all new to me(2)

Tamson

My dad passed away in Sept fairly suddenly after a sudden cancer dx. That left me to fend for his wife with mild dementia. No will, no info and Ive spent months now just trying to figure out his finances and trying to pay the bills. She lives in PA and I am in NH. I am the only family she has which is taking a toll on me. She  refuses to move up here with me so I am in the process of starting a home care service for her which she agreed to. Her drs never return my calls even though I faxed them the POA. I am not even sure she has a proper dx accept dementia. She is only 75, but her mother and sister died of alzheimers. She is barely eating and getting worse by the month and I do not know what to do about it. I have tried everything but she is convinced she cannot eat because food tastes bad and insists its her sinuses but I see no signs of sinus drainage at all. She has an apt with ENT in May but she has had a declining appitite over the past year when my dad was taking care of her.  She has flonase and claritin but its also hard to get her to take the meds. Right now eating has been the biggest concern of mine as she is loosing so much weight. She had a dr apt a few weeks ago with bloodwork but the drs office has not returned my calls with results or to address my concerns about her weight. She will drink 1-2 ensures a day a maybe a few bites of whatever the neighbor can get her to eat. I just feel lost in this situation. The neighbor has been taking her to apts as she no longer can drive. I do not trust this neighbor as she has taken things from the house although my step mother is unclear if she told her she can take these items. But this neighbor is the only help I have with her right now. I am just drained

SusanB-dil

Hi Tamson - welcome to 'here'... sorry for the reason, but glad you found our little corner of the world.

Make sure your POA includes HIPAA access, or make sure you also have HPOA (Healthcare Power Of Attorney). They are not the same thing. A POA can include the HIPAA clause, but make sure yours does. It could be why the doctor is not getting back to you.  Is she able to call the doctor and have them put you on her HIPAA access?

Sorry for the loss of your dad.  I know you are trying to handle a difficult situation. She is blessed to have you to care.

harshedbuzz

This is a very difficult situation complicated by distance.

The POA is likely being ignored by the doctors who use HIPAA waivers to determine who to share with. This is especially critical given that she is a distance and they have not seen you regularly face-to-face in the role of caregiver.

You need to get DSM to sign HIPAA waivers for all her docs and also to create an account on the patient portal with them and any labs or hospitals she uses. Once the HIPAA form is signed, perhaps you can schedule a virtual appointment and explain the situation. IME, sometimes a long-term family physician is reluctant to make a dementia diagnosis in a situation where the spouse/family is already doing what they can.

If she hasn't been diagnosed, you need to make that happen and it may take some time and travel to finesse that. I would be super wary of the neighbor- so many PWD are taken advantage of and if your DSM is taken advantage of, that's money that won't be there for her care. You have an obligation as POA to protect her. 

HB

MN Chickadee

Righting this ship is going to be time intensive and not possible from a distance. Likely will involve you taking time off work or your regular life to go to PA for a few weeks and deal with things. Sounds like a new doctor or personally going to the doctor with her is the first order of business. You need one who will communicate with you and follow up on things like the weight loss. It sounds like she has some delusions around food and it could be some psycho-active medications are in order to alleviate those and get her to eat. A neighbor who may or may not be trustworthy is not going to be enough. A PWD needs someone on the ground making decisions, overseeing caregivers and medical care, laying eyes on them regularly to make sure their health and finances are in good shape. Home care can be very messy to organize. What happens if they don't show? Or mistreat her or steal? It may turn into a nightmare to handle from a distance. Many of our loved ones think they are fine, see no reason for help, refuse to move. They often have anosognosia, where the brain becomes so compromised it can't see its own deficits and decline. In their reality they are fine and we can't convince them otherwise. We have to use therapeutic fibs and work behind the scenes to get things done and make sure they are safe. Most of us have to facilitate a move this way. We bring the person to our home or a memory care facility using fibs. The doctor wants you to stay here in this "rehab" for a few days. Or you're coming to see visit me and it keeps getting extended. Maybe there's a problem back at the house like a burst pipe or weather so we can't go back just yet. Rinse and repeat until they forget. In order to care for her you will have to move her to your state unless you hire a geriatric care manager close to her which can get expensive. There just isn't any way to do it from a long distance. It doesn't mean she has to agree, you just have to find the right fiblets and strategy. I would consult an elder law attorney if you haven't yet to make sure your POA documents are air tight for this process and they can also help with financial planning for long term care. You might also want to call the Alz Association hotline and ask to speak with a care consultant. 1-800-272-3900. They have social workers who specialize in helping people work through these challenges and find resources. Good luck and let us know how things go.

Iris L.

Welcome Tamson.  When you do get to the home, secure her jewelry and anything else important, such as documents.  PWDs misplace things and other people "borrow" things.  

Iris L