When Does Long-Distance Caregiving Stop Working?

ALCB

Hello. I already posted this in a group discussion, but figured this section gets more traffic. I was wondering—when does long distance caregiving stop working? I understand that at some point my grandmother won't be able to navigate technology/understand how things like FaceTime work, but I don't really know when that happens. If it's helpful, my grandmother is 82, lives with her husband, still physically able, kids are ~30min away, and about stage 4 but starting to show stage 5 symptoms (long-term memory loss, confusion over family members). She is undiagnosed (😤), so no medication for the Alzheimer's.

SDianeL

welcome. Everyone with dementia progresses differently depending on many factors and what part of the brain is affected by the disease. By stage 5 going into stage 6, my husband stopped being able to use the phone and work the tv remote. If you’re asking it’s probably time. Any changes should be done sooner than later. There is no medication for Alzheimer’s. Sometimes they prescribe Memantine which is supposed to help thinking but there really is no way to tell if it helps. I didn’t see a difference in my husband. You should get a referral to a Geriatric Psychiatrist who is better at prescribing anti psychotic meds if she should need them for anxiety, agitation, hallucinations and delusions. You might want to read the book “the 36 Hour Day” which really helped me after my husband’s diagnosis.

harshedbuzz

I'm a little confused by your post.

You've mentioned before that she's not diagnosed— is she seen regularly by a PCP who may have ruled out other possibly treatable caused for her cognitive changes? Sometimes families, in the face of symptoms in an older family member stay with their PCP at this point. Oral medications for Alzheimer's only help function in some but they don't slow disease progression. Infused medications can help those with confirmed Alzheimer's in early stages by delaying the next stage by about 8 months on average. Younger people and men see, to benefit most from these meds.

If she lives with her DH, is he not her primary caregiver? You've mentioned adult children ~30 minutes away— are they not involved? Are you involved beyond Facetiming?

IME with dad, use of technology tanked in the middle stages. I'd say stage 4 for his laptop, stage 5 for his smart phone's calling features (he got a smart phone in early stages and was never fully competent on it). In stage 5 approaching 6, he used the TV remote, ceiling fan remote and phone interchangeably and started disconnecting wires and cables telling me "Everything was wireless now". Dad never responded to Facetime or even his digital picture frame so I can't speak to when that was lost. My friend's mom didn't respond to her grandsons on Zoom or Facetime by about stage 5 even though my friend was with mom and trying actively to engage her— mom would get up and wander off.

HB

H1235

I think the most important question is, is she safe. If there was a fire could her husband get her out of the house?, is she eating properly and taking medication as prescribed?, is there someone monitoring her to make sure she is not doing things she shouldn’t (wandering, using the stove, driving…)? Is she keeping clean and showering?, are her finances safe?. Imo if there is even a hint that these things may be an issue, then I think it’s time to reconsider her care situation. It’s best to act before there is a problem, rather than reacting to one.

Quilting brings calm

If she is moving into stage 5, she’s at the point where she shouldn’t be left alone. That’s more or less handled by her husband ( with break times) as long as he’s capable of supervising her. He’s likely ‘scaffolding’ her now. That means visitors don’t realize how far along she is because he’s doing a lot for her. Possibly anticipating her needs, finishing her sentences, handling chores she can’t etc.

At this stage, once he can no longer be her caregiver, long distance caregiving is not enough. You don’t want her turning the stove or water on and walking away. You don’t want her wandering out the door. Stage 5 people often do not dress properly for the weather conditions. You don’t want her driving.

One more thought: caregivers neglect their own health, and 1/3 die before the person being cared for. Pay attention to her husbands needs too,