Coping

support123

I'm a caregiver for my Mom long distance. I don't have any support and I'm not sure how to cope anymore. She is declining and I feel she needs different meds because she is starting to show side effects. Not sure how to straighten this out. I've asked for help from docs but nothing changes or they are very vague on the subject. Or maybe I'm not accepting what's going on.

I'm not good at care giving and I don't know where to turn for help. I don't think I can do this anymore.

Suggestions?

Damiross

It is hard. There have been times when I just wish my wife was placed into a home.

My wife was put on hospice. As I found out, hospice isn't only for terminal people. She has a nurse that comes by to check her vitals, medicines, and well-being. It is paid for by Medicare/Medicaid.

H1235

Welcome. Is your mom in a facility? Are you her durable power of attorney? If she is living in her home alone and you are long distance that is probably not going to work. Caring for someone long distance is going to add a whole new layer of difficulty to all of this ugliness. It might work out better to move her closer to you. Most people with dementia don’t recognize their symptoms or limitations. Trying to reason with her and convince her to move to a facility near you is not going to work. You are going to just do what needs to be done to make sure she is safe (assuming you have DPOA). Is there another family member that might step in? Does she have some kind of patient portal you can set up and use to communicate with the doctor? I have found this to be very helpful.

SDianeL

to speak with doctors you need a Medical POA or your Mom would have had to sign HIPPA forms in each doctors office to grant you that permission. If you have either of those the doctors should speak with you. Are the side effects she’s having listed on the RX info sheet? Who is telling you she’s having side effects? Long distance caregiving is extremely difficult. Can you move her closer to you?

harshedbuzz

@support123

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

Long distance caregiving is a special challenge. You need regular eye-on to be able to assess the disease progression and evolving care needs in real time. You cannot rely on a PWD to be an accurate reporter. IMO, the three options in this scenario are you moving to her location, her moving near you or hiring a professional geriatric care manager to be your eyes and ears.

When faced with this very choice, I moved my parents back to where I live. I'd already made a drop-everything-and run flight to them for a medical crisis and did not want to repeat the exercise. As the disease progresses, there will be falls and perhaps infections that land your LO in the ED. As POA and medical advocate, you'll want to meet the ambulance as it arrives. BTW, SNFs and MCFs do not have the staff to send their residents to the hospital with a caregiver, so this is really important.

My dad was resistant to moving, so I framed it as staying local to me while he saw some of the top doctors in the country for his various medical issues.

HB

HollyBerry

Sending you virtual hugs. My mother moved to an IL/AL (independent living/Assisted living) residence near my brother, by her own choice, then he ended up moving when his wife got an amazing job offer and the first point of contact suddenly became me. I flew in for 5-day weekends every month for almost 2 years until she could get into a place near me. There was no way we could have continued to care for her from a distance. It was hard enough once she was 20 minutes from my house.

Re the dementia angle in all of this: my mom had a stroke and the concept/diagnosis of vascular dementia wasn't brought up with my brother and I until she moved here and saw different providers. I wish we had known sooner and had understood how it affected her differently than "just" a stroke. I bring this up because I feel like the providers can't do their best work with a patient who can't communicate for themselves unless there is an actively involved family member or other person to fill in the information.

I don't mean to make you feel guilty for trying to do this from a distance so far. I bring it up only because if I had known then what I know now, I would have moved her here about 3 years sooner. I hope you find a solution that works for you.