Tired of explaining

psg712

I'm really tired after my mom's first week in memory care. She is doing ok there but I had a lot of things to handle in addition to her move, so a bit wiped out here.

How do you handle questions and suggestions from concerned people in your LO's life who don't have enough contact to be realistic about the situation? I am tired of explaining the need to move to memory care, the fact that she is far past the capacity to reminisce, use a telephone, recognize names and photos. And so on, and so on. Even the request to "tell her I'm thinking of her" is a bit useless.

I don't want to be unkind to people who were important to her at some point in her life, but it hurts and exhausts me to answer all these questions. Even the friend who was most helpful to her when she lived in her own home, and who advised me that she was no longer safe there, now says she is looking forward to visiting her next summer and enjoying her company, "making small talk." Mom is barely talking at all! I will end up spending the visit consoling these friends when she doesn't recognize them. I want to be gracious but I am so tired.

Thanks for listening. Suggestions welcomed.

greenmum

Welcome to memory care! I definitely do not have the answers. I am struggling with the same issue. It's heartbreaking to talk about it over and over. Sometimes I say sure I'll pass that on or even tell them my mom says hi. Sometimes I tell it like it is and say you're not going to have the same conversations anymore. It depends on my mood.

machelriller

My dad moved to memory care in September and this has been and still is one of the hardest things for me to cope with. It’s gotten easier over time as I’ve adjusted to my dad’s new life in memory care and other friends and family have started to adjust too. I moved him five hours away from where he was before to be closer to me, so he’s only had one visitor so far, and I was really anxious but it went great. I think it helps me to remember that the other people in his life are on a journey to accepting this change themselves. Someone in my support group told me their mantra for these situations: “they mean well.”

I am also terrible at setting boundaries but I have been trying and it really helps. I try not to text/email everyone back right away. If a family member wants to talk on the phone and I don’t have the energy, I just tell them I’m too tired. It’s so hard but it will get easier. Good luck.

harshedbuzz

@psg712

It is exhausting.

When dad was diagnosed with dementia, mom and I agreed they needed move back to the area in which they raised me. They'd pretty much burned through their friends in MD, but the ones in FL were relentless in making me miserable. They were friends of mom's who mostly felt I was bullying her into moving which couldn't be further from the truth. Trust me when I say I loved it when they were happily snow birding. They also told me I should either allow them to spend the winter there and when I reminded them that mom almost died the year prior with dad as her medical advocate, they suggested I keep dad and send her alone. yeah no. Over time they drifted off-- a few passed and a couple moved back to live near their own kids.

The bigger thorn in my side was dad's brother. He tended to visit dad for 45 minutes after a round of golf with friends every 6 weeks when his guilt got the better of him. Of course, this was dad's best time of day and he showtimed for his brother. Combine that with his brother's denial and I got lots of unsolicited "advice". For him, I would patiently explain why decisions were made and when I couldn't deal with his nonsense I handed the phone to my DH to handle.

HB

mommyandme (m&m)

Would it be possible to create a group email or a group text? You could explain in one fell swoop and some questions or concerns many may have can be addressed more expeditiously. Just a thought. Sorry for these struggles.

M1

At Thanksgiving a clueless out of town nephew asked my partner if she liked her new MC better than the previous one (we had moved in April). She had no idea what he was talking about, since she has no memory whatsoever of the previous facility. These people....

Smilescountry

Both of my parents moved to a facility at the same time. Dad gets memory care, but Mom is in an apartment next to his and gets minimal assisted living. Mom had me help her write a letter to all of their friends explaining the move, and that really helped quite a bit. I still get questions, but they are much less frequent than they would be had we done nothing. However, it sounds as if you need some rest before doing anything else. Be kind to yourself. Also, my guess is that the friends will come around. It is difficult for them, too, to see their friends changing.

psg712

Thank you everyone. These are really good ideas, and I appreciate the stories too. It helps to know others have been or are handling similar scenarios.

M1, seriously. This is the type of thing. You'd think that the name MEMORY CARE would be a clue ... but no one wants to believe that someone they knew as smart and competent has that poor a memory. Ugh. And when I explain that she really doesn't recall what they are talking about, they try to suggest ways to jog her memory that are unrealistic. Then I am the doomsayer who doesn't believe in mom's indomitable spirit. Most of these people are long distance, since I moved mom 400 miles to be closer to me ... another reason her mind is failing, in some people's view, because I uprooted her rather than allowing her to burn down her house or be scammed out of her savings or sleep in her car in 10 degree weather.

Smilescountry, the most understanding person in my family has been my 95-year-old aunt (Dad's sister) who is sharp as a tack herself but cared for her late husband until he passed from Alzheimers. She gets it.

harshedbuzz

@psg712

I found the olds tended to defend their own even in the face of obvious dementia. You have absolutely made the right decisions on behalf of your mom. But for these ladies, one of their own is living out their worst nightmare the reality of which is too painful to accept.

One of two might be having a cognitive shift of their own. One of mom's most consistent cheerleaders was moved back to Chicago by his only child after a dementia diagnosis about a year after I sold mom's house. When I went down to clean out the personal belongings ahead of the sale, this man came over and went on a rant about how rude and obnoxious my dad was and how he hated him and would have nothing to do with him. Eight months before, I arrived at my parents' place after spending the day in the hospital with mom-- dad was hosting happy hour wearing only a bath towel and this guy was there singing old songs from WW II. He, at least, had pants on. Let's say I wasn't surprised the son moved him out.

My guess is that they'll fade out of her life as mom's Florida Crew did. Until then, it's OK not to answer when they call.

Hb

Emily 123

Hi psg12,

Well, first, give yourself the grace of a week or two off to wait on responding. You're exhausted, mom's safe, they can wait. A little space and time will let you regroup. I'm so sorry you have to deal with this--as if it isn't hard enough. It's always ridiculous when the primary caregiver becomes the sounding board for people to talk their way through to acceptance.

I sent the 'Understanding Dementia' packet and the Tam Cumming's checklist to everyone and asked them to read it, pointing out that Mom's safety needed to come first. I told them she was getting into stage 5, needing 24/7 monitoring because she would just try to go take walks on her own and get lost, and I couldn't work and monitor her. In a way I was lucky because my mom was older (90) when the wheels came off the bus, so her friends and neighbors reaction was basically to nod their heads sagely with an attitude of 'well, something's gonna get you.' They were unsuprised that something had finally caught up with her, and other friends in their group had had dementia as well.

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