Thank you all, for your support.
I'm not in denial that my mother has to die sometime, it's just that I hate having to watch the long, slow decline. Honestly, I'd rather see her go quickly.
There were many times in my life when i did not feel i had a very close relationship with my mother but somehow now that mother/daughter bond is making having to bear witness to this excruciating.
It still surprises me because due to my mother's exceptionally good dietary habits, I ALWAYS thought she would live to be very old, into her 90s. I certainly felt she would outlive her mother, who died at 84 and did not have an especially good diet. And it's possible now my father will outlive her, although he has his own physical frailties and is an ex-smoker.
I need to find better ways to extricate my self from my mother, so I can handle all this stuff better. I'm thinking yoga maybe though in the past I found it boring.
Archive for October, 2015
Thank you all, for your support.
Scary stuff, from American Family Physician:
"One fourth of elderly persons who sustain a hip fracture die within six months of the injury. More than 50 percent of older patients who survive hip fractures are discharged to a nursing home, and nearly one half of these patients are still in a nursing home one year later.18 Hip fracture survivors experience a 10 to 15 percent decrease in life expectancy and a meaningful decline in overall quality of life."
My mother arrived at the geriatric psychiatric hospital unit 2 days ago. Since then, she has fallen twice. She is okay, but what about the next time.
She fell in rehab several times. She fell in the hospital. She fell in assisted living. I've lost track of how many times she's fallen in the past 2 months.
Each time she's been moved to a different place, I've tried to make it crystal clear she is a high fall risk and that they should take care. It does not seem like Masonicare hospital unit was very well briefed by Masonicare rehab/assisted living, because she didn't start out with a belt on her at the hospital unit.
When she fell there on Tuesday, the nurse acted like it was no big deal, saying "she just took a tumble, but she's okay." I felt like strangling her. WHAT ABOUT THE NEXT TIME? Will she be as blase about it when she falls and breaks her hip again??
When I talked to her supervisor, she said they COULD confine her to the chair, unlike the assisted living place, with my permission. I THOUGHT she would be safe after that, but I was wrong.
Finally, tonight, after I lit into the nurse who told me she fell there AGAIN, she spoke to a doctor and they will have a nursing assistant with her overnight, then review her case again tomorrow.
My mother is extremely weak from sitting around for 6 weeks now. And no matter how many times she falls, her dementia will prevent her from understanding how dangerous it is for her to try to get up and walk on her own.
When kept in a wheelchair, she's safe, but sedentary, and none of these facilities have the capacity, it seems, to work with her and give her the kind of daily exercise she needs if she's ever to recover an ability to walk again.
This is how it goes, I've heard, with old people who break a hip. They never truly recover and then it's a long, slow decline after that.
I truly feel it's only a matter of time before she falls again and breaks something, requiring surgery. Then her mind will really be gone.
This is what happens when you put a loved one in any kind of institution, I don't care if it's a hospital, rehab or assisted living. You lose a lot of control over what really happens to them, because the truth is, no one can watch someone 24 hours a day, seven days a week. They are not staffed to do that with every patient.
I can't take her home to live with me. She's beyond my ability to care for her myself. I was exhausted after just 1 particularly trying hour with the aide when she was delirious. Even if I hired a live-in aide here, I don't think she'd be safe. The only way I could ensure she was safe is if I quit my job and took care of her myself, and possibly not even I could save her from falling again.
The Masonicare people told me yesterday my mom had to go back to the skilled nursing unit (aka, nursing home) because they don't feel then can safely handle her needs, even with 3 "assists" (aides).
That was late yesterday afternoon.
This morning I had a phone meeting with a bunch of them and they are recommending my mother be transferred today to their geriatric medical psychiatric program about an hour's drive from me. They want to do a complete "medical holiday" to try to see what's going on.
I had thought the main reason they wanted to move her out of assisted living was because of her nightitme sleeplessness and agitation. Today they told me it's mainly because she cannot stand or walk without the assistance of 3 people, and to remain in assisted living, you have to be an "assist of one," meaning it requires only one person to help you get around.
The head of nursing had told me earlier she wasn't a fan of Depakote and had seen patients entirely lose their ability to walk. I had protested use of this drug myself several weeks ago but the geriatric psychiatrist talked me into letting them try it. But then they increased the dosage at least two times.
Medicare will cover the cost of my mother's stay at the new facility and she would stay there a week or 2 weeks max, they said. I will keep the assisted living room for at least a week or so to give them a chance to assess what's going on. There's a chance she'll recover enough to return to assisted living. But if not, she'll have to go back to the skilled nursing home, this time on the dementia floor (2nd floor), which is very depressing. (It's in the same wing as the short-term rehab unit, which is where my mother had lived for 4 weeks recovering from her hip surgery up until last Friday when they moved her into assisted living. But she was on the 3rd floor, which is not all dementia patients.)
Because I'm working and used up nearly all my vacation time this year, i probably won't be able to see my mother til Saturday at this new facility, unless I go at night. I'm not very familiar with the area, so I don't know.
I think Masonicare is doing the best they can and it seems like a fairly coordinated approach. It does relieve me that they will stop all meds for now. I'm worried about her but trying not to.
Last summer I appealed a Medicare denial of a bill my mother incurred when she called 911 because she was constipated. This was part of the chain of events that led to me moving her to an assisted living community.
The bill was for the ambulance ride to the hospital, and Medicare denied it because constipation is not a good reason to call 911. So the ambulance company sent me a bill for $665.
In my appeal I showed doctor's notes and diagnoses showing my mother has dementia, and that this was the reason for the ambulance ride, not constipation.
Technically, they were probably correct. I called the ambulance company twice to make sure the bill wouldn't become delinquent while I waited to hear from Medicare. I explained I had appealed it and when i called Medicare to inquire as to status, they said you have to wait 60 days to call and then we can investigate for you.
When I called Medicare back last week, I was so surprised when they told me the bill was fully paid because the ambulance company resubmitted the bill with a revised code.
I have no idea if any of my conversations with EMS caused that to happen or not, but i am eternally grateful. It just seemed like such an enormous amount of money to waste.
The other small miracle happened today. It occurred to me that given my mother's deteriorated mental state and since I know she'll need help bathing, that she really could use a shower seat. Just another expense, I figured. I was driving home today and turned in on my street. My neighbor on the corner had a tag sale the day before and they had a "Free" sign out for the leftovers. I drove by and suddenly noticed a shower seat sitting in the grass, exactly what I wanted! I backed up, got out and picked it up. It seems fine, and it's adjustable!
I just checked Walmart and they're selling them for $52! Wow. That one really dropped in my lap from above.
My mother did not sleep again last night... at all. And it was just awful trying to get her up this morning at noon becus then she was sleepy. The aide is very good and i like her a lot but she's only available for a few days.
I am anticipating the agency tomorrow will tell me I have to pay for 2 people working 12-hour shifts so they are not exhausted by my mother. Right now I'm paying $195 a day on weekdays but with 12-hour shifts paying by the hour I'll be paying $552 a day. It's even higher on weekends and major holidays. So we're talking well over $16,000 a month. The Masonicare rent is another $5350 a month for a grand total of $22,910 a month in costs! That gives me 10 months before the money runs out. There's no doubt I need to start the Title 19 paperwork this weekend.
I got the Medicare statements for all the expenses associated with my mother's surgery. The out of pocket I'll have to pay is only $552, which I don't consider too bad.
If my mother's sleep patterns improved, I could possibly go back to the live-in aide at the lower daily rate, or if her strength and walking improved, I could possibly not have a live-in aide at all. But by the time either of those 2 scenarios happens, I'll have run out of money anyway. It's just an impossible situation. It makes me angry to squander $238,000 in this way but that's health care in America for you.
Unless I get a call from Masonicare about something bad going on, I'm not going over there tomorrow.
I plan to put on my favorite old sweatshirt and run my mower over all the fallen leaves and mulch them. I may try to make one of my favorite recipes, sweet potato chunks with black beans and a cilantro/olive oil dressing.
I surrender to whatever happens with mom. I can't arm wrestle God and expect to have my way. I'm just spent. I've done what I can do, and now it's up to her. This may be the way it has to be. Acceptance comes hard to someone who's used to strong-arming her way through life through force of will and determination.
There's no use putting the proceeds from her condo sale into an Ally online money market account. What's the point in complicating my life now or at tax time? $100,000 will earn $1,000 in interest at 1%, so I have a little more than that in the account. But when you're talking such big monthly expenses, for the aide and the assisted living place, $1,000 is a meaningless number.
What I really need to do is find time for the next dreaded task....prepaying for funeral costs. I plan to go with cremation because I believe it is a greener alternative than burial with toxic embalming fluids in the ground. I know I don't want to keep the ashes; it will be too upsetting and a constant reminder. I guess I will have to do what other people do, spread her ashes somewhere that would be beautiful or meaningful to her. She always loved the ocean.
I need to do some comforting things for myself. I can browse Amazon and decide how to spend some $30+ in gift cards. Soon my $500 worth of other gift cards will arrive in the mail.
I will continue to talk to friends who all offer what support they can, in their own way. I find myself talking to complete and total strangers about what I'm going through because I feel I feed on the support I receive. It's the only thing that keeps me going, honestly, aside from my love and compassion for my mom.
This wasn't supposed to be another blog about mom, but as you can see, it is....
And I'll continue my walks in the woods. I'm not a very religious kind of person, but for me, the woods are my church, the tall trees, my steeples.
2015 will be a year that goes down as the Great Depression for me, not in terms of the economy or the state of my finances, but in terms of what's happened with my mother. I'm losing her by degrees, so while I'm spared the shock of a sudden illness or death, I watch her decline, both mentally and physically, each week or month.
My dad took me out to dinner and movie a week ago, calling it our "date." He doesn't often really know what to say when I tell him stuff, but I think he was trying to give me a break from everything going on. My dad, an only child like my mom, must have gone through similar challenges when he had my 89-year-old grandmother move in with him when she had lung cancer. She didn't want chemo treatments, and so she slowly died, hyped up on morphine and painkillers, to the end.
I wonder if we should all plan an Email Nate and Jeff Day so that if we flood them with requests on that one day to fix the photo capabilities on this site, maybe they will finally do something.
So after interviewing 2 live-in aides for my mom earlier this week, she started yesterday. I showed her around the 3rd floor and where the little kitchen was that she could use to cook her meals and store her food in the fridge.
She was quite insistent that the fridge wouldn't do because it didn't have a lock on it and she was concerned that dementia patients would help themselves to her food. She asked for a fridge in the room in a rather demanding way. Luckily, Masonicare had one and put in the room for her.
I also paid her $60 cash for the first week's food stipend.
I picked this woman because it seemed she knew what to expect. She had lived with an advanced dementia patient for 3 years until she died.
So yesterday I went to Maplewood around 9 a.m. to empty out the closet there, met my friend Dave there at 10 and he and a maintenance guy moved my mother's dresser, bed, a table and chair out into
Dave's van. We donated my mother's 2nd dresser to Maplewood so we wouldn't have to move it.
We brought it all to Masonicare and set everything up. We hung a bunch of art pieces on the walls. The aide arrived at 2 pm and we went over stuff and i introduced her to my mom. I sat with the money person at Masonicare for over an hour to review and sign all the paperwork, and write the check.
Finally, I went home around 5 p.m.
This morning I was back at Masonicare at 9 a.m. because there was a social worker who wanted to meet with me and my mother. As I was walking into the lobby, I saw the aide walking toward me. She said my mother had been up all night and I could see she was upset. I said, tell me more about what happened, but just let me drop this stuff off in my mother's room. (I was carrying extra clothes and Depends.) She kept going in the opposite direction without saying anything and I assumed she was coming back shortly. She never did. And she didn't return the $60 I gave her for food, either.
I only learned she quit by talking to the other aides there. They said she said she didn't feel well, had diabetes and was going to the hospital.
I talked to the agency on the phone, who were profusely apologetic and already looking for a replacement. If there's one cardinal rule, they said, you never walk out on a patient. They said they would make sure I got m y $60 back and told me she was terminated.
One of the agency staff people arrived with the replacement aide at 2 pm, who can only fill in for a few days until a permanent replacement is hopefully found. The fill-in aide seems very nice and there were 2 of us filling her in on the situation, so I hope she knows what to expect. She is an RN.
Apparently the first aide called the agency at 8:30 pm last night and said my mother was agitated and not sleeping. Well, geez, it's 8:30 pm and when i left there around 3 pm the day before, she had put my mother in bed becus my mother did say she wanted to lie down for a while. I don't know if she let my mother sleep for hours or what. But that and the early bedtime could account for part of the problem.
After I learned I would be meeting the new replacement at 2pm today, i saw i had a few hours to kill and decided to stop sitting in my car and crying and made myself do my errands: a dump run and a trip to an organic apple orchard my dad told me about. I got into an extended conversation with the orchardist there who was very nice and sold all his many varieties for just $2 a pound. I bought 7 pounds of apples to take my mind off my troubles.
After leaving Masonicare today round 3, i went for a walk where i usually go and enjoyed the autumn foliage, wishing i had my camera with me.
I kind of feel like giving up. The next step will be, if they can't find an aide who can find ways to deal with my mother's sleepless nights, is to hire 2 12-hour shift aides at an even higher price than I'm paying now, which is around $195 a day, $205 on weekends and close to $300 a day on major holidays. So the money would then run out even faster and put my mother in a nursing home pretty quickly, which I've been trying to forestall for as long as possible. The other option is to put her in the nursing home now and private pay for it til Title 19 picks it up, although that doesn't really get me anything for mom tho it would give me fewer responsibilities.
This is all just too exhausting. While waiting for the replacement aide to show up, I tried spending time with my mother, but i think becus my general stress level was way up and my patience down, my mother was getting agitated, and so i wasn't able to take her outside to enjoy the "fall festival" that was going on. She was talking and making no sense, seeing people who weren't there, and at one point during her in-room breakfast she was trying to eat a latex glove on the table. This all would have shocked me 4 months ago but now it just depresses the heck out of me.
They say that dementia robs you of your loved one by degrees, and that is very true. Each day, each week, each month, you lose a little bit more of them, and somehow you know you'll never get them back.
Everyone at Masonicare seems super nice and supportive, from the Haitian aide on the floor to the nurse, admissions director, the money person and even the maintenance crew. It hit me as I was signing all the paperwork that I should have come here first, but I was seduced by Maplewood. It being a non-profit, I trust them not to gouge me, and she said their board of directors is happy if they break even, but don't require they even turn a profit. Their mission really is to take care of the families of Masons. My German grandfather was a Mason, so I kind of feel a connection there.
Monday was a day off and I spent most of it making phone calls to try to find an agency that could place a live-in aide with my mother on very short notice.
It got complicated because some agencies say their aides are independent contractors while others said they treat them as employees. Although the one agency said i wouldn't have to worry about paying FICA and other taxes, everything i read online said that senior caregivers are usually considered employees, just like nannies or live-in help are. If I can control how they do their job and they can't work elsewhere, they're employees.
Of course the rates for aides who are treated as employees and paid by the agency are higher.
I was on the phone with multiple people at Masonicare too, and got my friend Dave to agree to move the furniture on Friday morning. My mother will be moved in that day at 4 p.m.
Tuesday I went in to work but was still making phone calls at my desk. I wanted to go in to work because this was the one day they were offering free flu shots and biometric screenings and anyone who got those 2 things done gets $20 subtracted from their monthly health insurance premiums.
I worked yesterday and today from home, and between work, I met 2 aides at Masonicare and interviewed them there. Both are Jamaican and from NYC. The one I met yesterday drove up and the car broke down, so instead of meeting me at 2:30 pm she finally made it there at 5. The one I met today missed the train but managed to get here on time.
Last night after work I ran to Maplewood and stuffed my car with stuff, then brought it home. When I met the 2nd aide at Masonicare today, after a morning dentist appointment (I told the dental hygienist this was most definitely going to be the most relaxing part of my day), I also dropped off what I'd picked up at Maplewood last night. Then I raced back home because I didn't tell my boss I was doing this.
Tonight after 5 was a repeat performance: raced to Maplewood, stuffed the car with more stuff, then dropped some of it off at my house and then brought the rest to Masonicare. It's a real pain coming and going from either place because the doors on dementia units are locked, so you either have to use a fob or punch in a special code and it just takes longer.
I've been talking a lot with the two women at the aide agency. I picked the older aide who's a year older than me. Her husband is going back to Grenada but she is staying here. She lived with a dementia woman in her home for 3 years til she died.
The other woman was around 40, but I learned she had 10- and 12-year kids at home with her husband in the Bronx, and while she said it was okay, it seemed to me she would really miss her family and would probably end up making trips back and forth a lot, possibly affecting my mother's continuity of care....although she doesn't have a car. She said she could take a taxi to the grocery store, but it seemed like it would be difficult to live like that.
The other one drives and Masonicare said she could keep her food in the fridge down the hall and cook in the small kitchen there. She can also use their washer/dryer but they won't do her laundry, just my mother's.
The room is going to be a little cramped with the 2 twin beds. I'm moving just 1 of my mother's 2 smaller dressers over from Maplewood, plus her table and 2 chairs. The aide will have her own closet with a shelf above and they'll share the bath. My mother's new wheelchair will take up space, but I'm not bringing all the artsy hobby stuff (sketch pad and colored markers, yarns, the small table loom) because my mother never touched these things and I've come to the conclusion that the Alzheimer's, cruelly, has truly robbed her of ever being able to create art again.
I have concerns about my mother's general nighttime agitation keeping the aide up as the aide is entitled to 8 hours of sleep, along with 3 free hours daily. I'm also to pay the aide a $60 a week food stipend.
This is all going to happen on a wing and a prayer. I have to say that Masonicare did everything on their end in a speedy and efficient manner, although I still haven't' signed the contract and paid because they weren't ready with the paperwork. I'll do that tomorrow. I'll be giving them about $10K to get my mother in the door (that includes 1 month security deposit.
Because they have metal walls over there, I have to get a maintenance guy to help me hang my mother's art. There's not quite as much as she had at Maplewood, but she still has a lot. I feel it's important to have a lot of her art there.
I saw my mother briefly tonight around 7 as i made one attempt to locate her Maplewood key. She could have had it on her wrist when they brought her to the hospital, but it wasn't with her returned items and I searched her old room at Maplewood everywhere. If you don't return a key (I have one myself) they charge you $250.)
I can try to find where in the hospital my mother stayed...this is going back 5 weeks ago now....but i would assume that if they had the key they would have contacted me by now.
The only other possibility is that the staff at maplewood removed the key from her wrist before the ambulance took her away. I would just make a copy of my key, but it says on it Do Not Duplicate and I assume most hardware stores would honor that.
I'm pretty tired, and tomorrow's going to be the longest day of all, and it will mirror the day in May that I brought my mother to Maplewood. Will go to Maplewood around 9 a.m. to empty out her closet and put in my car; Dave will meet me there with his van at 10 a.m. and then we'll bring the furniture out. We'll drop the 1 dresser at my house and then bring the rest of the stuff to her new place at Masonicare.
I'll have to sign the paperwork and write the check around noon. My friend Dave will probably then take off. The new aide arrives at 2 p.m. and my mother will be moved in at 4 p.m. To help mom acclimate, I'll probably stay for dinner with the aide.
Saturday they're having some sort of fall festival around mid-day and was planning on taking my mother to that anyway, so maybe do it with or without the aide, I haven't decided.
Sunday will be my own time and back to my regular work week next week.
My new boss has been asking me to let them know when a good time for me to visit for the day up in Boston area is and I'll have to do it at some point, although it's exhausting and I hate having to do it...a very long day.
She knows what's going on with my mother so I get a reprieve for now but can't put them off forever.
I redeemed my $500 in gift cards from Citi Thank You Premier and got cards for all the stores I usually shop at: Lowe's, Macy's, Walmart, Home Goods.
So to recap, I learned Friday night that Maplewood, where my mother resided before her fall and hip surgery, estimated my costs to keep mom there would jump from about $69,000 a year to $144,000 a year because they felt she needed a live-in aide AT Maplewood due to her high fall risk.
Talked to Masonicare this morning. I tried to get them to delay her discharge from rehab this week to give my mother more time and me more time to figure things out, but the very latest they can release her is this Saturday.
The rehab guy said he could not justify keeping her in rehab any longer (even though she would continue to get rehab in assisted living, wherever she goes, afterwards).
I am going to view available rooms at Masonicare in an hour and then meeting with the nurse who evaluated my mother and to go over costs of having her there instead of Masonicare.
As mentioned previously, a huge benefit of moving her to Masonicare, which admittedly is not nearly as new and beautiful as Maplewood, would be that I would guaranteed a room in their nursing facility when my mother gets to the point of needing that.
The Masonicare social worker I talked to on the phone said she had a quick conversation with the nurse, who it sounds like may recommend Level 4 care (the highest they offer) but not a 24/7 aide. I will find out exactly what level 4 care includes, but even at level 4, which is $3406 a month, and the base rent of the smallest space available, a studio, at $4318 a month, for a total of $7724/mth, this would be substantially cheaper than the roughly $12,000 a year Maplewood said I would be looking at.
When I moved my mother to Maplewood last May, I calculated her total assets would keep her going there for 3 years. Now with her need with bathing, dressing and lots of other stuff, Maplewood could only keep her at the hiked up price for 1 year. And so they urged me to "give her one good year" there.
But at this point I don't think the plushness of my mother's surroundings is something my mother would be as aware of now so it seems less important.
Their social worker said with an aide at Maplewood, or with 2-hour bed checks every night at Masonicare, they can't guarantee another fall won't happen. I have to resign myself that another fall is largely impossible to avoid.
We can do what we can....i'll make sure they get those bumps on the wheelchair so my mother doesn't tip the chair over again, and social worker said medicare will pay for a hospital bed with low bars so that while it won't prevent her from getting out if she really wants to, it could help somewhat. And they've already gotten her wearing a velcro belt attached to an alarm so if she takes it off, the alarm sounds. The law prohibits anything else in the way of seatbelts or restraints.
Head spinning. As usual, decisions have to be made very quickly. No time to consult with other social workers.
Left a message for friend D. to see if he'd be available this week to move mom's stuff out of maplewood. I'd have to take another vacation day to get it done with him although social worker said they could have the hospital bed in place. I'd like to have all her art and stuff already in place, though, before Saturday.
Of course, Maplewood's really going to zing me with fees. They require 30 days notice when you vacate. Since I'll be moving her immediately, i'll have to pay the last month's rent for nothing. I did pay a security deposit, so i guess that could be applied to that last month's rent. I also paid a non refundable $5,000 "community fee," which was largely a waste of money. And of course, they made me pay the $5300 rent for the room these past 5 weeks while my mother was in rehab, to hold the room.
Maplewood sucks. But i can't give notice til I"m sure I'll go with Masonicare, which I'll decide thi9s afternoon.
So the people at rehab have been anticipating discharging my mother mid-next week. The assumption was that she would return to the resort-like Maplewood. Earlier my viewpoint had been, the sooner the better, in my hope that a familiar (?) setting and routine could help her gain higher functioning.
I was not prepared for the bombshell told to me by Maplewood tonight.
They had sent their nurses to rehab to reevaluate my mother's level of functioning. She's in noticeably worse shape mentally than she was pre-surgery, but she did make progress with physical rehab. She can walk, but she must have a person with her, guiding and cuing her.
The problem they described, which I was already aware of, is this: Now that the initial pain from the surgery is gone and my mother is feeling better, she is becoming more eager to stand up out of her wheelchair and start trying to walk around on her own. She doesn't understand how frail she has become after 5 weeks of largely sitting in a chair or lying in bed (the 1st week in the hospital, post-surgery). She has no doubt lost muscle mass.
So she is lacking in muscle strength and has balance issues. No doubt this contributed to her fall last week at rehab.
So combine this imupulsivity to rise out of the chair with worsened dementia and you have another fall waiting to