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Remote Caregiver Burnout

More and more often, I'm feeling overwhelmed and frustrated with trying to remotely care for my 81 y.o. mother. As the oldest and most reliable of her 3 children, I am her primary "life" manager. She is in an independent living community and I live about 5 miles away in my own apartment. I have COPD with very limited physical stamina/capacity and I dont drive/have a car. My sister lives about 10 miles from either of us, drives/has a car, works full-time and has an active social life. She and I only have contact if our mother has an emergency. My mother has a chronic back pain problem and takes meds (opiods) for that and meds for other medical issues (hypertension, depression, cholesterol, etc.) I forced my sister to take charge of making sure Mom has her meds.

 

Mom had a mild stroke in March 2017. But she seems to be deteriorating both mentally and physically. At this point, she can no longer go out on her own to the store with the other seniors. She gets Meals-on-Wheels and has a Home Helper to do cleaning, laundry, and take her on errands. But she is not able to get to/from the Helper's car, get in/out of it. Once already, she gave the Helper her ATM card and PIN number to make a purchase and withdraw cash for her. I was mortified! Fortunately the Helper didn't rob her blind. She returned with the purchase, the cash and the ATM card.

 

I have a rule with my mother for her to call me every day to check in and let me know whats going on with her. But since she's on her meds, sometimes she forgets things. Always seems to be 10 minutes away from falling asleep. She does have a good neighbor that checks on her 1-2 times a day. She has my number and calls me if she is concerned.

 

I have to rely on Lyft for my transportaion needs. It costs about $10-15 each way. Since I'm on a fixed income (SSD), I can't afford to go visit Mom every day or week for babysitting. I have to pay for my rides to the doctor, for tests, and to get my inhalers. My sister can only go there 1-2 times a week to manage the meds. But she is a school teacher so even that will change when she goes back to school next month.

 

Meanwhile Mom forgets how to use her phone from time to time to make/receive calls. It's a basic flip-phone but she can't even use it to listen to messages. I have given her printed instructions, but she still has problems that I cannot always resolve for her remotely.

 

I don't think she has dementia (yet). But she seems to have less and less  ability to take care of herself in Independent Living. But she is adamantly against moving to Assisted Living, Plus she/we can't afford it. Meanwhile, I'm trying to manage my own health condition and daily living matters. My sister does not even offer to help me with anything. Not even a ride to visit our mother from time to time.

 

Well, I'm done venting for now. Have to go do some research to help Mom use her new Keurig coffee maker. She's had it for 4-5 days and still can't get it to work. My sister was no help when she was at Mom's yesterday. 

 

I don't need all this extra stress.

 

 

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AARP Expert

Hi City Gal,

GailL1 has made an excellent recommendation: A Place for Mom. I used them when i was a geriatric care manager for my clients because they had such a thorough knowledge of all the options. A board and care home is often much cheaper and more person centered because they are so small. GailL1's experience was awesome. I had a client in one that wasn't so great, but it was okay, and the thing is, it was affordable for the family. 

      I'm not sure quite what the poster regarding Gestalt/Society is talking about, but, I do wish the long term care system for ALL seniors was better funded and fairer for everyone. And we've got what we've got to work with, public policy fixes are in the future, and your mother can't operate her flip phone very well right now.

      As I read your vent, which is always welcome here in my opinion!!, i kept thinking how i wish you and your sister somehow could work more smoothly together for your own benefit as well as your mothers. Families are just plain tricky. And even the best family therapist can't fix years of resentment. Although it's worth a try. I dunno. Maybe because i work as a therapist now, and i see several families, i have a little hope for you. I work with a son and mother who bicker all day and most of the night, and they both have chronic illnesses. They've thrown in their lot together, as she struggles with COPD and CHF and he is hugely obese. Counseling helps. But they come every week with the same issues, variations on a theme. It's like they need insulin for every meal; they need therapy every week to maintain good enough relations that they don't kill each other.

       That's extreme, or maybe it isn't, but why i bring it up is because i wish you and your sister could work together better. 

       Did you ever call the eldercare.gov agency, for you, to see if there were any services you could benefit from to save you even just a little bit of money? Like transportation: Lyft picks you up and drops you off much more efficiently than the transportation services set up by most cities, where you get picked up according to the route of the day, and may sit in the van for hours, or wait for pick up for hours, but... usually the service is free or very low cost...

     Otherwise, citygal, i know we've talked before in this forum, and i think you are a marvelous juggler of all you have to do for yourself AND for mom, and i wish it was easier for you. You're doing all you can and it is exhausting, and for what its worth, i wish 'society' would be willing to pay more taxes to fund services that would help you more and help your mother more. 

 

       I'm glad you're here, venting. So tell me, what's on today's plate?

       With mad respect,

   Jane

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Your situation sounds very familiar to mine except I was 35 miles away and had no living siblings - but did have a nephew who saved the day many a time.

 

My mother was also deaf and blind in one eye - I communicated with her at the Independent living facility by Fax.  She read the Fax and then called me on her landline.  In fact, calling me was her past time - I sometimes got upwards of 30 calls a day from her.

 

One night for some reason, she turned on her oven and electric stove eyes - all to full blast and then told the nite security guard that she could not turn them off.  I had been seeing the writing on the wall for awhile before that - wouldn't walk about 50' down the hall to get her meals, medicine, which for years I fixed for her, not taken - well except for the Xanax and they were everywhere.

 

So it finalized it for me -'she had to have constant help - so either I could bring it in or move her to an assisted living facility.  Yes, either of these meant more cost but it really wasn't as bad as I thought IN THE BEGINNING.

 

Most Assisted Living Facilities have a base rate that includes room, board, meals, snacks, washing, cleaning, etc. Then from there you pay based on care levels - from only needing monitoring, to assistance, to have to do it for them.  My mother progressed to total care and then they moved her to the Memory Care unit so that she could get a lot more in a smaller environment.  Then I had to move her when her cognitive abilities left and also her mobility.  I had to move her because of A.L. Rules - safety issues like being able to evacuate the facility in the even of a fire or some kind of disaster.

 

She was then under Hospice and the Hospice nurse told me about a personal care home that I should visit.  I was not putting my mother in a nursing home if there was some other way.  I went to the Personal Care Home and knew that this was the place.  Only (5) residents - all ladies - my mother was almost 90 and she was the youngest of them.

 

It was actually cheaper than the Assisted Living facility and my mother got excellent care.  Remember she was total care and was also immobile.  They had her up, bathed, dressed, hair fixed everyday.  The woman who owned the place was Romanian and the meals were great - all fresh.  My mother ate well.  She never had a pressure sore, her dentures were removed and cleaned and they would put them back in if she would let them.  

 

The place was a large ranch home with a couple of added and remodeled bathroom for ease in bathing them and helping them use the bathroom.  The carport had been turned into an outside area where they could get some fresh air without being in the sun.  There were wheelchair ramps everywhere.  A  large deck on the back of the house which looked over a pasture and wooded area.  The owner gave us family parties there - for all the families of the residents - even after my mother died, I was invited back for the get togethers at Thanksgiving / Christmas.

 

My mother had been there awhile before she died.  It was on the 10th of the month.  I had paid for the entire month on the 1st - the owner prorated the days and sent me back a check with nothing else deducted.  

 

My mother was already using a mobile doctor and he made rounds to see her at the facility.  Nurses from Hospice were in and out.  The owner and a couple of personal care aides were there during the daylight hours.  At night there were (2) aides present but the owner only lived a few miles away and could  get there quick if needed.  Her husband did all the handy man work, built the ramps and anything else.  He was also available to help lift one of the residents if needed.  The owner was a certified med tech.

 

I am only mentioning this to you because I wanted to tell you to look around.  Call "A Place For Mom". They were very helpful to me in finding the A.L. Facility and they take details into consideration like finances.  It is a free service to you and your mom.  If you pick one of the facilities they list for your inspection, the facility pays their fee.

 

Check with your state to see if your Mom might qualify for some financial help under Medicaid or if she or her husband were veterans, there could be an assistance program there too.  Most states rate facilities and you can look on the state's audits for reports, repremands, complaints, investigations and outcomes.

 

I had looked at other Personal Care Homes and none of them struck me as special, in fact They were depressing until I came upon this little gem called "Hope House".  I know my mother was well care for in her final days.

 

Good Luck - I will be thinking about you and your Mom as life events unfold.

Just keep putting one foot in front of the other and what is best for your Mom.

 

 

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I have to presume citygal thinks there should be a political solution for the untenable, stressful condition she endures for reasons beyond her control.

 

Growing old is inevitable for everyone, part of life itself....trite, but true.  What's not inevitable is how society deals with the inevitable.  We all know what's coming...for all of us.  Opinions about how to deal with this vary widely.  Some are based on reality, some are not.  

 

Society is sometimes said to reflect the nature and the character of the people in it.  Maybe only partially true. There is a theory in psychology called 'gestalt'.  In that theory,  the 'whole' has properties that cannot be derived from the summation of its component parts.  That means an individual's traits are not necessarily those of the society he/she occupies.  Suffice it to say society is composed of people banded together to do what they individually cannot.  To have the benefits of a society[gestalt], one must also assume a fair share of the responsibilities and obligations of that society[gestalt].  Politicians determine what that may be for any one person in the society[gestalt]....rightly or wrongly or 'bigly'.  citygal is in the right place.

 

This 81 year old person was once a young person.  I have no idea whether or not she, when young, did her 'fair share' and so, is 'entitled' to have society help her out now that she cannot help herself.  After all, if citygal or her siblings had never been born, that would be the case....and she, presumeably, has nothing to do with her mother's inevitable aging.  That responsibility rests elsewhere. 

 

It's not for me to affix responsibility.  I can't.  I simply don't know how to do that fairly.  No one else does either.  They, like me, cannot possibly know with certainty what that 'fair share' is.  The society[gestalt] will have to do that...it's what they do.

 

At the mother's age, getting better amounts to the impossible. Society, by it's very nature,  has an obligation in any case.  citygal implies by posting on the political forum, Society is not discharging their responsibility in that obligation. 

 

So....now we are back to the 'gestalt' and traits of the individuals in it.  I suggest to all of you that we as a society can be better than any individual that is a part of it.....I might even suggest that is the purpose for which the United States was conceived and established.  So....why not going about making it so.  Charity won't do it....that's a cop-out for chiselers.

 

 

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@umbarch64

 

Unless citygal's post was moved - which I don't think it was - she posted on the "Caregiving" Board - where she should have.

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@GailL1 wrote:

@umbarch64

 

Unless citygal's post was moved - which I don't think it was - she posted on the "Caregiving" Board - where she should have.


I did indeed pick up citygal's post on the political forum.  I thought it 'sort of' misplaced as well.  It was at the very beginning of the political posts. Why it was there, I can't say.  I said nothing about it to a monitor. Thinking she put it on the political forum for purpose, I responded.  Given that I no longer see her post on the political board, I suspect it was indeed moved.  A few of mine have been.  I don't know what your experience has been.

 

Thank you for your compasionate, helpful and caring response to this lady. It was helpful to me as well.  So much so that I printed it out to pass on to family members to share with their friends and in-laws in similar situations.  We cannot ignore immediate needs when trying to arrive at a lasting solution. Thank you once more.  I think you did a fine job of it. 

 

The situation between siblings she describes is especially common and it is terribly divisive.

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