Have to drive our mom 7 hours

kellyskud

My brother and I are all new to this. My father kept if from everyone. My mom is entering what we think is late stage and we have to get her to a care facility 7 hours away. My father just passed away and she was not well cared for at home with him. We found an amazing memory care facility, but it's a 7 hour drive. Any advice?!! We took a practice run today to get ice cream close to home and she started getting agitated 25 minutes in. Is there a prescription drug we should ask a doctor to prescribe for the drive. Should we break it up with a nap at a hotel? OMG this is terrifying. Any advice and encouragement would be appreciated. We are alone in this and trying out best.

Quilting brings calm

When I first found out my mom had this disease, my parents lived 12.5 hours away from us. She appeared to be in the late stages. We did an emergency move to get them to our area.
There was a lot of non-help from their doctors at the time. A lot of drama from my step-dad. To make it short, she did see a neurologist the week before we left. He told us the only way to get her home was to put her on Seroquel and Depacote. And he was right.

It was awful. My step-father decided he wasn’t coming ( he came two days later). We left at noon after the movers packed up. We stopped halfway for the night. She was anxious and upset the entire drive. She was sure we were going in circles, that we were lost. Bathroom breaks at gas stations were a tag team. I would go in the stall with her while my spouse got gas. He would wait in the store with her while I took my turn.

In the hotel- we put her in the bed away from the door. We put the chair against the door to keep her from wandering during the night. Neither my spouse nor I got much sleep because she didn’t. She hadn’t the entire two weeks we were at their place, so we hadn’t either.

This is extremely important: Turn the child locks on. She opened the truck door at highway speed because she wanted to take the dog for a walk. My spouse got the truck stopped before she could get out.

We took Mom to our local hospital before we even went to our house. Turned out she had a UTI that moved into urosepsis ( I mentioned the non Help from doctors in her area? They had told us repeatedly she did not have a UTI). She spent a week in the hospital and a month in rehab. Then they moved into assisted living.

I’m just going to ask- why is the care facility 7 hours away? Is it close to someone in the family? Because someone in the family. will need to check on her weekly. There will be things she needs, stuff that comes up, etc.

harshedbuzz

When my aunt moved her sister interstate, she hired medical transport. It was expensive but helpful. My aunt rode alone in the van.

HB

Emily 123

Hi kellyscud,

I'm so sorry for the loss of your dad. I'm sure he was trying to do his best for your mom but the care demands are a lot for one person to handle

Tam-Cummings-LLC-Handouts-2.pdf

understanding-the-dementia-experience.pdf

In terms of your mom: I would read the attached first. There are a lot of types of dementia, with Alzheimer's being the most common. If your mom has Alzheimer's then the Tam Cummings staging checklist will apply-you'll see at least some of the behaviors in each stage, though not all, and they should follow that progression. If there's another underlying disease process at play, like a UTI or vascular dementia, then the behaviors might not go in order. With mid to later stages change may upset her—it was good to do a pre-emptive test run. Her comfort zone will be whatever's familiar. With the loss of your dad she's likely already on edge-she may not recall he's passed away, and you don't have to remind her that he has because it's upsetting for you both—it's often easier to tell the person something soothing about why they aren't available right away and then divert their attention. In the long run, it becomes about keeping the person with dementia calm rather than anxious.

Have you discussed the plan with her healthcare provider? I'm assuming you'll need to get her seen to get a TB test, updated history and physical (H&P) and vaccinations, etc., prior to intake at the MC. Since you have concerns about her previous care it wouldn't hurt to have an underlying UTI ruled out, just in case, as it can exacerbate dementia. You should definitely discuss the need for anti-anxiety medication. I'd make sure that everyone transporting her has at least an electronic copy of the H&P, medication list, and any other legal documents like the POA—if she becomes agitated mid-trip and outside assistance (EMS, police) are needed they will be invaluable.

If your mom is late-stage: She'll have no short term memory to be able to recall any recent conversations, and new environments will be strange to her because she can't retain memories of what she sees or hears anymore. It's Groundhog Day 24/7 for her.

If the disease has begun to erase her older memories, does she still recognize family at the age you are now? It's going to go a lot more smoothly if she knows you, & you can come up with a reason for a car trip that she'll buy into. It has to make sense to her within the reference of what the dementia is causing her to think. If she can't remember being a wife and mother, but still thinks her parents are alive, perhaps she's on a trip to go see them or go on vacation. Maybe your family did/does a specific vacation every year and you're going to that, or meeting for the holidays. You may want to call the MC a hotel or a short term physical rehab where the doctor wants her to be to get stronger.

I wouldn't break things up for a nap, but that's me. The PWD can start to become less directable and more foggy as the day winds down-this is called sundowning. It may mean that you get an early-ish start in the morning so that you get to the MC mid-afternoon, but ask the MC what day/time will be best, because they may have times when they have more staff for new intakes. I drove my mom from SC to VA, (about 8.5 hours) but my mom was willing to go with me for a 'short visit' while her SO was in physical rehab—she was late stage 4 early 5 at that time, still semi-continent of urine and continent of bowel, so she had on her incontinence briefs and we did pit stops—she was oriented enough that she knew me and knew we were traveling, and so I didn't feel like I had to be physically glued onto her as long as I had her egress from the bathroom in eyesight—not so much that she'd try to purposefully wander as much as she'd forget to look for me. I just had to constantly get in her line of sight, and repeat that she was coming to visit the entire trip. Playing music she liked seemed to help.

If your mom's incontinent, consider what level—urine and/or fecal? Can she stand and balance in a bathroom stall with a grab rail on her own? If she's unsteady is she a fall risk with just one person to help her?

If she needs assistance then use the handicapped stall, and have a stash of 13 gallon trash bags for bathroom changes . Have gloves, wipes, extra max absorpency incontinence briefs (step-ins or tape sided—I'd defer to the rest of the posters on this one), a couple of changes of loose, easily changed clothing, & also might need some clean socks/extra shoes. I'd also pick up some disposable underpads (''pee pads") from the drug store to use on both the car seat (cover the pad with an old towel & have a few extra towels in the car) and you can put a couple of pads down on the bathroom floor for her to stand on when you change her-just drop everything disposable onto it, wrap it up, & pop into the trash bag & you're good to go. Any soiled clothes can go in another trash bag for transport. Have some extra paper towels and all purpose cleaner in the car can't ever hurt, either. Have a stash of her meds & basic travel meds handy, like tums, acetaminophen. If you're just going in a single car and don't have something like AAA that will handle a roadside service call you might want to make a plan—likely you won't have a any issues, but plan for the worst, hope for the best, right?

v3

Yes , I second QBC's question - why 7 hours away? What made that a stand out MC? Some of the larger chains market towards the families with fancy lobbies and grand pianos when care is more staffing , attitude and dementia training. Are any other homes closer to you?

Since you have your father's estate to settle , if their attorney is an elder law specialist [ versus general practice] having a discussion of how to manage your Mother's assets for her care would be something to consider. Will she need medicaid [long term care type- not low income ] at some point? Do either of you hold her DPOA, healthcare proxy etc.

I'm sorry about the loss of your father.

The Alz Assoc is a great resource - on all topics — including support for the families;

"Get Help and Support, Day or Night

The Alzheimer’s Association is here all day, every day for people facing Alzheimer’s and other dementia through our free 24/7 Helpline (800.272.3900). Talk to a dementia expert now and get confidential emotional support, local resources, crisis assistance and information in over 200 languages. It's ok if you don't know where to start. Just give us a call and we'll guide you from there."

You aren't alone.

psg712

Lots of good suggestions here for the travel. My biggest concern on reading your post is whether or not your mom has involved family close to the facility where she will be living. Seven hours is a long trip to make in an emergency situation, when she may be alone and unable to give accurate information at a hospital. Even for routine matters, she will need someone who can monitor her care at the MC and bring in things that she needs. I would definitely recommend proximity over amenities in a memory care. Her needs will grow greater over time, and she will need a local advocate.