Newbie feeling alone

M1 · April 26

Cat, can you hire someone to walk with her? If she’s a risk to get lost, that is very much a concern. You’ve heard it said before: level of care needs to be set by her worst days, not her best. You might feel bad that she doesn’t have the same level of excursions, but you would also feel bad if she wandered and died of exposure. There are some awful videos out there. The Washington Post did a story last year about deaths of unsupervised residents in AL both in the cold and the heat. Not trying to be gruesome.

Keep us posted.

Emily 123 · April 26

Hi Cat,

Glad the move went well, the birthday plans sound nice!

I wouldn't be too alarmed about the garbled sentence if it's not frequent—my mom's done that once or twice. The first time was so odd to me—we were sitting out in the backyard and she came up with a sentence that was absolutely not related to anything we had been talking about, and it was as if she was pointing out something about the garden, but the sentence had nothing to do with it. She gestured at the garden and said something like 'the dog has brown spots'. And she repeated it word for word when I acted like I hadn't heard her. Then the conversation went on and she did something similar when she had a UTI a year or so later. Go figure.

What about an Air Tag? Those hadn't come out yet when my mom was staying with me, but I did use a tracker for when she would go on walks. Compliance would be the key and is the tricky part…

catminor · June 10

https://alzconnected.org/discussion/comment/207156#Comment_207156

Hey M1,

I finally just put my foot down with her about walking on the main street, and she isn't walking there anymore, or she's lying to me about it, which is certainly possible.

I can only control what I can. At the end of the day, I've made it very clear to her that the day I get a phone call that she's wandered off and not returned, is the day she moves to MC.

My Mom and I have always been very direct with one another. She gets it.

It is what it is.

Cat

catminor · June 10

https://alzconnected.org/discussion/comment/207182#Comment_207182

Hi Emily_123,

The move closer has helped SO much. Her birthday trip was really nice, for us both.

She's starting to struggle more with words, in general. Just got the CT scan results back - vascular. So, it makes sense.

Compliance is always the issue. But, at this point I've made it very clear to her that non-compliance isn't gonna work out in her favor. She gets that, so it's helping, for the most part, lol.

Take a very strong willed, stubborn, and very independent person, and tell them they are not to do something, lol. Yep, that's the struggle there.

At this point, I've just been blunt with her: her safety and ADLs are what matters to me. She does seem to get it, and is trying to, as she says, "behave herself".

I am all up in the role reversal now. But, that's OK and not unexpected.

Cat

catminor · June 10

Update:

Got the CT scan. Tuesday have the referral appt with my LO PCP. I hope to heck that he will finally submit the referral for my LO at the Memory Care Clinic.

CT scan results were moderate loss and broad vascular decline. Pretty much what I expected.

On Saturday, I leave for the east coast for a personal/family business mixed week. Finally got the ducks in a row to 1031 exchange the rental properties. That's the last big piece of life on the east coast.

It will probably be a crazy few months for me (again), but whatever, I can do it, mainly because I have no choice, lol.

I'm super stressed out, and have found it quite difficult to find a therapist. Not for lack of trying either. But, there's a few private pay practices that I'll check out when I get back from GA.

Wish me luck selling and buying properties, and finding a therapist, all while navigating the care needs of my high maintenance LO 😵‍💫😆🙂

CCat

CaliforniaGirl-1 · June 10

One of the hardest things is to stop trying to convince, get buy in, negotiate etc with your LO with dementia. Particularly when it's a parent. It's easy to get angry because they are: making things harder or not following through when in fact those functions are just gone.

They won't remember and often don't realize at this stage that there is any difference in their abilities and if they do, they will push back because lets face it, they are staring down a terrifying road.

We all struggle with it, at least partially because we desperately want that person we love to still be there and be capable of that.

catminor · June 11

https://alzconnected.org/discussion/comment/212324#Comment_212324

Thanks for your post. I'm sure you're right, and I'll check out those videos.

It's a complicated history with my LO. I'm just trying to do the best I can to help her enjoy life while she's still able to, and keep my head above water. It's like walking a high wire in a family circus 😵‍💫.

Cat

catminor · June 11

https://alzconnected.org/discussion/comment/212348#Comment_212348

Thanks for your comment. The frustration is real.

My LO knows her memory and functioning is declining. Of course she's scared, and fighting it with all she has.

I don't really feel angry, just frustrated often. My LO has always been a challenging person, so it just feels magnified as this disease progresses.

She's just a type of person that will fight hard to the end, and I get that. I know the RCF will call me when they see any issues that are cause for a move to AL or MC. Until then, iiwii.

lanie68ny · June 11

Hi Catherine, I am new here too. I too feel all alone. (I am an only child) so I guess we will do this together. Wishing you luck and peace.

catminor · June 12

https://alzconnected.org/discussion/comment/212499#Comment_212499

Hi Lanie,

We are definitely not alone, but I know it feels that way. Welcome to the forum; there is tremendous support, advice, and wisdom here from many good folks.

I wish you peace also.

Catherine

catminor · June 12

Finally got the referral from my LO PCP for the Kaiser Memory Care Clinic. He did the COG test with her; result was 2. He seemed surprised, which was weird.

I'll be calling the Clinic tomorrow to follow up and ensure they've received the referral, and set an appt for my LO for when I get back.

Progress towards diagnosis and any additional support, hopefully 🙏.

Cat

catminor · July 12

Today was my and LO first appointment with the Kaiser Memory Care Clinic. Amazing doctor. Wonderful experience.

Dr. said is likely Alzheimer's, not vascular dementia, based on all the cog testing and my LO stellar physical condition. I cried pretty much on the spot. I was hoping vascular, for reasons.

Changes what to expect, for her and for me.

Now I'm very sad, for us both.

I finally (good gawd!) found a therapist. Already scheduled for video session on Monday.

Oh, and an ex-fling, which is a crucial distinction, is (still) stalking me (since 2016 😆).

Sometimes, I just don't know diddly squat. Like, wassup Universe?

Know what I mean?

And then there's friends, which is really everything.

Cat

JM27 · July 12

https://alzconnected.org/discussion/66828/newbie-feeling-alone

Hi Catherine,

I too live in California and I am also the youngest of two children and the only caretaker for my father who lives in another state. I have flown back and forth monthly and sometimes more to check on him keep up with care, drs appointments, fiancaes ect.

I will now be bringing my father to live with me and my family in California, but with the advise of his doctor will be looking into MC facilities.

It has been an exhausting nerve racking struggle, but I will finally get him with me safe.

You are definitely in the right forum everyone here has great advice and are very supportive. I haven’t been on here long and they have helped so much!

Can I ask if you are northern or Southern California? Just curious of what facility as I am looking.

Blessing to you and your mom.

catminor · July 13

https://alzconnected.org/discussion/comment/215701#Comment_215701

Hi @JM27 ,

I'm glad you're able to finally move your dad close to you in CA. It's made a huge difference for me to have moved my Mom here close to me. I'm in NorCal - Sacramento specifically. I'm grateful to live in a metro area that has a huge selection of 3 tier facilities to choose from. My Mom is at an Atria facility, currently in Independent Living, and I'm very satisfied with their services, staff, support, and resident care.

Glad you found this forum too.

JM27 · July 13

https://alzconnected.org/discussion/comment/215709#Comment_215709

Hi,

I am in southern cal riverside county area. I will be looking into Atria near us. I have heard good things about it.

Newbie feeling alone

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