I am lucky -- we can afford assisted living. My gran is about 15 miles away, and I'm there 4 afternoons a week.

I absolutely could never do this full-time, or in home. To be perfectly frank, I would go to prison, the nice hospital with the padded walls, or the crematorium.

Until 6 months ago, gran was 1000 miles away. She had some distant relatives in the area, but nobody emotionally or financially or legally close. My mother & I did what we could (mom lives 800 miles further west of me) using internet banking and home monitoring and enormous long distance bills, but it wasn't enough. I made the difficult decision and packed her up and moved her here.

She still hasn't accepted that this is now home, but there is no alternative. Her former state doesn't have adequate assisted living, and there, the choice is let her be on her own or in a long term care nursing facility. She is not legally eligible for assisted living there, and that's what she needs. She falls every week or two, she can't manage her meds, and her memory is Swiss cheese. The only reason she's doing as well as she is is because she has round the clock monitoring, proper meals, meds management and people to help her. Which she doesn't recognize -- the denial is strong in this one. I can't take care of her -- today proved that. She fell in her bathroom and she outweighs me. I cannot help her up.

My husband is my rock -- he has been incredible, picking up the slack and being my emotional sounding board and talking me down when I'm ready to drive Gran to the Arctic circle and put her on an ice floe. (I'm convinced the dirty secret of any type of care-giving -- parenting, adult care or elder care -- is the dark thoughts that get one through the literally shitty days.)

Mom and I spend at least 10 minutes on the phone, 4 emails and 10 texts a day. (This is unusual for us; not because we dislike one another, but just because I'm not big on phones. We have often gone months without much more than an email.) She is also incredible in stepping up, but she's still 800 miles away and she's a widow with a full time career. Her time is limited, though she drops everything about every 60 days and comes up for a long weekend to give me respite.

I have two sisters; both have kids. (I don't.) they're also 1000 and 1500 miles away, so most everything falls to me, and the professionals who make this adventure possible. I am so grateful to every staff member who cheerfully handle so many fragile people.

Even at my relatively light load (8-12 physical hours, 4 of commute, 10 of logistics and supply chain management, 5 of financial management), it's a second full-time job. Thank ghu that we have the resources. For the first few months, we were handling this on credit and hope and a very fragile financial balance, and it was awful. One disaster would have wrecked us.

I know that some days it may seem just the opposite, however.

Totally get you about those dark thoughts. I had them too. I hope other family members realize what your sacrifice is, and express gratitude often.

I love your story, may I use it on my blog?

by "eligible for assisted living." Here anyone is eligible as long as you can pay several thousand dollars a month (unless you need more care than assisted living can provide.)

My grandmother has Type II, and a year ago, had massive muscle wastage, a pretty major opiate dose and fell frequently. When she self-selected her diet or ate what the rehab facility provided, her blood sugar spiked and plummeted regularly because both she and her local community are a heavy carb society (as in noodles on top of mashed potatoes with corn on the side?). That put her on sliding scale insulin. Her physicians had prescribed a huge daily dose of OxyContin for post surgical pain and moderate arthritis. The falls, plus the insulin meant that the state of Indiana said she had to be in LTC.

Of course, she was falling because she ate terrible food, so her blood sugar was awful; because the insulin made it worse by spiking/troughing, and the opiates made her unsteady, unmotivated and foggy. (She does have cognitive damage from her strokes, but just getting her off the opiates has done wonders for her cognition.)

She was also deeply depressed in LTC because it was noisy -- they use 110 db pressure alarms to keep people in their chairs and beds -- and she had no privacy. So add in sleep deprivation and startle responses... Many of her issues were iatrogenic.

I moved her to Colorado where we don't use pressure alarms at all; we got her on a carb controlled diet and her type II went back to only needing oral meds; we got her off the oxy and only an NSAID and she's much better. Colorado allows her to be in AL even though she does fall about once every 3-4 weeks, and she's allowed to go out on her own. She's had physical therapy to help her build balance and muscle, and while she'll never marathon, she never did in the past, either.

But yes, we're paying for it. AL is always self pay, though with Veterans Affairs Aid and Attendance, it can be helped a little.

...it's hard...and probably will get worse until one of us goes first.

Support group, respite help, anything?

I hope you can feel free to vent online at least. I think this group might be a good place to do so. I also found this site helpful when I was taking care of my MIL. The traffic has slowed there in recent months, but some of the old hands still post with helpful advice and support.


There are also dozens of threads that, if nothing else, help you realize you're not alone.

Your city/county may have some sort of senior center or council on aging. Start there. I know that most of the senior centers here have a drop-in program (day-care, but not called that). There are federal funds that make this possible.

Start here: http://www.eldercare.gov/Eldercare.NET/Public/Resources/Factsheets/Respite_Care.aspx

This site can also be useful: https://www.benefitscheckup.org

Don't forget the first rule of care-giving: don't become a casualty yourself. If you're alone, you need backup. I know it's more work on an already full plate, but it's work that lessens the future burden and preserves your resources.

not really taken to heart by many. I hope everyone here who is caregiving (especially those going it alone) find the resources they need.

You don't have to be the caregiving yeti; seek help if you need to. It's okay.

are you sure

I've been caring for my mother -- who has Alzheimer's -- for the last six years. She lived with me and my now-ex for the first three, but after we split up, I could no longer take care of her myself. I do have four siblings, but two are unable to help and the other two are unwilling.

My mother was pretty abusive when we were growing up, so there are still a lot of bad feelings within the family. But as her dementia has progressed, she's actually become a really sweet old lady, and it's been easier for me to deal with the past. I think in some ways that's been a gift, and I wish my siblings could benefit from it. But they've chosen their own paths....

In any case, it's been hard -- both emotionally and financially. I see her 4-5 days a week, take her to all her appointments, take her for drives and meals when she's up to it. Thankfully she gets a Navy pension, which covers a fair amount of her care. Nonetheless, I've slowly drained my own savings because dementia care costs a sh**load of money. I half-joke with her that once the money runs out we'll do a Thelma and Louise. She laughs, even though I know she has no idea what I'm talking about. Then again, maybe she does. :-/

But I just came across this group, and I thank you for asking this question. It feels good to vent a little. But gotta stop now before I start crying.

Good luck and all the best to everyone here!

It's interesting to hear that she's turned into a sweet person--I honestly don't think I've ever heard of that happening before. Usually it's the case that if the person was, well, mean, in their younger years, they grow even meaner once old age/dementia sets in. That must help you deal with your choice to care for her. A lot.

I don't know where or how the issue of family members using up their savings is getting addressed, if it is at all. The facilities and medical professionals get paid; it's completely wrong that family caregivers seldom do, unless the elder is well off (and willing).

Best of luck to you; I hope you'll come back whenever you need to vent some more.

It is certainly curious: My mom was briefly in assisted living before she came to live with me, and she was nonstop trouble there. Complained about everyone, argued with anyone who got in her way, took others' belongings, wandered off. This was when the signs were starting to become obvious, but the place she was living apparently cared more about having a paying resident, and was less concerned about the appropriateness of the living situation.

But at her current place, they go on and on about what a joy she is. Almost weekly, someone -- the owner, the staff, the medical people we see -- comments about how my mother's "real personality" is still intact. A favorite line from her doc: "It's just so wonderful that despite the dementia, her basic personality still shines through. That must be such a consolation for you."

It is, but not for the reason she thinks.

Life is interesting....

I heard so many stories (at another site) about the elder being just awful--except to medical people and others outside the family circle. So that, the others thought the elder was "sweet" and "adorable." This was the situation with my own MIL, and it drove me crazy, because in private she was a holy terror. I'm glad your mom is sweet inside and outside that circle.

thats amazing

I have a very small family, my 2 older sisters took off as soon as they could and I was left caring for my Mom alone the past 30 years. The past ten years have been increasingly demanding, with her having serious ongoing health issues and now financial and emotional issues. I reach out continually to family members (there are only three in the picture) and get next to zero help. The sister who is still in the picture promised me years ago that I would not have to care for our Mom alone when the time came, but (after much denial) I now understand that her intention is to remain as far away and uninvolved as possible.

There are very few social services where Mom currently lives and she is stubborn about asking for/allowing help, to boot.

The pressure gets to me and effects my own health and life. I am starting to do some work on that with a professional, but I know that my responsibilities will only increase as time goes on and I fear the future. And I resent the shit out of my family for leaving me holding the Mom bag on my own.

Lots of caregivers neglect their own needs in the flurry of responsibilities foisted on them by the recipient, so I'm really glad to hear you're getting some help along those lines. Maybe your professional can help you stand up to your mother about getting in some outside help. That may sound harsh, but elders sometimes don't seem to realize the toll their needs take on the caregiver. Or care, in some cases. You have the right to live your life and to take care of yourself. Because if you get sick, then what happens to Mom? And after she's gone, what will be left?

Hang in there! Feel free to PM me if you need a sounding board. Or post here too, of course.

appointments and we are going to start with a PCA who helps me exercise once a week.

I hope you are well and strong!

Am now 73 years old with diabetes. One of the cautions that I can give to anyone taking on long time care that prevents you from working outside the home is make sure you have a source of Social Security. I was divorced with less than 10 years marriage so am not eligible for my exes Social Security and did not have the money/time put into Social Security on my own so I now receive only a minimum payment. What I am telling you is that what we do a care providers is not seen as work in any form by Social Security. You can end up very poor. Check it out now.

family and friends are far away from our elder relatives. My 93 year old dad has lived with me for 3 years, and got a recent e-mail from my nephew (Pop's grandson) asking me to say a big hello to him. Nephew lives in N.Y., we live in California. I wrote him back saying it would mean so much more if nephew communicated with him himself. Pointed out that snail and e-mail, not to mention telephones are still working and go a long way.

If distant family members are unable or unwilling to be there to help, I think they should still be encouraged to be in touch.

But she seems to conveniently disappear when things get rough.

I'm so scared of what will happen.

My sister lives 1500 miles away.

My sister would turn her hands if my parent's house was on fire and *if* it didn't conflict with getting her hair done.

Last edited Mon Apr 10, 2017, 02:47 PM - Edit history (1)

..and I live 75 miles away so when I come to do a safety check or help with housework I have to leave hubby and the dogs for days at a time.. every week. Once I walked in for a 2 day stay and was here for 5 weeks.

One sis who is a nurse needed extensive (transplant) surgery and is out of the picture....the other sis has a full time job and shes 45 min away so she can come one day on weekends or after she gets off work at 6 pm...way too late to be of any help, more of a hindrance. Just trying to get the parental units to move closer to me but my 92 yr old dad is not on board fully yet...has some dementia and keeps forgetting or is totally against it. Once we get them relocated they will be in a town with all the kids and grand kids...they are all willing to pitch in at that point.