bump bump bump
 

Just bumping the thread tonight.

Caregiving in any manner is hard. I'm not a caregiver for my family; I work through an agency, so I am contracted out to help families with their loved ones.

It can be so difficult some days, especially ones with dementia/Alzheimer's. The hours are long, you don't get paid overtime, and you don't get paid time off, no medical insurance etc. (not all agencies are like that, but most) so when you do this job, you do it for the reward of caring for someone, and not much more.

Ive never known my client in any manner other than when I met him, but I know that it wears down his wife. I think in some ways it's harder for family to be the caregiver, because you remember what they were like before, and the emotional pain that comes with seeing them deteriorate before your eyes. Not to mention the stress of moving your schedule around, and for some even having to quit their jobs.


it's not any easy task, but sometimes it's good to get a paid caregiver through an agency, just so that you can get some 'away time' to feel like you're not losing your mind.

I give care to my disabled roommate. It is a lot to handle but the reward of helping her stay independent is awesome. I can't describe it. It takes a lot out of me lately, as the roommate I shared care with had a double bypass.

It just so happened that she came home with a dead chair and me on very little sleep. I kinda set her up at the tv and went back to crash. This person is not my family. She was just there for me in a really bad time in my life and when no one else wanted me around she talked to me. I don't feel as if I "owe" her anything. It just makes me feel good to be helpful.

The stress it brings is hard. Her problems are usually serious. Like falling on the ground serious. I've had to pick her up off the sidewalk because she tried to walk the dog without having her seat belt fastened. I should tell you....she has MS and is paralyzed and confined to a power chair.

It is sad to watch her deteriorate as progressive diseases will usually end up doing. My hat is off to all of you who do this as a profession. You are truly wonderful hearts.

Today, like every day, I handed my client his pills- one by one- so that he could take them with water

him:"I sure wish I knew what all these pills were for"

me: "I have no idea. I think some are vitamins, for your heart and for you brain"

him:"well those brain pills sure aren't working"

could not stop laughing.

Just thought I'd sign myself into this thread, it looks like I'm going to be involved in this world to some degree or other for a while.

I'm leaving in the morning for what will be my second trip to deal with the aftermath of my fathers stroke. It's a long commute, a seven hour drive each way, to go see what can best be done about a bad situation. It's early days and all pretty surreal at this point. My folks are in their eighties and I am the only child, they have no friends or community, and it seems my mother may be failing as well. I had to put my father into skilled nursing mid-feb and my mothers behavior in the facility has led the management to suggest I have her tested for dementia. I made her an appointment with her regular Dr for Monday and will take her to it as I don't think she'd find the place on her own.

I'm incredibly thankful that they have resources (financially) to deal with all of this, but there is much more to it than that. I have to find housing for my mother either way. She's okay for a week or two if I set up everything in advance and she only has to get back and forth to the facility my father is in.

She doesn't seem to do much on her own so I have spent the day batch cooking healthy food to take over and stock her freezer, loaded the car with empty boxes to put in the garage for her eventual packing, and made appointments to get things like taxes, income streams, and possible housing options lined up.

I'm in the deep end of the pool and don't really know what to do other than everything. My plan at this point is to try to establish some kind of routine, one week there, two at home (to deal with my own stuff) and see if it works. I know it will get interrupted and changed with circumstances but just need to pretend to myself that I've got some kind of handle on things. For this next week while I am there I will just focus on keeping moving and doing the best I can figure out how to do.

Thanks for listening.

i have a mother who is disabled, and needs help going to drs appointments, a daughter who lives with me who is going thru a divorce and it is a very emotional process that put her in the hospital for a short time, i have a very demanding job that does not allow much time off (and the emergencies never happen on your time off anyway right?) my home and my car are in constant need of repair or maintenance....i am feeling overwhelmed....my niece is here for spring break and we are going to have some fun :)

Although my mother lives hundreds of miles from me, we are each other's life line. A few years ago, she slipped in icy concrete at work, which set off a firestorm of health events, which brought out undiscovered physical conditions, which morphed into cancer trajectories. Simultaneously, I went into spider monkey mode in matters of support for my mother.

She is flying in next week for a medical consult, which we hope puts an end to the relentless paperwork generated by the original event at work which turned her life upside down. I am taking that day off to escort her to her crucial medical appointment and to provide what support I can give.

She has outlived several near death experiences associated with the original event. Her mind is sharp. Her ability to out wit problematic conditions inspires me and teaches me critical skills in how to solve problems and problem solve outcomes which have intended or unintended consequences.

I will savor our time together next week.

Sending lots of healing energy today,
:bouquet:

I'm back from my week+ in the land of weird. Surreal doesn't even to begin to describe some of what is going on, I'll have to come back over the next couple of days and vent a bit, I'm glad this thread is here, I'm gonna be a new regular.

Everyday seems to be a new test of how many hats can I wear at once. A sample day: waking up to discover my mother has decided the house should be 90 degrees : setting up the special hearing impaired phone that I ordered and had drop shipped only to discover she doesn't plan on using phones anymore ::blink:- touring two more nursing homes to make sure my father is in the best : finding more clothes for him and learning how to use the heat press in laundry for labeling : having my ass pleasantly kissed by a "wealth management" firm that is doing literally nothing for us (at $55k per year in fees just to be on 'standby') and assessing whether or not I'm up for this challenge myself : straight back over to the nursing home to work with PT on customizing a wheelchair : whisking mother to her Dr appointment where she forgot where she was or why only to have the Dr say she's fine to live by herself based on a questionnaire :blink: of course as we left she wanted to know who the nice man was :doh: : off to the accountant to sign papers that aren't ready : discovering the park brake on her car decided to seize in the parking lot >> REAALLY?? : get that towed and another car : to head back to the nursing home to learn about swallowing issues in stroke patients from the speech therapist : back to mothers house to put together a tv because hers has been broken for a month only to have her tell me she won't watch it even though she just asked me to "fix" (replace) it that morning. :blink:.................etc............etc........ ... Of course then she only sleeps about 4 hours a night because throughout the day she 'nods-off' every half hour and gets her sleep then, and when mother's awake...yep, the 90 degree thing.

I'm pretty sure there was more and that was only one day. After a week of those days I'm pretty much ready for the booby-hatch (her term) myself.

And of course at the end of all this the return 7 hour drive at the end where I come home to find the yard guy bailed again and I have no food. :blink:

Me tired... :thud:



Oh yeah, :cat: hates me for being gone.

I hear ya Kelt. Sorry things aren't going so smoothly trying to take care of your parents. If your mom is having issues with dementia a bit, have you thought about putting both your parents at the same facility? Often times they will allow married couples to move into a room together. Honestly, with your mom's issue with memory, I'd be afraid to leave her alone in the house, let alone drive a car to the store, something could happen to her, as I'm sure you are aware. I know it's difficult caring for parents, I care for my mom. She gets around really good on her own, but there are a lot of things she just can't do anymore and things I must do to help her. I handle everything from paperwork, to making her appts with doctors and taking her there, to making sure the house is repaired, the car is repaired, etc. Things I cannot do, I get someone else to fix them and have to contact my younger sister for financial help to get them repaired. My younger sister lives out of state in TN and wants my mom to move there with her so she's better cared for, but mom won't move there cause she don't like the hills and don't like the snow they get and blah blah blah whatever else excuse she can come up with. It's actually been a few yrs now that I've moved back here to help my mom. And it's cost me friendships and a love life as well because there aren't any gays here in redneckville small town in Tx. The few friends I do have all live in Austin or that area, so I don't see them hardly at all. I get lonely and bored here as I am disabled myself. I often wish my mom would move to TN to be with or nearer my younger sister so that I can have a life of my own and find a gf. I haven't had a partner in yrs now, long time. I'm ready for someone to be in my life though. I miss that part of my life. AS much as I love my mom, I want MY life back and let my younger sister who is married take care of mom and see how hard it is on me for while. She gets all snippity with me and acts like it's supposed to be easy to do but it isn't when mom yells and screams at me and acts like a child at times over stupid stuff and over her life being so hard. I have ptsd, anxiety, and severe depression and she affects me in a bad way when she acts like that. Drives me nuts. I've had to go back to therapy just to learn how to not let it get to me and cause me more issues with my own stuff. It's helped but I still get upset when it happens and takes me days to overcome the rattling it causes me.
I just wanted you to know, I understand what you're going through with the parents. Keep posting, someone is reading, I know I read often here and don't reply, but felt like I should with what you're dealing with. Keep on keeping on Kelt. Hang in there.

I have had a hand in caring for my parents and their issues the past few years. They are in their 70's and though they are still mobile and mostly can do for themselves they do depend on me to help them as needed.

Daddy has in the past 5 years had heart surgery, eyelid surgery, hernia surgery, and most recently cancer treatments. Mom does good at getting him to his appts but she wants me to go with them when he has to have things done at the VA in Charleston.

Moma has had surgery on her wrist and hand from a fall 10 years ago that she didn't have taken care of then. She is right handed and this has been a real challenge for her to learn to use her left. It's been quite a challenge to keep her happy and fed, as Daddy does nothing for her. It's hard juggling, work never knowing how many hours I will work or what time I will get off and their supper schedule between 5-6 and the other things she needs help with.

Thankfully my roomie has helped with getting them supper and helping Mom write out her bills and things like that. I know as the years move on they will require a lot more of my time. I know I am very fortunate that they can still do many things for themselves but I see those things dwindling a little at the time each year.

KUDO's to those of you taking care of parents and siblings it takes a lot out of you and from you, but I always think you are better for it in the end.

@ Kelt
 

My heart goes out to you.

After reading your post this morning on the way the 'Wealth Management' agents were fly-fishing your current situation, I couldn't help but think that your parents are so fortunate to have you handling and overseeing their care and managing their collective financial resources.

What you're going through is somewhat the proverbial mountain I will find myself scaling. My mother and I think quite a bit alike on most matters in life and unlike your situation, where I am presuming you are the sole child of your parents life, I am 2nd eldest in my parents' brood of children, with siblings that would not watch out for my mother's health and welfare. I'm the proverbial loaded shot-gun, my mother keeps by the 'door.' And my brothers and sister know this, as well as other certain people (doctors, wealth mgmt, etc) have come to realize, during the tiring process of staring down and eliminating threats or potential threats, that can and sometimes do, affect my mother's slice of life.

I hope you are able to cultivate and set aside time just to think, rest, and find solace out in nature, so that your mind and soul get the necessary reprieve to make the best decisions possible, each and every day, during this extremely challenging time.

Happy Sunday, Kelt.

:bouquet:

***Trigger Warning - Topics of emotional abuse, violence, and healing are below***

I was my mom's wild child. I am her youngest and the only one she raised until a teenager (this part is an super long story). I came back home when I was 28 and my son was four years old. I had no intention of sticking around that long. Well, 12 years later, here I sit. I have been to sole caretaker of my mother for the last four years. I have a brother (12 years older) and a sister (seven years older). Neither of which could take the time to come over and hang out with my mom, so I could take care of me. Neither of them seemed to care about what was happening with my mom. I would contact my brother, who only lives three miles from us, every time we ended up in the hospital. The response I often encountered was that it was my fault because I wasn't taking good enough care of her. He would yell at me and tear me apart. I endured this because he was her son, and I didn't want him to leave her, too. My sister left us ten years ago because of me, or so my mom says.

It seems that a lot of it is my fault, but I have done everything I could do that she would allow me to do. I tried to get her in home physical therapy, which she would kick out the physical therapist and never do any of the exercises. I tried to get a nurse to come over and be with her, so I could go just have a minute to breath. She would kick the nurse out, too, and I often found myself walking the people downstairs and apologizing profusely. She would yell at me that I don't need any time for me because she didn't take the time when she was raising me. I can only understand the frustration and fear my mom felt in marginal ways, but I tried to connect with her. I tried to make things better for her.

She has been in and out of nursing homes and the hospital, but this last jaunt into the hospital and the nursing home broke me. She has a history of leaving without doctor's consent, so when she called me two weeks ago to come and get her, I told her no. It broke my heart, and I sit here and cry now because of what has resulted from that one two lettered word. It was then that everything of the last fours years, honestly my whole life, came tumbling down out of my head and heart into my mouth. It was in those few minutes that everything I could never voice because I couldn't ever admit to myself was true. She threatened me through intimidation, "You better come get me." I still said no. She threatened me through guilt, "If you don't come get me, I'll call your brother!" I told her to go ahead and do that. Then she started to cry, "You don't love me." I said that I did and that is why I am saying no because I cannot take care of her the way she needs and that was me showing her that I loved her. She got angry again and told me that she was moving out. I said that is fine and that all of her things will be packed before she could get here. She hung up on me. I think I started to grieve then. I think in those quick moments I realized I just lost my mom because I figured it all out. I was the adult child of an emotional abuser, and I made the conscious choice to no longer be that child. I lost my will and desire to take care of her. I lost the guilt and shame of not being enough.

She called back later and tried to negotiate. She suggested that I move my son out of his room, so she could be in there. Before, she was in the living room. I laughed. I asked her who on earth asks their child to put them above his or her own child? She again got angry and hung up. It got to the point that I didn't want to answer my phone when she was calling. I felt like a horrible daughter and human being.

Two Fridays ago, I packed all of her things and she came with my brother and his wife to get them. It did not go well. My brother got violent with me and my son stepped in to defend me. My mom told me it was my fault that he put his hand on me.

It has been over a week since she has been gone. I have thoroughly cleaned the house, blessed it, but I still cry. I have missed worked and I keep looking for someone to tell me that I have been wrong in all of this because that is what my old tapes tell me I should be hearing. I wish I missed her. I feel bad for not feeling bad enough. I feel like a dick because I know that my life will better without all of the drama and heartache.

It's really good to have this thread here. Princessbelle, you are right I am doing everything myself, I don't have any family to help as an only child. Part of the weirdness is that my parents don't seem like family to me either. They pushed me away long ago as unacceptable. They are old people I know who have no one else. The phone call I got from my mother about this stroke was the first time she's called me in twenty-six years. I have seen them every few years and spoken briefly on the phone with them (my instigation) every few months, I don't really know why. My father has always been psychologically abusive to both my mother and me. I got out, and have always felt protective of her even though she chose to not interact with me lest it upset him.

It's a long complicated story that is probably just like a hundred others, so the details don't matter that much. I do need to hire others but right now in this initial period of what I have learned is the "Medicare 100" first days, it feels like I don't have time to find the right people to hire. I know it will work out in the long run, but it's crunch time. I think what I am doing would be classed as geriatric manager of some sort. My father also has cancer (he was taken off his coumadin (warfarin) for surgery and that's what stroked him out) so I am trying to set up a transition to Medicare hospice + gap insurance to cover medical expenses when the 100 days are over. Room and board will be self pay at around $9k per month.

I am taking time for myself, that's part of my one on; two off schedule. I'll burn out quick if I don't. I am taking food with me so that I will eat healthy and so will my mother by example and the fact she doesn't want to cook. I do the best I can to get sleep and have no plans to move anywhere. The weeks that I am home I am planning and working on this but at least I can concentrate and take breaks in the flow. I will make sure they are both safe and comfortable and that their assets are protected.

I came to realize a few years ago that with my father there would never be a reconciliation, nor a cathartic clash of titans, as it had been in my head for so long. It was deflating and also hurt but I got over it. I am now coming to realize that there will never be a hallmark relationship with my mother in the aftermath of his death. That is kind of sinking in now along with the fact that she simply doesn't care. It's too late, the woman I thought I knew so many years ago isn't really in there anymore.

I've offered my mother everything from occasional part time to full time live in help and she says it would be too invasive. Yet she seems amenable to looking at assisted living or an "independent-retirement" apartment with supplemental help. Go figure. I know she is in a strange place emotionally where she can't quite grieve her husband of 60 years because technically he isn't dead. I've suggested support groups for either caregivers or widows (to be?). She has been cut off and isolated for a long time, and hearing loss isn't helping. She is timid and well trained to not think of herself. I know she can't live alone and the reason I took her to a Dr for dementia evaluation was so that I could figure out if I should get her something in regular assisted living or if I should get her into something that could provide memory care. They seem to be divided and I don't want to set her up to be in a place where she might make friends only to have it taken away because that place may not "do" memory problems. I also understand that there are medications that can help if it's caught early.

For now I only leave her for two weeks and make sure she has a full tank of gas, food, and a bunch of cash if she needs anything. There isn't much else I can do other than work as fast as I can to get her in a better situation and my next trip over I am setting appointments for just that.

Oy vey. Ramble, ramble. I guess that's what this thread is for.

If anyone actually made it through this, congratulations! You have a longer attention span than I do, I've written this down over three sessions, lol. Here's your prize. :present:

:cheesy:

Kelt, I would suggest that you talk to those at the Assisted Living Place to see if your mother can actually function there with medications and if she cannot, will she have to move to a different facility? I live in an all adult retirement and disabled community for seniors, as I am young but disabled I am allowed to live here and it helps me afford a place to live. I had some problems with an elderly person and her dementia while living here and it became a nightmare for me to deal with. They ended up forcing the family to do something about it and moved her out because it started to cause problems with my own peace and tranquility the more the woman's disease progressed. I know it affects people differently, but I would suggest you speak to the Assisted Living Place before just placing her there. They may not be equipped to handle someone in her condition should her condition deteriorate more. I know there is medication she can take that may help, but is she willing to take it EVERYDAY? is the issue as well. The woman where I live wouldn't and she became aggressive and agitated more and more everyday, driving me nuts til they made her move out to a nursing home equipped to deal with her. It's not only your mom that you need to consider about where she lives, but others that may have to deal with her daily as well. Just something for you to think about.

For most of my adult life i took care of my folks financial and government paperwork, because one day they just looked at me and said " we don't get this anymore".

My mom fell one Christmas eve and broke her hip in the CVS parking lot, which required surgery and extensive rehab which required more decisions and every day visits and feeding my step-father. Then, my step-father became ill with kidney disease and heart disease...i took him to alll of his appointments including the appointments to put in his shunt for dialysis...then he had a massive heart attack, and my mom was forced to terminate life support.

My mom also had kidney disease which she told no one about, because if you don't think about it, it will all go away...until she wound up in the hospital with an emergncy shunt in her neck, and dialysis three times a week.

All of this occured as i began to become ill, and wound up with a triple by-pass! We began converting my mom's garage into a suite (she had a two bedroom house and we have a daughter) for my wife and i, and we moved in to care for my mom, who had quickly begun to go downhill...during all of this, my loving wife took care of both of us, got us moved, and began to work from
home.

My sister, ah my sister.

I think during the last 2 years of my Mom's life, my sister watched Mom for ONE DAY, and took her to dialysis ONE TIME when i had the flu. When she was in the hospital, full of fluid in her lungs and barely breathing (every couple of weeks) she took reports over the phone, and visited kind of hit and miss. Having a sibling certainly does not guarantee that you get support...something that was hard for me to take.

I worked full-time during all of this...my wife changed her schedule to work from home to make sure my Mom was safe and cared for...you know who suffered through all of this? My daughter! I had no time for my daughter, and for several years she was the one who got short changed the most.

I would gadly do it all again if it meant i had my mother back...but i have to say that was the most stress i have ever endured.

Do the best you can to take it one day at a time...and to just stop and breathe once in awhile.

Alzheimer medication helps my mom. If we had the funds I would have put her in a memory care home early. The best ones have so many stimulating activities and start at the low end of care to the end of the disease. There are many of them now. Starting early could make a difference.

This is a great list, thank you so much for posting it. I have used a few so far, and some of this will be size of town related (as I am finding) the aging catalog is quite good, though their local state office comes up a bit short. They live in a town of 75k so there is a lot less available than a city of a million.

I have spoken to both her Dr (little to no help) and also the social worker at the nursing home who has given me some contacts. Some of those have panned out and some haven't, I'm going to contact the social worker at the cancer treatment center my father was going to also. I do get a bit tangled up because, of course, nobody is available right now and I end up leaving messages all over town and am always doing something else when they call back. That just is what it is.

One thing I am specifically looking for right away is some sort of geriatric general MD for my mother. Sort of like a pediatrician only the other way 'round. It seems that it isn't really a popular specialty. At the nursing home there is a practice of four Drs that covers it and the other facilities and the social worker told me I could use them for my mother also. When I called them though it turns out they only see patients who are in a nursing facility and the umbrella group they are in only covers family practice and pediatricians. :confused:

I want to find a Dr for my mother who will take early stage dementia as a serious possibility (unlike her current Dr) and run some specific tests. It was other medical professionals who noticed her symptoms and told me about this. I have talked to her about it and she agrees that she wants to pursue it so that if there is a problem she can get medication, and if there isn't she will buckle down on making better lifestyle choices around food, sleep, etc, or we can put her somewhere that those things are monitored for her.

If anyone knows of a specific terminology I can search, or ideas of where I can find a geriatric MD, I'd be most appreciative.

Hey Kelt,
I use the Department of Aging and Disability Services for things I need help with for my mom such as assistance and referrals. Try googling that they may know of some doctors in your mom's area that specialize or treat dementia patients? Worth a shot.

Sorry you're having to end up doing so much leg work for a small town. i do it for my mom and the population there is less than 4,000. Yep it's not a typo. LOL I live in a smaller town just up the road from her and run myself ragged at times for her. But, I do what I must for my mom because she's the only mom I have and I love her.
We do what we know is right by our parents when we are able and can continue doing so. I reach my days at times with mom that I get so frustrated with her behavior towards me and her anger, that I just wanna walk away and tell my younger sister "she's all yours! I"M DONE" days. But I haven't .....YET.
Still hanging in there trying to do my duty as a daughter/son/butch/me for her.


Kelt, what town, state an county is this in? I wouldn't mind helping you google stuff to help you out to keep your head from spinning around so much if you need me to. PM me if you want to, I'm home all the time and can do that, I"m disabled myself.

Kelt,

Check and see if the area has a senior center, or if there is one in a larger town nearby...they will have a list of Doctors that specialize in geriatric care.

My folks have Medicare parts A and B, also D for prescriptions which are handled mail order by their medi-gap policy which is through Aetna.

I did just look up through the NAGCM to find Geriatric Care managers and they are all over 100 miles away, on the 'city' side of the mountains. I actually have a copy of a directory called innovAGING put together by one of these corps that run nursing homes (and I imagine many other related 'services') there is a lot of advertising but also some good numbers to chase. The company is Hyatt and they run two of the four nursing homes in the area including the one he is in. Anyone know them? Thumbs up or down?

Right now I'm in a little bit of hurry up and wait. I am booking appts for viewings at places for my mother and we will go to those on the next trip. There is only one 'campus' style CCCR in the area and we have been to it. She likes it a lot and so do I. It would have the advantage of letting her progress in one place, but it doesn't specialize in memory. This is the hard part, showing her things that she could get her heart set on and then maybe having to take it off the table later. I will slant things a bit toward memory places for the next visit.

Now that I've been to all four nursing home options I'm putting together an assessment to go over with my father. They have their pluses and minuses but are largely similar. I know he thinks there must be something nicer and cosmetically there is one that is newer, but the place I have him has a very good staff (others probably do too) and awards for their therapy. All of them allow us to fix up his room any way we want and I will ensure that where ever he is settled for 'long-term' will be nicer in terms of having his own things around him. I haven't gotten into that yet until I can make a determination if he will stay in this place or go to another.

Today was easy, only two urgent calls from the nursing home, one about a wheelchair and one about glasses. My mother of course involved in both. The social worker is being great about giving me a heads up so that I can jump in when needed. I can't get the last form I need for my own taxes, I fired the lawn guy, also known as landlord (that was tricky) and interviewed two new services for here. Tomorrow is a Dr consult for a surgery that looks like I won't be able to have recovery time for so I guess it's a good thing I don't have to have it immediately, and I'm working on the property title for the folks house. I got this. :blink:

Ah Ha! I hadn't thought of that one. I'm getting good info from you folks here and in pm's and rep, thank you all! Keep 'em comin'. :cheesy:

Kelt,

When you check out homes, check with your (the state it is in) licensing agency for their most recent facility review, which will give all violations and corrections made by the facility. It is public info, so you will not have trouble obtaining the reports in a timely manner. You can get the telephone number from the facility license which should be posted in plain sight.

Ask for a list of menus from past months, find out flexability of meals and special diets, staff to clent ratio, a list of the past month's activities...do they provide rides to shopping, doctor appointments etc.

Also, be careful when bringing personal belongings to the home...anything of value will disappear very quickly...tis the nature of the beast. Take pictures, affix permenant labels, engrave things like televisions with name or identifying info.

There are exceptional care facilities, and there are exceptionally BAD facilities...since you will not be around to do daily checks, look deeper than they want you to see. I ran care facilities as a certified administrator for 16 years, and the stories i could tell you!

Trigger warning: death and assisted death discussed
 

MsTinkerbelly, you are 100% right. Fortunately the facilities I've gone to seem to be eager to show off their reports and other awards for excellence for bragging rights.

We have been picking up menus and as I schedule the next round of places for my mother on the next trip I've been setting up lunch tours where we will look each place over and then go over the details while having lunch in the dining room with the residents.

The place where my father is also warned us about valuables and we are labeling everything. They gave us a lockbox for any valuables and I put his electric razor in it. Unfortunately, my mother only remembered to give it to him once in two weeks, so I just put in in a drawer where aides can give it to him and if it grows legs I'll just get him another.

So today has been going swimmingly, me making tons of calls and setting appts, making spreadsheets to compare everything (:cheesy: there's always a silver lining) and making several really good quality contacts. I found what I believe to be a really good hospice outfit and am setting up a sit down with the intake nurse for my next trip over so that I can get that into place when the Medicare 100 is over. So, I called the social worker to verify the quality of the hospice orginization and that they like to work with them and....

**** Trigger portion ****

Only one problem.

My father has quit participating in anything. Refusing to get out of bed, go to therapy, eat, anything. So when I called, she told me that they had a conference this morning about him and the Dr will see him tommorow morning. I was clear with my father about how this works: if he makes progress in any of the three therapy areas and participates, Medicare picks up the tab: if he doesn't, they won't.

So now, we are setting up a teleconference call "care conference" on Friday, with all departments and both my mother and father present. I have to figure out how to talk to a man who can't speak, on the phone, in a room full of people he isn't cooperating with, from several hundred miles away...

I, and they, believe he is trying to die. I don't blame him, I would too, this is his living nightmare. He lives in a state with "Death with Dignity" laws, but he has to be able to make verbal requests and self administer the drugs to carry it out.

I seriously don't know what the f*ck to do.

I already pulled the plug once. 6 weeks ago in the hospital they called it at 72 hours and with his medical directive against feeding tubes and DNR in place, signed him off to the 'end of days' type hospice and authorized the fluid IV to be pulled so he would die faster of dehydration. The next morning right before transport got there he woke up. Now here we are. I dunno. Now the only way this works for him is to die of starvation and that will probably break my mother.

Well, once again, thanks for listening.

Kelt, I honestly feel for you, your family and everything you are having to go through. Can your father communicate through writing at all since he cannot talk? What about a computer pushing the letters with an aid of some sort so he can type what he needs to say? I'm so sorry he's going through this and that your mom is as well and that you are all alone doing this yourself. If there is anything I can do for you, please let me know. I can lend an ear to listen if you wanna talk one on one. Just trying to offer you a friend if you need one to talk to.
I admire your strength, determination and endurance Kelt. It isn't easy doing what you are doing for your parents and being so far away. It isn't any easier being there with them either, can be more difficult dealing with all this close up first hand too. Keep on keeping on Kelt and hang in there .

It's a good idea, and I did try it. He reads and comprehends well so I took over a large printed alphabet and a pointing device. It turns out to be a one way street, he can get letters in but not out. I think he's short circuited. He can point a drawings that speech therapy gave him of "wheelchair", "bed", "lay down" in picture form. He indicated he wanted my pen and paper once and I gave them to him: it was total frustration for him and I'm not trained in how to do these things. I think over time he could re-learn some, but the cancer would get him before then.

Thanks for the ideas though. :)

Caregivers and stress
 

I have posted a few times about being a caregiver to my son with autism. A friend today pointed out just how much extra I do to keep my house running smooth. It made me think about my stress levels.

He is ten now.... and my son requires a few extra things at home.

We run a three part behavior program in our home that has to be monitored daily and weekly. He tracks his three chores each day which must be written on a board before he gets home from school so he can check them as soon as he walks in the door. For this he can earn up to $5 a week. He tracks his behavior at school, receiving a yes or no for morning preparations, behavior at school, and completion of homework each day. This requires an email to his teacher every day because he can not be trusted to bring a report home. If he earns 80% of these points he can have a Slurpee and a slice of pizza at 7-eleven on the way home. And we track "respect" at home. If he responds in appropriate respectful ways during his home time he receives 30 minutes a day of computer time on weekdays and 90 minutes on weekends. Disrespectful behaviors like yelling and refusals loose him 5 minutes at a time. More than 3 weekdays with lost time and he looses computer for the weekend.

These guidelines were developed with the help of every adult in his life including his therapist and have to be followed exactly. He has to get his allowance on time or he melts down. He has to get his pizza every Friday or he melts down. He can not do more than three chores or he melts down. Everything had to be carefully worded and explained. And then it took almost two months to get him to do the things we expected with regular success and minimal meltdowns.

We have to plan outings no less than two days in advance. Outings require drop bags that have meds, food, toys and electronics if they are going to be longer than one or two hours. Schedules have to be visually displayed in advance and must be followed. If a change is going to happen in the schedule or an outing is being canceled a rescheduling must immediately be presented, especially if the outing is desirable.

BUT, even with all of this, today I was reminded about the hardest part of taking care of my son. Its effect on my daughter. My son looks normal, he's smart, and he can out think you most of the time. He is physically capable of doing everything anyone else dose... but emotionally and mentally he just doesn't understand so many things. It's hard for my 12 year old daughter to understand why she is held to different expectations than her brother. Why she has more responsibility than him and why she feels like she has to "pick up the slack" so much of the time. I do the best I can to give her extra opportunity to do things she loves. Extra time with her friends, and outside of our home. But she's a caregiver too, and she doesn't even understand it yet.

That made me sad today.

This week, I have been to my mom's almost everyday so far for one reason or another. It's reminded me of just how much she needs me to remain here, no matter how bad I feel about my own life and all the loneliness I deal with being away from community of other lesbians and friends and even having a lover.
Today, I realized just how much my mom depends on me and it's been awhile for me to be able to see that because of all the tantrums shes thrown in the past. Today, I was exhausted and fell asleep for a nap and slept 4 hours. I reminded myself today that I have to take care of ME first in order to take care of mom. Today did a lot of realizing things that haven't been in the forefront of my mind.

I'm grateful for this thread. I'm grateful to know that there are others here that are also caretakers of their parents to remind me that I"m not alone in this.

So Today, I say Thank You, Thank you to all of you here that allow us to vent and converse back and forth. Thank you for understanding and having compassion.Thank you for being here for one another. Thank you my friends.

today my client wanted to go get a belt for her daughter in law

dilemma 1) daughter in law is in England,

dilemma 2) client cannot walk well, has lupus

so I called in advance to ask where I should park to have the least amount of walking (she doesn't have a wheelchair, just walker). I park where they indicate me to.... only to realize we are nowhere near the Coach store. so we leave the Macy's store that we were told to park at and then drive to the other side. we finally get to the correct store-- they don't sell womens belts in the store.

(I'm laughing at this point-- sod's law)

she then wants to try saks fifth. so we drive over. this time I go in to check it out first, so she doesn't have to walk unnecessarily. Nope, they stopped selling belts


"well, this was an excersize in futility" she said

I agree-- we should have known the moment we were told to park at the wrong place.



just another day in the world of caregiving.

Trigger Warning: Death and dying discussed
 

First up I just want to say that this thread is proving to be really good tool for decision making in that if I have to write things down in a way that explains it to a general someone else, I have to get it pretty clear in my own head first to do that. So, thanks folks.

I also have my best Bud of 38 years in my corner; he has been going through a lot of this with his mother for the last decade, she is 92 and his experiences are helping me see a bit further down the road than I otherwise could.

*****************

A new day, a new set of decisions. This is an update to this post.

Yesterday was a busy one. I spoke to the hospice intake nurse I had been setting an appointment with for when I would be there, and she drove over to the nursing facility to do and evaluation with my folks now rather than later. She had access to all of the medical records, spoke with the Dr on site and my father's previous GP. She spoke individually and together with both of my parents and then called me. After a lengthy discussion with the nurse, and then a long call with my mother in the evening, I have decided what's next.

I'm going to have my father re-catagorized from a rehab patient to a hospice "Comfort Care Only" patient. I will have Medicare stop paying for room and board, my mother will start being responsible for that portion of it. (Read: I will sort out her income and set up a financial plan on my next trip and hand her the checkbook and tell her what to write and to whom. No responsibility there. :blink:) Hospice will begin billing Medicare for their services and we (mother) will pick up any financial overruns with me in the audit seat.

He qualifies for hospice with his stroke related issues so I don't have to run around getting the cancer angle worked out which is a big relief to me. He will be offered pretty much whatever he wants without any pressure to do anything that would make him uncomfortable or cause duress. With his physicians directive and DNR in place, we will let nature take it's course without alteration. He has made it clear to everyone involved that this is his choice and preference. I will call the director of the facility today to see if this can be done without the conference call.

I will make this as seamless as possible for my mother, although that may be tricky. She is completely overwhelmed by paperwork and jargon, she doesn't understand it. When we signed him in, I was her effective proxy. It was as my Buddy described; the facility was so relieved to see an adult child arrive that they worked almost exclusively with me. They had one simple form for my mother to sign reassigning her signature to me as a "family Representative" and another for me stating my roll as representative and releasing me from any financial culpability as her proxy. It worked well because I was there in person. I hope to delay paperwork until I get there but have prepped my mother that she may have to sign some things she doesn't understand (something she has never done) and I will have to guide her on the phone as it happens.

It feels right and I am glad to have something going into place that makes sense for the situation. I speak only from my family's position as atheists and right to die proponents. This set of decisions is obviously not mainstream, but it works for us.

Thanks for listening, I'll be back with and update to my whole 'decisions about mother' later.

*****************

I found what I think is a good resource, especially for my mother, but also myself, in learning what to expect, and what some good questions to ask are regardless of a persons beliefs around death. An NIH booklet titled "End of Life: Helping with Comfort and Care" I would recommend it to anyone dealing with a situation that may end in death as general good information.

Kelt, ** trigger warning** death and dying

When my Mom got to the point of pain and no hope, my sister and i were asked by the hospital hospice team to talk with her about her options. Mom was on dialysis, was about to lose both feet, and had a stomach infection eating her alive. I should back up a bit and tell you that when they wanted to have a hospice meeting, neither one of us thought death and dying, we thought care plan for the future! Soooo, needless to say we were crushed!

Mom chose to stay in the hospital hospice, and to terminate dialysis; she lasted 1 week before she died. I stayed with her for the entire week...my wife brought me clothes and i used her shower. It was the most difficult thing i have ever done in my life.

As a Christian and a proponent of assisted suicide, i agree with your decision 100% (not that you need my validation), and as i read your post yesterday re your father's condition my mind went to the memory of the peace my mother's decision gave her, and hoped you would find a way for your father to retain his dignity, and you your sanity.

I wish you strength during this time Kelt.:bunchflowers:

Possibly Triggery: death and dying.
 

Kelt,
My father also decided to do hospice and stop all care for his heart, have his pacemaker shut off because his kidneys were failing, he was diabetic, had had more than 2 heart attacks after having had 3 recent foot removal operations, and he just couldn't do it anymore. He was ready to die, had made peace with it, decided on his own that he wanted to do hospice in a nursing home setting in his own room. I stayed with my father overnights, switching out evenings with my half sister his other daughter and my half brother his son, in evenings after his work. My father made peace with everyone he felt he needed to including my mother and I. I was with my father overnight the evening he passed away, my brother had just left to go home when I had to call him on his cell to have him come back. My father passed a week after being put into hospice, on July 20th,2014. I understand what you're about to go through and I hope your father's decision gives him peace within as it did mine, and I wish you and your mother peace during your time of need.

Hugs to you and what you've been through, are going through and will go through in the future. I commend you for taking care of your mom and I too am here to read, listen, talk to, converse with, etc etc etc. I am one the "we's" Princess mentioned, as are others in this thread I'm sure. We're all going through different things at different times and we've all made sacrifices to a degree or will make them in the future. Be PROUD OF YOU. I am.
I'm around most of the time if you ever need to just vent or talk or discuss. I check in often, I don't work , I'm disabled but if you need me ever, I"m there. It's tough I know, I go to therapy to deal with my own issues as well as dealing with my mom and how she handles her behavior with me. It's stressful often and drives me nuts to the point that sometimes I want to quit, but I DON'T. I won't. I can't. She's my mom and she needs me just like all of our parents need us to be there for them. So hold your head up HIGH , SMILE when you look in the mirror each day, KNOW that you are doing the right things within yourself, even when things get so difficult you feel like tossing in the towel and don't, you keep going. Just don't forget to take care of YOU in the mean time. YOU come first so that you can do for mom.

This thread popped up on the front page and is so timely right now.

I thought I would be a lot older when my parents started having severe health issues and I was put into the role of caregiver (even on a semi basis).

I've talked openly about my Pops and his struggle with Cancer, the VA healthy system, and my role in his care. I have found myself frustrated, sad, angry, and mentally exhausted at different times during the journey of his care and hospital visits and stays. I've looked around online for support and it has helped some to know other people go through all of the emotions too.

At this point, my Pops is Cancer-free and can lead a normal life but basically has regressed from a man who used to never want anyone to do anything for him because he "could do it himself" to this person who expects me to do *everything* for him. Anything from calling a cable company for him to doing his taxes. He is capable of doing these things but it's almost like he got comfortable with not having to handle anything. Needless to say, we've had to have conversations about how he has got to step back up and handle certain things in his life because I am working full-time and still going to school full-time and can't take on some of that stuff.

It's tough and worth it but there are days when I am emotionally tired.

Ok, I'm tired today. I've been running all week back and forth to take care of things for mom, both my aunt and my uncle and back and forth we went. Today I had to go replace the fuel pressure regulator on mom's car(leaking gas), so had to take the car to my uncle's house to borrow tools to do that. FIXED THAT.I'm still waiting on the AC control panel to come in the mail form my sister, so I can go replace that too. Next thing I've been doing is working on my aunt's issue all week with her high cost of medicare part B drug copay deductible. There just doesn't seem to be any help out there for her in our county. I've exhausted all avenues to no avail.And state issued Medicaid does NOT cover prescriptions, talked with the state medicaid OMBUDSMAN directly in Austin over medicaid about it. So, whenever my aunt and uncle need help with things such as medicare issues, medicare state paid premiums, paperwork, etc, I am their go to gal. I've also been dealing with a long term issue to resolve their telephone constantly going out on them after it rains. I've spoken to so many supervisors, my head hurts. Hopefully it will get resolved and soon as they are both medical patients with either Heart or Copd issues, so they have to have a working phone at all times. This is my mom's brother and sister-in-law, they are all up in age here around me, and all younger than my mom, late 60's to early 70's with my mom at 73, they stair step in ages. I also get calls from her other younger brother to do computer stuff for him or fix their computer issues for them, or order parts online etc etc etc. Which I just fixed their computer the day before yesterday. So, all I've been doing all week long is doing for others. The rest of today, I'm not going to do anymore if I can help it. I need time for me to recoup my brains and mental and physical exhaustion from all the things this week.

I hope the rest of you are getting needed rest as well. Have a good weekend, all of you.