New to Forum, New to All This

HeatherRae

Hi there, 

I just joined this forum so saying Hello. This morning, my mom had an appointment with her primary care doc. She put me on speaker phone (I live in CA; mom is in OH) and, long story short, doc suggested I start planning; as in, looking at assisted living facilities in my mom's area. 

She has a neurologist appointment in 9 days.

Her short-term memory issues, her having a hard time following conversations (long sentences not good) and unusual sleep patterns are things I've noticed over the past year, but they have gotten more pronounced. So this isn't a complete surprise, but hearing it from her doctor made it more real.

I have so much to say, so much worry, and guilt because I live so far away. And this is just the beginning! I'm an only child. How in the world do ya'll juggle caregiving from afar, working full time, life, without going batty?

h

Quilting brings calm

First. Breathe.  This is a marathon, not a sprint. 

There are family members here trying to do this long distance.  There are others that moved or moved their dementia patient.  There’s no one way and we are here to help. In my case, we moved my parents back to my area and they are in assisted living here. 

Second, get your mom to assign you medical power of attorney and durable financial and legal power of attorney.  You will need to have that last one signed by both of you in front of a notary.  Ohio probably has an easier process for that.  Get your name added to her checking account etc.  you can then pay her bills online 

Third- buy the book the 36 hour day use it as a reference

SusanB-dil

HeatherRae - welcome to 'here'.  Glad I found this forum, and I'm sure you will be, as well.

totally agree with Quilting BC.  Get POA in place ASAP, and the 36-Hour Day book.  Also check out other messages on the forum and the 'solutions' tab at the top here.

My first inclination is to move her close to you in CA if you are her primary person, (unless you move to OH). If you are to move her to AssistL, thinking you might as well get her closer, since it seems you need to move her anyway.

Lindsay22

Hi Heather, 

Welcome to the club no one wants to join.  Second the importance of getting mom's POA and living will in order now while she is still able to consent and sign. It becomes significantly more difficult as her capacity declines.  I'm an only child too and lived in FL while mom was in PA for the past 11 years.  We moved back to PA in the spring to care for her (she is in MC now).  It is very difficult long distance but I managed the early stages from afar with in-home care givers.  You may want to look into that now too as there are often waitlists because of short staffing.  Having someone come in even a few days a week is very helpful in the early stages because they will see things you don't being far away and be able to give you an accurate picture of what is going on.  When my mom was diagnosed they told me she would need 24/7 care within a year and they were spot on.  That was September 20 and we moved her to MC in September 21.  Of course everyone progresses differently but the time is now to make decisions if she will move to CA and enter assisted living there. What is her financial situation, can she pay for AL or MC? If so, start looking at places, it took us about 8 months to find a spot off of the waitlist.  If not time to look into the process of applying for Medicaid. 

It's a lot to manage but this place is a great resource and support. 

DrinaJGB

Welcome, Heather-to the unfortunate club that nobody wants to be a member of.

 Yes, certainly hearing it straight from the doctor makes it real. That is one of those moments when you become aware that life has changed and a new journey must begin. Not only her life, but yours as well.

And actually--sometimes you do go a little batty, but that's ok, too. We all understand.

There will be hard decisions to make, and a roller coaster ride at times. It is a sobering realization how one's life can change in an instant, but there is lots of support here for you.

Margueritejudy

I would look for assisted living near where you live and move your mother there ASAP. That way you can visit easily and monitor her care and her progression in case she eventually needs memory care. There are some moving companies that cater to moving seniors if she wants to have some of her furniture, etc. Yes, this will be a major project, but it will be easier in the long run that trying to find AL in her area and not being able to make sure she’s getting good care, etc. If she resists, remember: Love is doing what they need, not what they want. Repeat this many times a day and it will help.

Margueritejudy

Back again. I’m the one with the sister with dementia who lives in the same independent living retirement community as me, but in a separate apartment. She does okay since I can send her reminders by text and visit her almost daily. We know she has dementia from her symptoms and the geriatrician agrees. She is scheduled for a CT scan of her brain next week. What will this scan be able to tell us? Can it tell the type of dementia? 

She has no short-term memory from day to day and her executive processing is bad so I handle all her financial matters and paperwork, doctor’s appointments, etc. Is it important that we do further testing at this point or can we wait until further symptoms develop to find out what kind of dementia she has.

HeatherRae

Thank you all, 

I'll report back after I know more.

It's all definitely overwhelming to think about. Re: moving, moving my mom to CA is not good b/c the rest of our family is within minutes of her right now. So better for her to have lots of people nearby -- uncle, cousins, cousin's daughter -- than just me, who works full time and then some. Me moving from CA to OH is not ideal because I have a large and reasonably new mortgage and a life here. 

Fortunately, we (my mom and I) don't have to make any hard decisions right now today asap, but we do need to get the ducks in a row, which gives me way too much to think/worry about. Also I'm grateful she got the POAs drafted about 5 years ago.

Thank you all,

harshedbuzz

This is tough stuff.

I too am an only child. Faced with a similar situation, I moved my parents back to the area in which they raised me for a whole lot of reasons.

As the disease progresses, there will be emergencies where you will be called to travel to her. Needless to say, it's a whole lot easier to drive 20 minutes than book a flight, pack and (in my case) be the only person on the plane to MCO not heading to "the happiest place on earth". 

If the plan is to leave her in place for now and move her when she's progressed further, than you risk an event like a broken hip that makes that plan unworkable. 

It is possible to hire a geriatric care manager to be your professional eyes and ears in OH, but this is an additional expense in addition to flights to manage her care and verify that it meets her needs.

It's great that she has family, but can you rely on them. Will they visit regularly? Part of moving dad was to be near family. While dad's beloved brother was happy dad was back in town and younger, retired, and fitter than dad, the reality is my uncle did a 45 minute drive-by visit every 4-6 weeks. If I were inconveniencing myself to maintain that connection, I would have been disappointed. Seeing dad was difficult for my uncle. My niece was very helpful in making the moves (my parents had homes in MD and FL that had to be staged, sold and emptied), she rarely visited once they were settled as she is very busy with a high- pressure job. FTR, after her mom died, she lived with my parents so was closer to them than the average grandchild. Even now, she sometimes goes a month or two between visits even though I know she wishes she could come more often.

I would move her out under the guise of a visit and keep her here. You can have a few of her things shipped later. A good realtor will help you arrange to sale and will know who locally can manage the other pieces.

HB

Cynbar

Heather, visits from family are great if they do indeed happen. Most everyone here, myself included, , has dealt with visits that tailed off as the person declined. But even if they continue, they are no substitute for the next of kin or POA. You are the one who will be called in emergencies. You are the one who will need to be talking to medical and facility staff, monitoring the care she is receiving, dealing with problems or difficult behaviors as her disease progresses. This is very, very difficult to do effectively from across the country. All of us here are or have been caregivers, and we know only too well the challenges you will be facing. Keeping her in Ohio may work for awhile, but it won't work long term. This is too much responsibility to put on her relatives. Now is the time to work on a transfer to California and a facility near you, ideally an assisted living with memory care available. Dementia is a progressive disease --- things always get worse.

MN Chickadee

You would need to be very clear with your uncles and cousins - the care would be on them, and can you count on them, do they want that responsibility. It's way more than just visiting for an hour twice a week. I have found even the best family and friends fall away when the disease progresses. They get less engaged as the personality changes come and the PWD becomes less like their old self and more needy, more weird, more frail, sometimes more combative or rude. Someone like a cousin's daughter is likely of little use when your PWD has a fall or seizure and the POA needs to meet them at the emergency room, or when the PWD is incontinent and hallucinating visiting them is a smelly and bizarre experience when they are having a bad day. 

There is still A LOT of responsibility even when our loved one is in a memory care facility. Are these relatives willing to take that on? Delivering supplies to the facility, going often to ensure care is getting done, being the one they call in the middle of the night for all kinds of emergencies. Assuming the diagnosis is Alzheimers or similar, dementia will affect your mother's body not just her brain, and there will be falls and medical incidents. My mother entered MC in perfect physical condition, and I have still spent so many hours in the ER with her, had all kinds of things come up where if I as her POA had been a plane ride away it would have been horrendous. If you do decide to leave her where she is, I would consult an attorney on adding an extended family member to the POA. And have the real and difficult conversation with them about what that will entail and the responsibility, make sure they read books and resources and know exactly what this disease will bring and what they are getting into. It becomes harder and harder to move a PWD. If you don't do it now and need to in later stages it becomes an enormous undertaking. Just keep that in mind. If it were me I would move her close to me now using a therapeutic fib as necessary, and get her settled in for the long haul. Eventually she won't know the difference of what state she is in. Good care and staff is what matters. The rest of the family can be the ones to get on a plane or drive distances to see her. Whoever has the POA and is going to be the one making decisions and driving the ship needs to be close to her. You may need to consider using some FMLA leave or vacation to make decisions and get her moved, where ever that is. Additionally, you have a limited number of months with your mother now, Alzheimers and the similar dementias are terminal diseases. Now is the time to spend time with her, make memories at least for yourself, show her love and care, take her on outings to do things that bring her joy. Will you be ok with spending the end of her life far away? I'm sorry you are in this positions, the decision making is so hard and stressful. 

jfkoc

Glad you found us. We are here for information, support and listening.

Please double check that the POA is durable and that the proper protocol for diagnosis is followed. Check this online or select ALZ.org at the top of this page.

Rescue mom

I’m also an only child, who lived several states away from my mom, who had dementia that started like yours. We tried assisted living for a time; she knew the area and lots, dozens, of family, cousins, nieces, nephews, etc, there, plus friends. Everybody said they wanted to help look out for her.

My experience is what others said— as she progressed, which didn’t take long, the visits stopped. They said they’d look out for her, and some would drop by once a week or so, for a few minutes. But they have their own lives, and they worked, or had grandkids to babysit, or a million reasons. Plus, as said, soon the PWD is not enjoyable to visit. The reasons are valid, and the family means well, but that doesn’t ensure you have a caregiver.  Soon she will need 24/7 care.

You can hire aides to come in, but that’s a tremendous financial drain. A geriatric care manager is an excellent idea, and  probably help for a while.

But you will be the one getting calls from the facility. I had to move my mom to me. 

And remember what someone said: love is making sure they have what they need, not what they want. It’s a huge job,mits very hard. Nobody wants to be in this, but here we are.

How we juggle caregiving from afar and a full time job? I don’t know. I could not, not past the earlier stages when aide came in a few hours a day. I’m not sure anyone has, past the early stages, without thousands of dollars monthly for aides.

It’s a lot, but I strongly recommend  what Cynbar and Harshedbuzz said. 

Cynbar

Heather, sometimes new posters come here and feel the responses are harsh, or mean, and certainly not what they wanted to hear. Please understand that everyone here sadly has a lot of experience in the dementia journey, and takes time out of their day to give advice that will save you time and heartache down the line. If you find a theme and a consensus in the replies, there is a reason for that. I hope you take our advice in the spirit in which it was intended, and at least consider what we have to say. Most of us wish we knew at the beginning what we know now, or at least that someone had shared their accumulated wisdom. I know I do.

BassetHoundAnn

Welcome, Heather. You've found a great place with lots of good people and lots of extraordinary advice. 

I am also an only child. My mom lived in another city. Friends, neighbors and relatives were checking on her every day. They were giving me reports. Each time I spoke with someone I would ask "Do you think my mom can still live alone?" "She's doing great!" they would invariably report. "I'll tell you when I think she can't live by herself anymore." 

There's something called "show-timing" which you'll read about here. It's when a dementia sufferer puts on a really good show to outsiders and convinces them they're doing just dandy, everything's fine, they need no help. 

My mom was show-timing big time. She had a medical emergency and I had to rush out to spring her from the hospital and care for her for several weeks. It became horribly clear to me how advanced her Alzheimer's was, and how much she had been hiding it. It was also clear that long-distancing caregiving wouldn't work anymore, in spite of the visits from well-meaning friends and neighbors. Only a daughter could take her to the doctor umpteen times, take her to the dentist, make sure she was eating properly, taking her medication, and a zillion other essential chores. I could have hired a Visiting Angel or similar service to check on her every day, or even several times a day, but it wouldn't have been enough. 

So I spirited her to my city, pretty much against her will. It's been a long tough journey. I can't even count the number of hospitalizations, ER visits, and rehab stays she's had in the past year. I recently moved her to memory care, so the burden has lessened, but it's still at least a part-time job checking on her, making sure she's getting the care she needs, plus handling the never-ending stream of paperwork for bills and insurance. Seems like every few weeks I get an emergency call from the staff relating to her mental or physical health and I need to rush out there, calm her down, sort things out, maybe help them formulate a new care plan or contact her doctor.  

I initially had doubts that moving her to my city and away from her old neighborhood and friends was the best course, but now I have no doubt that it was. There was no way I could have watched over her from a distance, at least not without imposing on others, some of whom made it clear they did not want to be imposed upon any longer and it would be best if I moved her closer to me.

That's just my experience. Others have taken different paths in this hard journey. There's no perfect plan. Everyone and every situation is different. 

But never hesitate to ask for advice here. Everyone is very helpful and the group wisdom is astonishing.

The best to you and your mom! 

   

ButterflyWings

HeatherRae - sending you encouragement as you navigate this journey with your LO.

This brief and clear article helped me understand so much about what may lie ahead. It made it easier for me to consider options rather than be overwhelmed by all the decisions that seemed urgent and important. Just copy and paste this into your browser.

This forum is the best thing my DH's neuropsychologist recommended to me upon diagnosis. So much experience and wisdom. All free and well meaning, and you can take it or leave it. Priceless! Wishing you all the best in your path as a caregiver, prioritizing your own immediate family, life and future while providing responsible decision making for a parent who no longer can. 

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf