Non-CPAP Forum Posting

Posted by Been There Done That on May 27, 2001 at 14:10:41:

In Reply to: Trach for patient with Dementia? posted by GBoogie on May 26, 2001 at 21:00:50:

I'm a cpapper with no trach experience, but I'm very well versed in caring for an ill elderly parent. Sure does make you mad when you try and try and try and your parent just doesn't improve the way you think he/she should. OSA is certainly "much easier to take" for a caregiver to take than a diagnosis of Alzheimer's--you just do all the mechanical things right and the patient improves--and your much-loved parent returns to his/her old self. Oh, if that only were true!

Bodies are very complex sytems, with many variables involved when trying to improve general health. The nuances of relationships between parent and child are very subtle. Your mother might have a trach--and she still might not be able to follow instructions or set up a routine to care for the trach, and she might (despite all her assurances to you to the contrary) simply not want to sleep with CPAP.

Before finding a doctor who will see a trach as the solution to your mother's problems, why don't you try getting her some home health care? That was a lifesaver for me (a long-distance caregiver), and a huge improvement in my dad's general health and outlook. My dad needed many, many drugs, and keeping his prescriptions filled was a nightmare for him (his insurance required mail-order services for all prescriptions longer than 2 weeks duration). His doctor prescribed home health care. A nurse came out and did an assessment of Dad's home, his ability to care for himself and take his meds. Regular visits were set up, I set up a pre-paid prescription plan through his insurance. The relief for my dad was almost magical--he could sleep better because he wasn't so darned worried about his meds. His heart was in pretty bad condition, so he moved into senior housing, which happened to be a senior nutrition site (group dining on meals-on-wheels grub). The socialization did wonders to improve his outlook. He was independent, but not alone. Caregiving was lots easier under that set-up as well. While this wasn't an ideal living situation for him, it was definitely safer for him than being alone in his home.

I'd also suggest some respite care for you, if you are your mom's only caregiver. You need a break to get some perspective on the situation while you have the comfort of knowing somebody else is looking out for her for a little while. There is no shame in this. We are not superhumans and can't expect to be in control of everything all the time.

I'm not a shrink, but I can see the anger and frustration in your post (Argh!). Your mom just isn't doing what you want her to do. Well, maybe she can't, no matter how hard she tries or wants to. Does that mean she doesn't have OSA? No. Does that mean she shouldn't have a trach? I'm not a doctor, I can't answer these things. But I know the frustration of trying to keep a parent well, safe and happy--and a semblance of his/her old self. And the truth is, no matter how hard you try, you simply can't control all the variables. I tried to get my dad to eat veggies, disguised them 8 zillion ways; I ended up making him familiar food (like spaghetti) that didn't taste much like spaghetti because it contained pureed veggies other than tomatoes. So he wouldn't eat the spaghetti I made him, even though he loved spaghetti. So what was gained? I felt "better" knowing I'd done my job in taking care of him--and he stopped eating his favorite food. Wow, wasn't that progress? All I can say is use some common sense. Love your parent no matter what the situation, accept that you can't keep him/her with you forever, and understand that you cannot predict how or when every life will end.

I was my dad's primary caregiver for 7 years. He died in March on his birthday.

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