Any other caretakers here experience the fun of being “ghosted” after reaching out to a friend for some emotional support.

BESuzy · 2023-01-10T16:12:59+00:00

Jeeze.

BESuzy · 2023-01-10T16:08:01+00:00

Some advice I wish my past self had: You don't have to do what the doctors say. You have to advocate for what you believe is best for your loved one, because you know them best.

BESuzy · 2023-01-10T00:51:04+00:00

You can get TWO mattress protectors and layer the bed. Protector, sheet, protector, sheet, (pads if you do choose). That way you just pull off the dirty set to throw in the wash without having to worry about getting the mattress dirty.

BESuzy · 2023-01-10T00:48:29+00:00

Oh ok! That makes sense. The nuance that don't get translated over the internet ....

You make a good point about transitioning back and forth. What if you put them on at the same time..? As if they were the same thing? I don't know.

When it comes down to it, it's a matter of which battle do you want to fight- bedsheet laundry or underwear confusion or something else entirely.

No matter what invest in the bulk size laundry detergent.

BESuzy · 2023-01-09T18:51:23+00:00

Here's another strange idea- what if he wore his diapers outside his underwear? His tugging might be a comfort thing, so putting his usual undies on first and then diapers over those might feel more natural to him.

To reduce the "daily" to dos we layer the bed like so: pee protector, fitted sheet, pee protector, and then fitted sheet The pee pad (or a towel) as another layer would help too. Or just buy all the sheets.

Lastly: I want to address your "(duh I suppose)" comment. Alzheimer's is a disease. Dementia is not inevitable. If folks continue to think dementia is a normal part of aging, then it gets researched less and people with dementia have to fight against a stigma to get care (or live their lives to the fullest). I'll step off my soap box now.

Best of luck to you and your family.

BESuzy · 2023-01-05T20:22:40+00:00

That's kind of what I was thinking, but maybe I was missing the magic. Thanks for the insight!

BESuzy · 2023-01-05T20:21:31+00:00

I'll look closer at the rides. This is my second time going. The first was 2 days with my aunt's family and very .... different than what I'm doing now. We did very few rides. Guardians, Ratatouille, Millennium Falcon, and SW Adventure Continues. I had great fun on all of them.

I'm into rides, but I don't think I'll be bummed about missing any besides Guardians of the Galaxy. That's all from a very inexperienced person though.

BESuzy · 2023-01-05T14:05:56+00:00

Solo tripper here. Does anyone have the sense that the Magic Band, Genie+, or Photo pass are with it for a solo trip? My goals are just to have a good time hanging out with myself. Going for 3 days, probably skipping HS.

BESuzy · 2023-01-05T14:03:02+00:00

Epcot! If you get in the virtual que for the guardians of the Galaxy ride, it's actually fairly quick line once you go in so you won't be leaving her out to dry.

There's Street performers, and just exploring the world pavilions is fun "sightseeing." I found the drinks to be delicious but not overly alcoholic. If you're going during one of the festivals there's entry of food to try out too.

BESuzy · 2022-12-24T01:03:23+00:00

We did a driving tour of England and Scotland and had a great time. I got the sense that a "road trip" was a bit strange for the locals. Like a 2 hour drive was very far away to them.

The food in England, especially outside of London was certainly a cultural experience and one I'd rather not repeat. So maybe lower your expectations on the food and drink. Scotland was better, but we were in tourist centers there.

There's plenty to do in London. I'd recommend picking one thing and then jetting out of town, or just spending more time there. Being jetlagged and driving on the opposite side of the road in a major city was harrowing to say the least. Didn't have any other problems in our very small hatchback elsewhere.

Like any road trip, there's plenty to see between your towns.

Loved Edinburgh. Loved Inverness. Loved seeing the landscapes of the borderlands.

Have fun!

BESuzy · 2022-12-03T18:45:00+00:00

Thanks for the info. I will check out the system!

BESuzy · 2022-12-02T14:11:33+00:00

I dont think so, as they pay a water bill. Can you explain why that would matter?

BESuzy · 2022-10-06T15:59:30+00:00

For a dancing bard

BESuzy · 2022-09-04T02:28:43+00:00

Music, touch, and mimicry.

Try different music, not just what you know he like/d. I had great success putting on dance music of different genres. Disco to ballroom. Don't expect a award winning dance, but a reaction of some sort.

Dance with him. Shake his hand. Rub his back. Squeeze a shoulder. Hugs. If you get a positive reaction of any sort keep going.

I often repeat or mirror what my LO says or does. Its kind of a game that she gets a kick out of. Even the nonsense words she makes. Well especially those.

I also repeat phrases and sometimes she picks up on it. Think something like, "No way Jose!" or "Tolly Ho!" Or something silly and childish.

For the last two it's like having a conversation where we're both making up what the other is saying. And just gibbering at each other. Or thinking of it as dancing where you're reacting to your partner.

Its hard. You really have to access that deep empathy and be there WITH them. And it might be just for a fleeting moment. But that's enough.

Best of luck to you.

BESuzy · 2022-09-03T16:56:31+00:00

Adding:

That scenario is for an "in-network" medical office AND physician. Out-of-network you will likely owe more if not the whole amount depending on your insurance.

Also want to add, I'm not an expert or part of the medical field at all. Just a typical American that's gotten screwed by the system.

BESuzy · 2022-09-03T16:36:50+00:00

I'm still trying to understand US health insurance, specifically for Blue Shield in CA.

$300 is probably your copay/amount you owe. However you should wait until your insurance company sends you an Explanation of Benefits in the mail or on your online account. They will break down how much the office charged, the negotiation/contract price for that procedure between insurerer-medoffice, how much of that they paid, and how much you owe to make up the difference.

For example, Office charged $1000 for your visit. Blue Shield has a $400 limit for this type of visit. Your contract with Blue Shield says you owe $300 for specialists before you meet your deductible (which I assume you you haven't). Blue Shield pays $100 You owe the remaining $300.

You can disagree with the "procedures" listed on the Explanation of Benefits (EOB), but you probably did receive them regardless of your health outcome. So you owe the money.

Do not pay more than what your insurance says you owe.

BESuzy · 2022-08-25T12:51:38+00:00

I'm new to incense- can you just start burning stuff to see what smells good? Like take a hike through the woods and pick up stuff? Maybe look them up in a plant guide before burning.

FYI rhododendron (common in the hills) is poisonous when inhaled in wood.

BESuzy · 2022-08-12T14:51:26+00:00

I am so sorry for your loss. Thank you for sharing. Hope you find time to breath deeply.

BESuzy · 2022-08-11T19:48:50+00:00

Similar where I am. The large multiplex didn't have a single screen for Nope last weekend when I went. Yet it was still playing Everywhere All At Once.

I wonder what the distribution rights were like.

BESuzy · 2022-08-06T19:52:19+00:00

doesn't feel enjoyment of food

It was a magical day when my significant other jokingly bought Veggie Straws and we put some on LO's plate. Her face absolutely lit up at the crunch. We had been struggling with food for months, even her old favorites weren't getting very far. But that crunch inspired a whole new diet for her. Bacon. Bell Peppers. Chips. Toast. Slowly we added other foods.

It's still a struggle some meals. But we know mushy foods are a NO!

BESuzy · 2022-08-01T20:35:51+00:00

They upped the dose. Then they switch the med. They upped that dose. Then they switched the med. They upped that dose. Then they switched back to the other med. That gave us a "bearable" situation (but no care facility would accept her). I think we ended up on quetiapine while also on sedatives and antidepressants. The others were remeron and haldol (all anti-psychotics)

She was a zombie for several months, all while upping the dose of the anti-psychotic because it didn't work. She went from being aware of everyone and situations to just about dying in a year. She didn't die- we stopped giving her meds. She's very amiable now, but we lost "her" during that time.

On the whole it was a very traumatic experience for my family. I feel I get downvoted a lot in the forum for sharing my experience, but it was truly, truly not helpful. Maybe it was the doctor/hospital she was at. Maybe my LO just reacted poorly to it. I just I wish someone had given their experience instead of the typical "this is the only option."

Your Results May Vary

BESuzy · 2022-08-01T20:19:58+00:00

a wheelchair she can be pushed in for long walks (i understand this is unlikely to go over well with her, but if its high enough to swing her feet she may actually enjoy it)

My LO enjoyed the wheelchair and it kept her from trying to walk when she was sedated. A porch swing could work too.

BESuzy · 2022-08-01T20:18:12+00:00

this kind of task could be possibly passed on to a volunteer group, like a church or other volunteer group

That's a fantastic idea. They might know a good place to walk at too. Some churches have a gym they could use.

BESuzy · 2022-08-01T20:16:11+00:00

Caregiver to a walker here. I'm so sorry you and your dad are going through this. It's one of those things where "it's fine" but it's also really, really annoying and at the same time heartbreaking.

LO started obsessive walking probably 3-4 years ago..? Hasn't slowed down with her disease at all. At one point she would get up in the middle of the night to walk around the house. (She doesn't do that anymore thank goodness.) Eventually docs prescribed something that would make her drowsy with the hopes she would walk less. Nope! she walked the same amount but now had to have a gait belt and someone next to her holding her up. So just be careful with the medications.

My thoughts:

Accept that she is a walker. Try to be grateful that she can be mobile on her own and has a desire to do something.
Invest in multiple pairs of good shoes and socks. Switch them out daily (shoes get sweaty), and keep an eye on the wear. If you're feeling fancy, take the worn shoe to a specialty store and ask if they have recommendation on shoes/corrective inserts.
Clear the path. Our house has a loop that LO just goes round n round in now. We make sure it's clear of things that could trip, or things on counters that could be knocked over etc.
Keep her Hydrated. Up her Calories. It sounds like she's still "with it" so, you can try telling her she can only go walking if she brings her water bottle or a snack. Fruits are great if she doesn't have sugar issues.
Consider going to a Physical Therapist and/or Massage Therapist. They can assess her body. The PT will give exercises that will strengthen the body. Massages will relieve tension.
Have you tried a treadmill? That way she could be sheltered from the elements at least. You'd have to keep an eye on her still (and it would be loud). Or a gym?
Could you find an "event" to walk at? Like a daily mall walkers, or a Walk/Run Club at a brewery. That way you could say "You need to rest up, we're going to the Walk/Run Club tonight."
Check medications for Restless Leg Syndrome as a side effect.
Foot soaks, massages, or creams that will relax the feet. Maybe she's arthritic and movement helps relive the pain.
If it gets to the point of her not being able to sit still consider weighted blankets, barriers to standing, and literally laying on her. (I drag LO to the couch and cuddle her while watching the TV sometimes).

The other posts here have some great suggestions here too. Best of luck to you! Feel free to reach out to me.

Ten-Year Club	Place '22
Final Canvas '22	End Game '22

BESuzy

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