I am an out of state daughter

Traf1978

I am not only looking for ideas to help my mom who is out of state but also to support me.  All of this is new to me but she seemed to have been having issues for perhaps a few years. After trying for a couple of years for the doctor to diagnose her he finally did. But I am not sure what "moderately significant" really means.  She's 81 and still driving, she is out walking at 4:00 am, she goes to doctors appointments 5 hours early or wrong days.  The doctors do write everything down for her and call her to remind her but still she is having problems.  I got scared over a year ago when I went to help her and she talked to me in the 3rd person and didn't seem to recognize me, she stopped paying some of her bills and so much more. We had a lawyer but she has too much in assets he deals with those in lower income brackets. She says she needs a lawyer but refuses to go.  She is either hoarding her medications or throwing them away or maybe stops taking her medications. I had a social worker helping but once she turned it over to the lawyer I didn't hear from her in several months. I am hoping to get POA and things are frustrating being so far away. A nurse is supposed to start going but they office couldn't tell me for how long, when they may start or other than making sure she takes her medication what else they may assist with. 

I am not sure what type of dementia she has,  Her father had it and I understand it can run in families.  I have been looking for ideas or information that I may be able to use.

star26

Hi Traf, Welcome to the forum. You've come to the right place for practical tips and support. Does your Mom have any relatives nearby? It's very difficult being an out of state caregiver. I tried it but had to move. Has your Mom been diagnosed by a doctor and do you have an idea what stage she is in?  Do you, or does someone else, have financial and healthcare POA for her? What are the pressing challenges you are having right now?

tiajane

I am in a similar position.  My 99 YO mother is in AL already but when I think back on it, she may have been suffering from ES for some time before.  I am the last of her children, having lost my younger brother just this past summer.  He lived in town with her so his job was the physical part of visits, delivery of things she needs and doctor appointments.  Without him now, it is all on me.  I am being somewhat pressured by a couple of relatives to move to be with her, even suggesting moving her back in her old home (which my brother was supposed to move into).  I do not believe I am emotionally capable of doing such a thing so I am wracked with guilt.  I am looking for the right questions to ask of the right agencies as well as support for me.  I have spent way too much time trying to locate a therapist during this virus crisis who will accept my insurance and be able to set an appointment that is sooner than the 3-4 months from now they may have openings.  This website was suggested to me by one of Mom's hospice caregivers and I am grateful for this opportunity to find like situated people.  I hope you do not feel that I have highjacked your request.   I am completely in this with you, only wishing you all the love and support you need.

harshedbuzz

Traf-

Welcome. I am sorry for the reasons you are here, but glad you found us.

I was an out-of-state- only child when my dad developed dementia, so a similar situation in some respects. 

Next steps for you will depend on whether your mom lives alone of has a spouse who is a capable and willing caregiver. If you don't have that in place, one of you will likely need to move or you will need to hire a geriatric care manager out-of-pocket to oversee the care she needs at least while she is in her own home. In my situation, it made sense for my parents to move back to where they raised me so that I could help support mom as caregiver. My mom had nearly died that winter prior to the move because she became very ill and dad was unable to recognize that and advocate for her. 

The most important pieces to this situation are the legal and medical aspects. If these have not been addressed, you need to get this done. First up, if she hasn't been officially diagnosed, that should be done asap. I took dad to a memory center at a major university affiliated hospital, but a neurologist who specializes in dementia could also be an option. While you are waiting for the appointment, she needs to have the legal paperwork drawn up around a POA and healthcare proxy in order that you can act on her behalf. Without this, you made need to seek guardianship which is more expensive in most cases. Look for a certified elder law attorney to do your paperwork and to explore Medicaid planning if that applies to your situation as it does most folks.

HB

Traf1978

Unfortunately there are only a couple of relatives and they are older than my mom and not in a position to help. The doctor diagnosed her, finally, this week with moderate issues. I am not getting information what specifically that means. I don't know much about the nurses that will come in to aid either.  With COVID traveling is not an option and I have numerous chronic health problems myself including asthma, diabetes, Crohn's Disease, fibromyalgia, several hernias, and more stuff. I am hoping to get someone to draw up POA for me so I can at least handle some things from here. Everything is just SLOW going. 

Challenges now are getting the POA perhaps getting her license taken away but I think that will be a big issue.  Even when I was staying with her she didn't want to take care of finances and such so here we are. I am also looking for support for myself and trying to keep information straight in my head. I am not sleeping much, not much of an appetite and horrible headaches. 

tiajane

Getting organized on my mom helped me for a while.  I was lucky enough that my parents both had wills, POAs and Advanced Directives written up years ago.  However, when I returned from attempting to deal with my brother's property after he passed this last summer, I realized how much I needed to do the same things for me.  I found a local lawyer by going through my state's Bar Association.  They have a Find A Lawyer option which lead me to a couple of lawyers who had already agreed to write up those documents for a reduced fee.  We were able to conduct all business by phone and email until signing as it requires a notary.  I had my only child join me in this effort as he needs all the information he can get to face my own future.  We also went to my bank and added him as a co-signer on my accounts so he can write checks if need be.  My mother and I did that a couple of years ago.  I have had all her mail forwarded to me so I can pay her bills and any other things needing handling, including stopping her extending magazine subscriptions to nearly 2030 and donating to every organization that sends her a calendar or address labels.  I box up her magazines and send them to her every once in a while so she has something to read as well as treats she likes.  At this point, my suggestion is to work on those relatives for supporting you in making these changes.  Enough repeat conversations from them with your mom may help direct herr into allowing these changes in her life.  Unfortunately it will also require a visit to her when you can as the bank needs you there in person to be added to her accounts.  I am wondering if any of those relatives have children of their own who can work as a team with you, as I had been able to do with my brother.  I had some comfort in knowing he was there even though he required a lot of pushing from me.  With him volunteering to do shopping, etc for her, it was a simple move to allow her car battery to die so we could stop her from driving.  She would talk about getting it checked out, but would forget to.  She eventually decided on her own to stop driving as she was concerned about accidents.  Perhaps a neighbor or church friend would be willing to check in so her meds can be monitored a little bit.  Mom did allow me to sign her up for visits from Home Instead who did light house keeping, some shopping and laundry.  They also watched her meds for me.  Now that Mom has been in AL for two years and had a stroke in December when she was hospitalized, she ended up on hospice care which is paid for through Medicare.  It is pretty new to me as I am having to deal with their team and how each of them reports on how things are to me.  I am now scrambling to understand where in the process she is so I will be reaching out to the hospital doctors for more information on their diagnosis and the hospice people for more details beyond "she is doing just fine".  I have a very different idea of what that means than they do.  And now I have to look to myself to make sure I am okay.  Coming to this site was a big move and I am glad I did.  As I said previously, a therapist appears to be near impossible to get as they are so heavily booked.    I have been trying to keep my mind busy with the projects I planned to do when I retired.  The only drawback there is some of them are family-related (genealogy research) which revives my sorrow.  So I walk when it isn't raining, try to eat sensibly, am trying to add meditation and yoga to my routine, and am starting to reach out to friends who have gone through these things themselves.  I am a little afraid to open their wounds with my questions but I just have to try.  Every day includes lots of tears and what-ifs.  I am not truly sure either of those will stop but I am trying to reduce the effects.

eaglemom

First off I'm glad that you found us. Secondly, I'm so sorry your in a position to even be looking for ALZ information. We are here to help you as best we can. Have you contacted the local ALZ Chapter where your mom lives? They might have some information available to you. Also they possibly will be offering virtual support group meetings. I think you certainly would benefit from attending. If they don't offer anything try your local ALZ Chapter.

Caregiving from a distance during a pandemic is brutal. Several things concern me about the situation, and your mom's safety comes to mind. Do you know if she's wearing a mask when she's out? Her driving needs to stop. But you know that. You need to take over her bill paying. I'm sure she won't like it, both giving up driving and bill paying are seen as giving up their freedom.

Does she have any friends whom you could call? Just to see how they think the situation with her is going? What are they noticing, etc? It is all overwhelming, that is for sure. If you look at the entire situation its overwhelming. Try to work through one issue at a time.

We are here to help or listen - whatever you need.

eagle

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Cynbar

I know this is not what you were hoping to hear, but one of you needs to move so you are close to your mother. Someone needs to captain this ship, and it is so difficult when you are far away. Frankly, it sounds like there are some major safety concerns: driving, not taking medications properly, going for walks at 4 am. Your current plan has stopped working. You don't need to bring her to live with you, a complex with assisted living as well as memory care would be a good choice. But it sounds like she can no longer coordinate her day to day life. A visiting nurse is not a substitute for a family member nearby, who is keeping an eye on things, supervising caregivers, going to MD appointments, making sure everything is working out. WE have seen posters make this work from out of state, but there have always been involved people living near the senior, such as a spouse or other relatives or very close friends (and this is a lot for a friend to be asked to handle.) Even with hired caregivers, someone needs to be on site to make sure they are doing their jobs. Maybe you could think of an excuse for her to come stay near you for "awhile" --- you need company and support, her house needs work, winters are brutal, whatever it takes. Then, the visit just extends. Or, you may have to be more forceful as you assume more responsibility for many facets of her life.

BarbaraG

Hi Traf1978

 I was an out of state daughter-in-law doing long distance care giving for my mother-in-law starting in Sept 2018 when her live in boyfriend passed away. That lasted one year of me constantly on the phone with caregivers, making dr appts, making sure everything was taken care of. Very stressful. We jumped through a lot of hoops and talked to lawyers and doctors and finally got her legally declared "mentally incapacitated" which activated the Durable Power of Attorney that she had created years ago.  In Oct 2019 my husband drove 1,000 miles to her house and told her he was taking her to the doctor. He took her to an assisted living facility that day. WORST DAY EVER.  She cried. He bawled.  I bawled.  He came home and we spent this past year feeling guilty that she was 1,000 miles away with no family around. So... during covid I drove 1,000 miles both ways to clean out her house and sold it in June.  Then in Oct 2020, I drove 1,000 miles both ways and got her out of the facility and drove her to our state and put her in another facility.  It's not working out so this week I am taking her out of there and we (she and I) will stay in a suite at the Holiday Inn Express for $3300/mo vs the $7800/mo at the assisted living facility. She will get my undivided attention and proper care which she was not getting at the facility. Everyone blames everything on covid but I'm thinking that for $7800/mo they should have enough qualified and caring staff to take proper care of my mother-in-law. They are not doing the basics and she's had 2 UTI's in 8 weeks.  Unacceptable.  So my advice to you is get your ducks in a row and either move near your mother or move her near you.  You can start with the State Dept of Adult and Elderly Services. They can go do a wellness visit and determine if she should be driving, etc. You have to start the ball rolling and get things done before something bad happens.  None of this is easy but it is necessary.  Good luck.

 Barbara

Traf1978

Things just seem to keep getting more and more complicated.  Her Social Worker from protective services rarely calls me and I can't reach her.  I have tried to contact her supervisor to discuss this situation. But that is almost impossible too. This lady, or social worker doesn't keep me in the loop at all, she may call me once a month or longer. I send her emails often but she doesn't reply. FRUSTRATING!!

Mom gets upset when the subject of a POA comes up so now I am forced to do a conservatorship, a forced one.  But still need the doctor's input and form which he can't do, so he says, unless DSS informs him so.  I don't get this doctor at all.  He was the one that said mom has moderate dementia and that she is not capable of taking her medications correctly or handling her finances. He doesn't think she needs medication either. I know medication doesn't cure anything but it would be good to help her anxiety. It seems the doctor is okay with mom living alone in a 2 story apartment and just having someone to check on her daily is enough. It isn't enough at all. Mom goes for walks daily for 5 or 6 miles. I am very concerned that one of these walks will be the one she doesn't remember how to get home. But the area is familiar and where she has always lived so is that a good thing? With dementia I am not sure that is 100% true.  She has been seen walking at 3 a.m. in the snow.  She has fallen twice this week but wasn't hurt... this time. She thinks she is infallible (that may not be the right term).  Can I take over paying mom's bills because I am her daughter and there is no one else?  Or do I need the court to decide that? Does a elder lawyer do that?

Traf1978

I know I am not the only one dealing with my own illnesses plus the anxiety of helping my mom to be in a "safe place". I am having chest pains, stomach pains, headaches, trouble sleeping and eating. I try to take a day off from making phone calls and chasing down people for help. What are others doing to deal with this type of situation. Any suggestions would be appreciated!!

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