason with someone who has a broken reasoner.

Please stop discussing a MCF with the person who clearly needs more care than her elderly husband is able to provide. She likely has anosognosia and is unable to appreciate how impaired she is-- in her mind she's just ducky-- as capable as ever. Trying to convince her otherwise will feel like gaslighting. 

If her care needs are more than her DH can manage without endangering his health and well-being-- then a MCF makes the most sense and the family needs to make that happen without the input of the PWD. When dad was more than my mom could handle, we took him to a MCF with a fiblet about his doctor ordering a PT stay to make him stronger. 

I am afraid placing her in memory care will kill her. How did you all know it was time?

This is your grandfather's call to make at the moment. If he can no longer keep her clean, fed and safe without endangering his health, she needs a more comprehensive care situation. That could be in-home aides or a MCF. 

MC won't kill her. She could die if she escapes while he's sleeping or showering and gets lost or runs into a bad actor. Her care could kill your grandfather; 1/3 of caregivers die before their LO.

I knew it was time for dad to go to MC when his care was impacting mom's health. I didn't know how badly it impacted her despite being there almost daily. She neglected some routine care and ended up with a preventable vision loss in one eye which has robbed her of driving and the independent life she looked forward to when her 10 years of caregiving were over. 

In your shoes, I would encourage your mom to craft a Plan B. She needs to be agent on her dad's POAs and secondary on her mom's. She should also be informed of their financial picture so that she can take over should her dad be unable to continue because of death or disability. And she should have toured and vetted her top 3 choices for a SNF and MCF in case she needs to act on the fly if dad breaks a hip or has a stroke or worse. 

HB

Jenna_

Harshedbuzz - I’m sure you’re trying to be helpful but this reply is coming off rather judgemental. We are not just popping in 3 times a week to say hey. We are spending hours at their house and taking her off his hands on Saturdays. My mom, sister, and I work full time and are doing the absolute most we can for them right now. We signed POA papers last year once we knew her diagnosis. And yes I would agree it seems as if her not recognizing her spouse would be a late stage symptom but she just had her check up evaluation with her neurologist and was categorized as moderate stage. Please do not insinuate that I am unaware of her situation. This is ultimately my grandfathers decision on what to do and I have to honor him.

harshedbuzz

Jenna_ wrote:

Harshedbuzz - I’m sure you’re trying to be helpful but this reply is coming off rather judgemental. We are not just popping in 3 times a week to say hey. We are spending hours at their house and taking her off his hands on Saturdays.

I am sorry you felt judged. It was not my intention.

May flowers

Jenna. HB is straightforward and to the point but her advice is priceless, and I’ve never known her to be judgmental. I remember back when I was considering MC for my FIL, her advice was spot on and I wish I had taken it more to heart!

It’s clear you love your grandparents very much and want to do what’s best for them. It’s a hard road (((hugs)))