I live in Seattle. My mother and the rest of my family live in the midwest. Travel is difficult and very expensive for me, as there are no airline hubs close to where I fly into when I visit. I am lucky that my dear sister has stepped in and taken care of helping get my mother to a from appointments when medical issues have popped up, but she is a little battle weary . . .

My sis is more qualified than me or my brother in the fact that she is in management of hospice services and has a background of working in management of care facilities. The one battle she feels she is not winning with my mother is Mom's personal physician, whom she dearly loves, but who is coddling my mother, refuses to re-evaluate her medications (like to remove some she doesn't need, and prescribe something that would possibly help with her memory issues). My mother is so fixated on her meds, but will not consider trying something new that might actually improve her life.

My mother has been in a live-in situation with her male partner for almost a decade now, but recently he has confided in both my brother and sister that Mom's combativeness at times is more than he will endure. If she exhibits much more of this behavior, he says he will leave, and go live with his son and family. This would devastate my mother, who truly believes she is ina loving relationship that will only end when one of them passes on. . .




Bottom line: My question is -- what can a long-distance sibling do to help? I feel helpless, and with heath issues of my own, often powerless, to do much if anything to help. My sis seems to be the realistic one, keeping an eye on Mom's progression (she says this stage is the hardest, because my mom knows something is wrong with her memory and her functioning) and that when/if she moves on to the next, she will likely be oblivious, living in the dream-like, regressive world of Alzheimer's. My brother, the eldest, on the other hand , pretty severely time-limits visits, takes her the same place every time, and never sees (nor wants to see!) the tougher side of Mom's condition. I hadn't been home in several years, and this Spring I was shocked to see not only her progression, but the way my brother has put a protective wall around his society life-style and his ever-so-planned-out-life, which doesn't appear to include getting his hands dirty nor getting his spirit challenged, buy the deterioration of our own mother. He is not there to help with the issues of her medications and her care, but rather keeps the visits superficial. My sister, on the other hand, takes up the slack.

Where can I turn for information on how I might be able to be of more assistance? And how can a long-distance child be there for her mom, when being there in person is not possible as often as I would like?

I guess just by being there by phone and email to support your sister emotionally and so she has someone to talk things over with.
Knowing someone is on her side and appreciative of her doing so much even if you not there in person would be a big emotional boost I think.

Can your sis take her to a second Dr for evaluation, without the main dr knowing??? Or does ins require a referral?
She might be able to contact ins co herself and explain the situation so they will approve without dr.

Just sending hugs. I know what your going through as I myself am facing the same thing. My mom doesn't have dementia or alzheimers dx but had brain surgery. She didn't even know what year it was today.

Hi,

I am the sole care provider for my husband Lynn who also suffers with Alzheimer's. My heart goes out to your family. My husband has kids from a previous marriage. I have been with Lynn for 23 years, so we are all very close. Some are not able to be here as well. The best thing they have been able to do for me and Lynn is to keep in contact. I know that seems so simple....but it IS major.

I have a sister out of state and I know when things happen here at home, she gets so frustrated about being so far away and not being able to help. I imagine this is very hard for you. I think it is commendable that you are trying to help even if you can't be there in person.

As far as your mom’s medical care, as her child you do have a say in it. You can talk with your sister….maybe you could call her doctor and express your concerns. Your mom should also being seeing a neurologist…..perhaps that would be a way to get her different care. Ask her doctor for a referral, explain you are only looking out for your mom’s best interest and want her given every opportunity for care that is available to her. If he is unwilling, pay out of pocket and have her seen.

My husband goes to the VA and though I am grateful for them…I felt he was diagnosed and that was it.
I paid out of pocket for him to see my neurologist, who ran scan etc to rule out other things, and work on a medication regime. Through him, I was lead to places that could help in my support, so I could better care for Lynn.

For your sister, the best thing one can do for her is to offer her respite. It is OVERWHELMING at times being the only care giver. Offer to visit so she can take a break. Maybe contact elder care, health and humane services in her area to see what help they offer for your mom and your family.

I am not sure how close you are to your mom's boyfriend, or of his own health issues.....but I can tell you watching one you love deeply change into a virtual stranger is indeed very difficult. There is help with the mood swings, the anger, even violence.

I am not sure where your mother is in these stages, but they are all "normal" with AD. It sounds like he is overwhelmed. My husband said and did violent things that he NEVER would have done before AD, it changes them in so many ways

He also has sundowner's, I am not sure if your mom has that as well?
Your mom's boyfriend could use some help as well, in dealing with these changes. There is help for him in support, and understanding none of these changes are your mother's fault. It takes a great deal of love and understanding, I hope he is up to the task for your mom's sake.

Below are some sites that have helped me. They also have areas of help on helping your parents when you are out of state....

http://www.alz.org/index.asp
http://www.alzheimersupport.com/
http://www.webmd.com/alzheimers/guid...port-resources

Please also visit here, for a moving video...Alzheimer's prayer.....
http://www.inspiringthots.net/movie/...mer-prayer.php

Wishing you the best, Nikki

The difficult thing is Mom is still in her condo, requiring no care so far. She drives herself to lunch each day . . . but eats the same items off the menu in the same restaurants she rotates through every day. . . .and she loves the attention and the fact the wait staffs know exactly what she will be getting. She likes being called by her fist name as she walks in (I now know that certain establishments must train their staff in dementia and Alz., because I saw with my own eyes how good they are with the elderly like my mom -- not quite out of it, but in that "phase," if you know what I mean.)

I am not sure if she has seen a neurologist for her dementia, but I do know she had a difficult lumbar fusion a couple of years ago, and several neuros objected to the questions my sister (who was acting as her advocate and making sure Mom and the doctors were understanding one another) was asking pre-surgery. From my recollection, I would have been asking the same or even more pointed questions about the procedures, second opinions, etc. . . . but would you believe one neuro documented that my sister caused the delay in my mom's surgery, and is therefore responsible for my mom's frustration and belief that the delay caused all her problems. My mother actually believes the pain from the lumbar issues/pre-and-post-surgical pain are what caused her memory, word-finding, confusion, and other issues!

I will ask my sis once again if Mom has been to a neuro for her dementia issues. If she is unable, then I will ask my brother is he could take some time to do this. And I will see about following up to push her PC to support this move.

And her boyfriend (odd word when he is 83!) has recovered nicely from his series of strokes. They seem to be doing well.

I agree, I would be asking 20 questions too! Any doctor worth his salt expects questions from family, I am sorry your family had to deal with that one. That leads me to another point....

It sounds like your mom is in the beginning stages, she can still drive and has cognitive thinking. Sadly with AD the day will come ...and all too soon...when she wont be able to. NOW is the time to act on POA for health and finance. (among other paper work one may need to get in order)

I am glad you are looking into your mom seeing a neurologist. She truly should have some tests to rule out other things, and they can help her with the best medicines for her. It is so hard, wishing you all peace on this journey