What does it mean to accept "aging"? 💦

For one week, from November 8th to the 13th, I brought my aunt, who had collapsed from a second cerebral hemorrhage and is now living in a "nursing home with care services," to stay with us at our home.

When she first collapsed (about 10 years ago), she was diagnosed with higher brain dysfunction, but she had been living alone while using an NPO for guardianship agreements and utilizing ward services.

Although she looked normal at first glance, from that time on, she had symptoms such as
1. Suspecting others
2. Misunderstanding
3. Making assumptions
and so on.

She would say things like, "They only clean in circles," or "They broke the curtain rail," and had me change the helpers who came multiple times, until eventually, she refused to have helpers at all.

I told her that if she didn't want people coming over, I at least wanted her to connect with day services or rehabilitation for the sake of being watched over, but
she wouldn't participate, saying that going out and interacting with people was a hassle. She also stopped receiving nursing care certification, her long-term care insurance expired, and her relationship with the ward became distant...

She stopped sending New Year's cards and cut off her connections with people. She also canceled her mobile phone, saying she didn't want friends calling her and couldn't use it anyway (though she used to be able to send emails on an old flip phone).

I recommended that she purchase meal delivery services (because I thought it was important for her to interact with someone, no matter what), but she refused to use them, saying she wanted to choose what she ate herself.

Her life was almost entirely spent just watching television.

When I met her occasionally, she would complain about someone or suspect others, and I noticed burns on her hands and feet. Just as I was worrying about whether she was okay living alone, she had a second cerebral hemorrhage this January. This time, the bleeding was near the cerebellum, causing unsteadiness, mild paralysis in her limbs, and numbness, so the doctors and the hospital determined that living alone was no longer possible.

When she was first hospitalized, I was relieved to hear that she would be able to move to a "convalescent rehabilitation ward" within the hospital, but we were suddenly urged to discharge her (a terrible infectious disease had spread, and there was a shortage of empty beds). By the time of her discharge, our family found a "nursing home with care services" that we thought was best for her, and she moved in this February.

After she was hospitalized, I went to my aunt's apartment and found the refrigerator almost empty. There were no vegetables, but the freezer was packed with frozen foods, and vegetable juice was being delivered. (Even now, my aunt says she was getting enough vegetables because she was drinking vegetable juice.)

One drawer was filled with a mountain of medicine she had forgotten to take, and the drawer was also full of unnecessary items; it seemed she hadn't been able to organize things very well.

Even so, the room was kept neat and tidy, maintaining the aunt-like space where she could live comfortably, so I think she was managing her life alone in her own way.

She went to her medical appointments properly, was able to do things she had learned in the past like riding the train, and was taking out the trash, so I could see she was trying her best to live.

When she moved into the home, our family chose a high-end facility (with an advance payment of about 12 million yen), keeping in mind that she might spend the rest of her life there. (Her care level wasn't very high, and according to my aunt, it didn't smell.)

The various things I have done before and after her move are included in the articles below.
However, please note that these articles are not just about my aunt. m(__)m

Since moving in, due to the spread of infectious diseases, there have been many restrictions on going outside the facility. Especially since the summer, after an infected person was found within the home, even the online meetings through the window were stopped, and she was confined to living only in her private room. Even if the emergency situation of a cluster was avoided, measures have not progressed much.

Furthermore, at our own home, my younger brother was hospitalized with a "subarachnoid hemorrhage," requiring surgery and rehabilitation, so there was a period where we were very busy and couldn't do anything for my aunt, and it seems she spent that time thinking about various things on her own.

In particular, even though it was something she decided herself, I think she started wishing to "go back to my apartment and live freely alone like before," feeling as if the apartment had been hijacked because my eldest son is living in the now-vacant apartment.

She keeps saying, "Tell my eldest son to move out so I can go back!" (My eldest son just moved in this May, and he is paying rent to my aunt properly, but...)

When I brought her here this time and showed her the things I brought from the apartment,
she got angry, saying, "I never told you to bring all this," and no matter how much I told her, "Renting it out to someone means clearing out the belongings," she couldn't understand.

She cries, wanting to return to the scenery of the past. She wants to go back to that room.

She protected her own castle alone; she knows that thing was stored there, and that thing was over there.
It is painful and sad for her that those things have changed.

Because she wants to go home, she keeps badmouthing the care home.

“There is no freedom”→ Originally, it is a home with a high degree of freedom, and while it is unavoidable due to infection control measures, she doesn't understand even when I explain it.

“The food is not good”→ My aunt says they don't serve meat or fish, and no curry or noodles either, but when I checked with the home, they said they do serve those things.

“It's only people with severe dementia, they defecate while eating, and syphilis is spreading”→ That home has many independent residents and those requiring support; if you include up to Care Level 1 (my aunt is currently Care Level 1), they make up half of the total, and the average care level is 1.8. Compared to facilities near Gunma, the care level is low, yet she criticizes the people with more severe conditions, makes up delusions on her own (e.g., syphilis is spreading so she only takes showers and doesn't bathe—she heard on TV that syphilis was spreading and became convinced of this), and criticizes the staff. It is heartbreaking to listen to my aunt's complaints.

“The doctors and social workers at the hospital where I was admitted made the wrong, bad decisions”→ She says the people who decided she couldn't live alone and introduced the facility are the bad ones.

Back then, she certainly needed rehabilitation, but now she insists that she has recovered and can live alone.

Honestly, she hasn't recovered at all; I think it's progressing, and when I ask the people at the home, they tell me, “She misunderstands that she can do things because we are supporting her with everything.”

I understand my aunt's feelings, too.
She wants to go back to her own home.
She doesn't want to be in a facility.
No matter how good the service is, she doesn't feel like she is living.

Of course, if you are Care Level 1, there are many people who live alone with family or while receiving various types of support.

But in my aunt's case, her family is far away and cannot provide support in an emergency, and
considering her way of walking and her current state of brain and cognitive function, I want to check if she is really Care Level 1, and we believe it is impossible in her current state.
By the way, I have asked her to undergo a care certification assessment next January, and if possible, to have a brain examination as well.

At each point in time, I have tried to be close to my aunt's feelings and have made the best decisions I could.

“Being close to her feelings” means,
even if I think it's impossible, should I support her wish to be able to live alone,
or should I keep telling her our belief that living alone is impossible?
I am conflicted.

Perhaps because I choose my words carefully and speak softly so as not to just say “impossible,” she ends up thinking she “can” do it...
It is difficult to know how to communicate this.

Of course, I am her guarantor (guardian), and even if my aunt makes a fuss, if I don't process the paperwork, she won't be moving into an apartment to live alone.
I could push our own wishes through.
I could also ignore what my aunt says.
But doing that would be too sad. I want to protect my aunt's best interests, and I want to accept my aunt's feelings as much as I can... But. But....

My aunt also says, “If I live alone in an apartment and find out it's impossible, I will finally enter the facility you found for me and let you take care of me.”

In my aunt's mind, that makes sense.

But it feels like everything I have supported her with from A to Z has been denied, and it is heartbreaking and pathetic.
(Of course, my aunt does express gratitude for this trip, for the time spent here, and for my husband picking her up and dropping her off, but...)

And, explaining the situation to my eldest son to have her move again,
moving from the current home to an apartment, moving the luggage that is here,
and if it doesn't work out, moving everything back here again,
my aunt cannot think about the labor involved in that.

When I talk about that, she says she will do it all herself, saying things she cannot actually do.

Even though we have already transported a lot of winter clothing by car this time...

It might be imprudent to say this, but
I find myself wishing that the cognitive decline would progress further and that the body would become even less capable.
The current state, where they look capable at a glance, yet are unable to understand themselves or make judgments, and interpret things in their own selfish way—this is the most painful situation for both the person themselves and the caregiver.
It is difficult because they still have moments of clarity and their emotions remain intact...

In addition, both my aunt and my mother (my aunt's older sister) are elderly.
My mother will be 89 soon.
I want my aunt to stop trying so hard, to rely on others, and to live her life while staying connected to us.
Because neither of us knows when or what will happen.
Even when I say that, my aunt doesn't seem to grasp how I feel...

Therefore, so that my mother and aunt can live together, I am making this final proposal:
First, as soon as possible, why not try living alone at this 'Service-Supported Housing' (which is more flexible than a paid nursing home), and then, once my eldest son moves out, try visiting the apartment or living there for a few days?

If she can understand that, I am more than willing to provide the necessary support.
However, I cannot bring myself to ask my eldest son to move out less than a year after he moved in, so I told my aunt that she must wait at least until next November. (Considering my son's busy season, etc.)

Because my aunt is asking my eldest son to move out after only a year and a half due to her own wishes, my mother says she will pay the compensation to my son on my aunt's behalf. (My son had to dispose of his refrigerator, washing machine, microwave, etc., to move into my aunt's apartment, which incurred disposal fees, and the move itself cost money and effort.)

My aunt should understand how difficult it is to move, yet she doesn't.
She is trying to force her own will.

What is the right thing to do, and what should I use as a standard?
The sadness of being told as if putting her in a home was a bad thing, even after doing my best,
But still, she is my precious aunt, and the pain of having to accept that this is because of her illness...

This time, I have included personal information that I haven't written about before.
I hesitated to make it public, but I am posting this with the hope of hearing some advice or encouragement, and the hope that my experience might be useful to someone.
Thank you in advance. ☆彡

Thank you for
listening to
my painful feelings this time.
m(__)m

Even though I shouldn't be physically tired, I felt mentally exhausted yesterday, so I spent the day relaxing. (Though I did go for a morning walk and harvested taro (lol))

Today, I went to the bank and the post office, and then went to Curves.
I felt that moving my body really helps me stay positive rather than brooding over things in my head (*^-^*)

So, I will continue to do my best while also taking care of myself (^^)/

#Aging
#HigherBrainDysfunction
#PaidNursingHomeWithCare
#AuntsWishes
#FamilyConflict
#TheBestPath