How to caregive when you live out of state?

Dementia reaches a point where it's no longer safe for the elder to live alone, and Memory Care Assisted Living becomes necessary. Or for someone to move in with her full time, or for her to move in with one of her children full time. What she wants isn't always what she can have, when disease sets in, unfortunately. You can't remind a demented elder to do things either.....their minds just dont absorb little notes or calls, etc. For example, I put up an Alzheimer's clock in my mother's room. It shows the day, date, time and whether it's day or night, in large neon letters and numbers. It sits right in front of her recliner. She doesn't remember to look at it, so she never knows what day it is and is chronically confused.

Good luck figuring out the next step to keep your mom safe.

Well. If she lives a 20 minute *drive* from town, it isn't likely - is it? Is she a terrific hiker? - that she really did walk there. What was the context when she talked to you about "walking into town"?

I should go back to Home Instead and enlist them as allies. The goal is for you and your sister and your area manager to persuade your mother to accept regular support as a condition for her to remain at home. Stress that this is how she gets to stay at home in her house with her dog, and that everyone is on the same side on this.

Remember, it isn't an argument you need to win - it's a developing situation that you can take your time over.

Are the phone calls working to prompt her to take her meds?

As has been stated by the other responders, you are at the beginning of a process. In order to know how and when to move forward, you need to decide what you want the outcome to be:
- manage multiple hired caregivers and your LO long distance
- move your LO to a facility where you live and manage her care locally
- care for your LO yourself in your home until you no longer can

There really aren't any other options. Friends, neighbors and churches can only do so much and are ultimately not responsible for her health and safety. Your mom's cognitive condition won't stay the same...it will steadily get worse and you will eventually come to a juncture where you will need to pull the trigger on some decision. You don't want to do it in a crisis. It doesn't really matter what your LO wants if it isn't feasible or realistic. The caregiving arrangement needs to work for BOTH you and your LO or it isn't working. Period.

I was caring for my MIL with short-term memory loss who lived only 6 miles from me. I worked full time and had young kids. I didn't want to stop in to check on her every day because I was busy and didn't think it was necessary. So I'd call her in the morning to make sure she took her meds and ate properly. She promised me she was doing that. When I checked - nope, she wasn't. She wasn't lying...she really thought she had taken her meds and eaten. But her fridge was full of rotting food and there were no signs of her having eaten anything in her garbage or sink (no dirty dishes, no wrappers or containers). Her pill minder had all the days open and the pills scattered everywhere. I had even "walked through" her taking her pills on the phone ("get a glass of water, open Monday, take all the Monday pills"). She wasn't really doing that either. She wasn't able to do it. She had to go into a facility for her own safety. You can hire an agency for now to buy yourself some time but you will need to eventually decide how much time you want to invest in managing. You can't avoid this decision. Dealing with it sooner rather than later avoids a train wreck for the both of you.

It might be time to either have a caregiver live in or you may have to convince mom to move to Assisted Living or Memory Care.
Unfortunately all it takes is 1 incident that will send her to the ER. If she is found in time..
With dementia you can never tell what is going to happen when. She could decide that she needs something from the store and wanders off..
She could slip on the floor, slip in the bathroom..what happens if she is on the floor for 12 hours, 24, or more? Would she recover?
I hate to be a downer on this but it is a bit of reality.
If mom has a diagnosis of dementia her doctor could state that she is not safe living alone. That would give you some ammunition for a full time caregiver or a move.

Your mom may not need a caregiver service at this time but a Liaison. Someone who can check on her 3 times a week that will make the visit time as needed. A friendly visit. A Independent Contractor not attached to a business that implies she needs help, sometimes this can cause rejection of services when the individual wants to stay independent themselves. Address it as a lady I suggest someone 55+ that doesn't necessarily have to wear a uniform who will come just to check and see if you need to run errands or help with the mail and housekeeping, non-medical services being that you described her services as non-medical. I was the liaison for a out of state family who mother at the age of 94 still lived alone, and this was the approach used, because she to would send caregivers away. If you are the person responsible for paying for services allow it to be at as needed for hours spent and a show up fee if your mom refuse entry, until she adjust. Even a show up can determine if all is good with your mom. Independent Contractors are consumer focused providers and use both regulated and non-regulated approaches. Try the friend\ companion, no uniforms as allowed service approach. Letting your mom be part of the decision each day if there are no safety issues non-medical care services involved. I hope this helps or give you an idea of how to go about ensuring that your mom is safe alone while assisting her in her needs at the same time.

At about age 91, my mom began to have trouble with her legs collapsing under her. She was in an apartment in a building that rented mostly to seniors. She had good neighbors on every side. And she had Visiting Angels coming 2 or 3 times a week. She had family in the same city and one niece was diligent about visiting her and taking her to do errands like shopping, and another who kept her involved in her family’s life with 3 young and cute and active sons who loved their “GG”. It was as perfect a situation as could be and she loved it!

Then the niece who was closest and most active died a tragic death and all of this began to fall apart. Turns out no one was even calling her every day, much less checking in. It just sort of drifted into a pattern of benign neglect. Finally, she collapsed one night trying to get to the bathroom and could not get up again. Yes, she had one of those buttons she could push and they would call and come out if needed. But she didn’t want to “be a bother”, so she didn’t push it. I’ll spare you the grim details, but this well-groomed former nurse lay there in her own soil for 3 days. Did she shout for help? No. Again, her life was about not being a bother. On day 4, the Visiting Angel came and discovered her and did what was needed to get her to the hospital and call local family. She was severely hydrated and had lost the ability to feed herself or write her name, could barely use her hands at all, etc.

She went into rehab and recovered some functioning. She was very happy in rehab and would have been content to stay there, but Medicare only allowed 30 days or so. Her second choice was to go back to her apartment, which she loved, and live there. It was a one-bedroom, so even though she was willing to have a room mate who would keep an eye on her, that was not feasible. After trying a few AL’s, it became clear she was not adapting but was rather feeling that she had been abandoned in the hands of strangers who, we discovered, were not very diligent in her care. Finally, she moved in with my husband and me, several states away. She made that transition well, but required 24-hour-a-day availability even though she was also independent in many ways (occasional hallucinations, etc). We cared for her for the final 9 years of her life. I tell you all this as background to what will be an unconventional point of view.

When you say your mother only wants to live in her house with her dog for the rest of her life, my response is “then let her do that, but use the liaison suggested by MyCalling”. They can check in and be there to make arrangements before an “incident” turns into a “crisis”. Wish we had known about liaisons. Even though my Mom loved me and my husband, she never stopped deeply missing her independent living situation. In many ways (particularly with the low level of care she received in the AL’s we explored) she was experiencing what, to her, was “a fate worse than death”. She was a very committed and active Christian and was absolutely not afraid of death; almost welcomed it. The older I get (I’m 72 now), the more empathy I feel for that desire to just be left alone for come what may. I hope my children do NOT do for me what I did for Mom in the name of caring. We cared for her for 9 years and don’t regret a moment of it. But I often wonder if it would have been better to just get a DNR and allow Mom to live happily in her community of seniors with a daily welfare check. The situation you are facing is one that can rip you apart. But my “hindsight” wishes for Mom would be to make the apartment situation work in some way. I had not seen her happier or more involved in 10 years. I have begun to think deeply about why we are so addicted to “keeping people alive”, even when quality of life is gone, but the healthy physical body keeps going like the Energizer bunny. Give me quality of life with minimal “supervision” please. Maybe your Mom feels the same.

I did long distance care giving for both parents for years. Same situation as you and many others, stubborn, dementia, wouldn’t allow help in the house, meds mixed up, not bathing or eating, dad wandering around in his car and on and on......

There comes a point where Its not sustainable. For you like most of us, it will take a crisis to force the issue of moving to a facility or getting in home care. Your the parent now. You have to protect her whether she likes it or not.

I put 60 thousand miles on my car making the trip home for each crisis. I’m mid 60s and those 12 hour drives were not easy.

You’re not likely to get mom to agree to anything but at some point you quit asking and start doing what has to be done. For me it was a big hot mess getting my folks into assisted living but they adjusted after awhile and I started to get my life back. I had developed pretty serious A Fib during all this. Just had my annual physical and it has abated very very nicely.

My parents lived in Florida, and I live in Georgia. My parents moved up here when my dad's health declined due to COPD, and my mom just needed some help with him, (from me). He passed away a few years after the move here, and about 9 years later, my mom got Alzheimer's. She had been living independently until then, even going to Florida for the winters. When she showed "concerning" signs, she moved in with us, which in some respects was easier than me going to her apartment every other day or so to check on her, and calling her daily. In some respects, it was harder having her live with us, because I was "on call" for her needs 24 hours a day. She had visual and auditory hallucinations, she'd storm out the door, etc., so it was a good (if exhausting) thing that she was here. Is it feasible for you to make room for her and her dog (we had a dog too, who loved her, by the way), and maybe hire some help, or get a volunteer to stay with your mom for a few hours here or there, to give you some respite? I was lucky in that my husband retired early, so he watched her when I worked part-time. I even wrote a book about our travails taking care of her, entitled "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I never expected that my once bright, articulate, well-educated and nice mom would get Alzheimer's, but no one does I guess. Best of luck.

INatalie cameras in the home.

If she is mentally sound, let her live in her own home with her dog .

Install cameras so you can keeo an eye on her any time, 24 7.

I had Nest Cameras installed at my Dad's house and they are great. You can see and hear..

She can take a Uber in to town for appointments.

If she has a cell phone and knows how to use it then she'll be able to call you if she gets lost, while on a walk or for back up, she can wear a First Alert in case she falls, ect.

Definitely no Uber, my dad has dementia and lives with me, these people are stubborn and revert to being children, so honestly sometimes that's how you have to treat them, your mom needs help, hire the people back and leave a note, stickies are great, basically I would threaten, you either let these people come help and you can live here forever with your dog or you will have to go into a home. Sorry it's blunt but that's the bottom line. My father will refuse to take a shower for days, being nice and reminding him constantly to shower has little result, but turning the tv off and telling him shower or no more tv does the trick every time.

Try an agency again and let them know that YOU make decisions about the hiring and firing of staff. Mom may tell them they don't need to return, but they are used to hearing that. You will have to figure out a way for them to get inside if she locks the door. Perhaps one of those key lock boxes that requires a code to open, like real estate people use. Or, if there is a next door neighbor who is always home, they may not mind caretaker getting a key from them as they come and go. If you hire privately, you can give them a key if you are comfortable with that.

See about setting an alarm in the general area where mom would be when it is pill time. Have pills in that area, too. Or when you call about the pills, tell her she needs to get them while you're on the phone. If you can get someone to put up some cameras, it would be helpful so you can check in on her via camera during the day. She may or may not be wiling to wear a necklace alert button, but well worth it if she would remember to push the button if she needed help. I recommend Great Call Five Star - it has gps, so if she did wander you could locate her. Works inside/outside the home without being limited of staying close to a base station like some of the others do.

Since you seem to have a pretty good network of help to check on mom, I would encourage you to have them drop by when caretaker is there to see what is going on. Maybe being unobserved, they were just hanging out for a while and not really doing anything.

If this doesn't work, try an assisted living where she can have the dog. Pets are really important, in my opinion.

I hate to tell you this, but she's only going to get worse until one day you will have no choice to possibly put her in an assisted living like my Brothers and I had to do with our Mother. All 3 of us worked, had our own families, and/or lived in another state, and/or had no spare room She fell and broke her arm so were able to use that excuse to put her in one, close to where my younger Brother and I lived so we could visit. I found a social worker for the placement and she had 24/7 help if she needed it. It's the hardest thing to do to your own relatives, but you got to do what you've got to do. You can not rely on your neighbors all the time. I learned that the hard way. Good luck.

As others have said, ,it will only get worse. My mom would fire or send home any aides that we had to come in the house and complained that they weren't "interesting" people. (She was a PhD and very snobby about friends.) Finally, after she left the burner on, was calling people in the middle of the night because she was too hot or cold, etc. We finally convinced her that she should just go to an AL facility for a "trial" period to see if she liked it. Of course, we never planned to move her out of there. The only hiccup you have is her dog. Being close to my dogs, I totally understand her wish. I have no idea if there are any ALs that accept pets. But I'd find one that you like and arrange for a "trial" stay and then just not move her out. Sounds harsh, but it is for her safety (and, frankly, that of her dog who she may soon forget to feed).

Imho, this, too, was my mother. She was adamant about living alone in her own home 7 states away from mine. With an entire host of ailments, the sticking point was very low blood pressure (bordering on passing out at 60/40) and when I had to leave my home and move in with her. I do NOT advocate that you do this. It was tough. I'll pray that you can come up with a resolution.

Deep down you know its only a matter of time until something happens. I tried this with my mom with Dementia and it worked. I told her that I can not sleep at night because I am worried about her. I don't want to move you out of your home because I know you are comfortable there and feel safe BUT we have to do something. Mention things that you noticed that are not SAFE that she does. Don't end the convo unless you both agree that someone can check in on her a few days a week. Explain to her that this will help you sleep better at night and ask her to do this favor for you. Make it all about you and how she is helping you! You may be surprised how cooperative she will be when she feels like she is doing this for you. Good Luck

I suggests let mom choose her caregiver from interview of 2 or 3 caregivers. That would allow her to feel she is in control of her care and her need to be independent is respected. Also not to refer the caregiver as a aide but as a personal assistant
(office assistant) may help her to see the help in a different light.

dlwyma,

This is such a tough situation!!
I understand all to well that sometimes you have to put your LOs safety over there wishes!!

I became responsible for my Aunt in another state 14 months ago.
She has Alzheimer's.

She refused to leave her home and refused to come home with me, so I started pointing out things that needed repairs around her house.

After I found a wonderful LTC facility, I had to tell a "therapeutic fib". Yes, it's a real term.
I told my Aunt that she needed to stay there while repairs were being done on her home. Of course I new it was permanent.

It took awhile, but she has settled in nicely! She keeps busy with the activities offered. She loves the food and staff. Has made many friends!!

Her house has been sold to pay for her care. It makes it easier for me being so far away to know that she's safe and sound. I can't even imagine what would have happened if she had been left alone in her house!!

She still talks about going home once in a while despite being told many times that she is home, but even that seems to be lessening.

It was beyond a doubt one of the most painful things I have ever had to do! Hindsight is truly 20/20.
I don't regret my decision!
It honestly was the right thing to do for her!!

(((Hugs)))

There are alert button services available that will contact the person wearing the device if they are laying still for too long during the day.

They will contact the person/patient, even if they do not press the help button.

If there is no response, they automatically call a provided contact number. If no one answers that number promptly they call the police for a welfare check.

Can you sign on with one of these services? She can wear the device as a waterproof watch or pendant.

As far as walking into town. Did she get there and back safely. Walking is healthy.

As for the time it takes. It takes me 20 minutes to drive to town, due to traffic and stop lights, but it still only takes my children 20 minutes to walk into town.

So, if she is strong and walking well, why not allow her to walk into town, if she can no longer drive?

Also, sadly, many ( but not all) of these home health aids steal things from the home, and this is why the patient does not want them in their home.

Often the patient does not complain. If they do, sometimes family members attribute this to paranoia and the person is afraid to complain again.

Have you delved into why your mother does not want these people in her home?

I have heard of cases of theft by home health aids verified by video camera, after family members insisted the patient was only paranoid.

Can you have a home health aid stop by briefly to ensure she takes her meds?

Also, they should ask her if she needs anything else....such as help with shopping, etc.

If she makes the decision on her own she may be more accepting of the help.

Perhaps if they just stop by briefly to check on her, rather than stay in the house for hours, you mother will tolerate their presence more easily.

Do you have medical and financial power of attorney?