Talking to Family

Gigi S

As of yesterday my mom has been placed in the memory care unit. Which is a big relief to me, she isn’t taking it super greatly which was expected of course, but she is in a safe space.

And so, now the flood of comments from relatives come in. “Oh, but everyone in there is elderly” “Oh maybe we can take her out”. Etc.

I explained, she is a young person with early onset, of course everyone is majorly going to be older than her. But her cognitive state is still the same as those other patients with alz.

They’re trying to tell me we can hire people for her and etc but after the checks I made previously there is only English speaking, and she is way reverted to her native language which makes her more aggressive with those who speak English as she doesn't understand them.

How do you prepare for these commentaries from relatives who, up to now, havent stepped up to take care of your loved one?? Anyone else have experience with this when moving their loved one into a home? Or any articles about it? Thank you!

M1

Good for you, glad for the update. I wish I had a magic answer for all the family comments, but just try to let them roll off. My brash Texas partner used to note that everyone has two things : opinions and a*holes. Would that they could keep their opinions to themselves.

Keep us posted how she does. The language barrier must be difficult.

psg712

Gigi, I'm so glad she is finally in memory care! I hope that she adjusts well and that you have peace with this decision.

My mom is scheduled to go into memory care on Monday after a 2 month stay in hospital and SNF for rehab. It's the same facility where she previously lived in assisted living, but at last there is a room for her in memory care. I am so thankful!

Comments from family and friends can be frustrating or hurtful, even when meant well. I've had several people mention to me that "it's so sad" that my mom is going there, and "those places are so terrible." I just have to shake it off and realize that most of these folks haven't seen my mom in years and truly have no concept of how impaired she is by the disease. Most of them change the subject as soon as I begin to give examples such as, she can't brush her teeth alone because she can't distinguish between the toothbrush and a razor (true incident). They just don't want to acknowledge that my once competent mother is no longer safe to be on her own. They also have a belief that all care facilities are huge sterile institutions, nothing like the small homey place where she is going.

Sometimes I just have to say, I know it's hard to picture her there, but it's the best place for her to get the care she needs. Then leave them to their own opinions. I'm not going to convince most of them. Her own brother continues to insist that there is nothing wrong with her and that it was cruel to move her from her own home 2 years ago. But he won't come to visit her now, because he doesn't want to see the truth with his own eyes.

Blessings on you and kudos for getting your mom to the safe place she needs! She is blessed by your courage.

Emily 123

Good for you Gigi. It's not an easy thing to do, and comments from the sidelines by folks who emerge after the heavy lifting is done are especially hurtful.

I would make sure that your mom is given time to settle in and not be taken out or have a lot of visitors at first. Your family means well, but they don't get it. Would sharing any of the packets below help them understand?

You're doing a good job in taking care of her. Sometimes you just have to let it roll off your back--it's very hard to do that because their comments will feel like criticisms, especially after going through an emotionally difficult decision like that. Don't let it get you down. Everyone here understands what you had to do, and you won't hear any second-guessing from us. You know your person, and you stepped up to make the hard decisions. Good job!

Understanding the Dementia Experience: 

https://www.smashwords.com/books/view/210580

Tam Cummings assessment tools/AD checklist

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

harshedbuzz

@Gigi S

Strong work you! Making placement happen for an EO parent as a solo exercise in the context of anti-helpers is quite an achievement.

I had an uncle who behaved as your family is. He was the one who didn't see my dad for several years when dad was in his obnoxious-unfiltered stage pre-diagnosis and the one who did a drive-by visit with my parents every 6 weeks or so during which he made notes about his concerns to share with me. The halls in the SNF to which dad was doing PT/OT after a hospitalization were "dark and kind of gloomy". "He's not ready for a nursing home" based on a noontime visit when dad was showtiming rather than smearing feces on the walls and threatening to kill mom in her sleep. His notion that "[insert name] CCRC would be nicer for them" despite having a $500K+ entry fee plus monthly charges in the context of dad losing $360K day-trading before he was finally diagnosed and mom wanting her own home. And his insistence that I was either "too poor or too cheap to get dad a TV" at a time when he couldn't differentiate between TV dramas and his own experiences. Around this time dad believed he'd been murdered and kidnapped after seeing NCIS the night before. My mom and husband both thought I was overstating this nonsense because I am not a fan of the brother. So I put him on speaker one evening and let them have an earful.

What helped was explaining the decisions were made at the recommendation of the doctor's at the top hospital's memory center and delegating his "suggestions" back at him which was remarkably effective.

"Dad can't operate a TV anymore so he could only watch if one of us was there and we'd rather spend our time together focused on each other. If you'd like to watch TV with dad, you could visit. The MCF has 4-TV rooms with various programming and a larger space that offers a daily matinee and snack time." Never happened.

"I'm sure dad would love you to take him out. Once the doctors say he's settled in, you should do that. I made sure I picked a MCF convenient for you (his town, so he couldn't bitch about distance) and added you to the list of people who can sign dad out." Never happened.

FTR, dad was only in MC for 8 weeks before he died from aspiration pneumonia. He was much further along in his disease progression than uncle believed. In those 8 weeks, he visited once. For 35 minutes.

In your shoes I would say "A [insert language visitor sounds like a great idea. I haven't been able to find one and I'm not sure mom can afford it, but if you'd like to make this happen, we'd be so grateful." Trust me when I say it won't happen.

In the meantime, maybe don't take all the calls. Perhaps you could limit yourself to the least obnoxious one Sometimes a cousin closer to you and your age can be a good conduit for information-- a family spokesperson if you will-- to keep the others up-to-date and limit your interaction with their negativity.

Hugs.

HB

Petulia

> @"Gigi S" said:
> As of yesterday my mom has been placed in the memory care unit. Which is a big relief to me, she isn’t taking it super greatly which was expected of course, but she is in a safe space.
>
> And so, now the flood of comments from relatives come in. “Oh, but everyone in there is elderly” “Oh maybe we can take her out”. Etc.
>
> I explained, she is a young person with early onset, of course everyone is majorly going to be older than her. But her cognitive state is still the same as those other patients with alz.
> They’re trying to tell me we can hire people for her and etc but after the checks I made previously there is only English speaking, and she is way reverted to her native language which makes her more aggressive with those who speak English as she doesn't understand them.
>
> How do you prepare for these commentaries from relatives who, up to now, havent stepped up to take care of your loved one?? Anyone else have experience with this when moving their loved one into a home? Or any articles about it? Thank you!

Petulia

I have now been dealing with the ever ending lace to put mom. My mother was doing pretty good at a nursing home who knew how to deal with some of her confusion having Vascular dementia, but after a week, the new place I had to put her in because Medicare was running out, I have received two calls from the director that my mom asks where her room is, or in activities she walks out of it, or she likes to walk the hallways, what???? I am feeling picked on and my mother is being picked on She's only been there a week and I didn't want her up in their memory care unit because it was a looney bin up there. It seems very exhausting to have to navigate through the system of these places so I am glad you found a safe place for your family member.

M1

Hi Petulia. It sounds like they are telling you your mom is not appropriate for assisted living. Was it the sight of more disabled people in MC that made it seem a "loony bin"? Most of us view our loved ones through rose-colored glasses and overestimate their abilities. That sounds like what is happening here. If your mom wanders, she probably needs a locked memory care unit to stay safe.

psg712

Petulia, it is upsetting to see people in memory care who are more impaired than your LO is. But there will always be a range of abilities and responses there. Maybe your visit happened on an especially bad day for a few residents.

I agree with M1. Your mom's safety needs to be the priority. Is there a manager or social worker in the memory care unit that you could talk to about your concerns with the environment on the unit?

Emily 123

Hi petulia

https://alzconnected.org/discussion/comment/195334#Comment_195334

You should have been given a copy of her care plan at the new facility--it's what the healthcare director there would have completed at intake to assess what level of support your mother needed from the staff.

Some AL's only provide a very modest level of support, despite seeming to say they can provide more. The communications from the director seem like there are expectations that she interact like a person without dementia, and that they can't support her in their regular community. I would ask to review the care plan with her and what behaviors they can and can't handle out in the general community.