Caregivers and Stress

[TruTexan]

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.

[MsTinkerbelly]

Originally Posted by Kelt

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.

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.

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.

[Kelt]

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.

[Kelt]

Originally Posted by MsTinkerbelly

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.

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'.

[MsTinkerbelly]

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!

[Kelt]

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 ( 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.

[TruTexan]

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 .

[Kelt]

Originally Posted by TruTexan

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.

[afrcnqueen]

I can so identify with everyone who has posted in this thread in some form or other. I am a caregiver for my mother who is a young 65. I've been taking care or assisting her in some manner on and off for the past 15 years. With me flying back and forth from California for one reason or another. How long I stayed depended on my work, her health (meaning how bad a shape she was in) if I were single or in a relationship.
I left a gf once to come take care of my mother when she was in the hospital for gun shot wounds caused by a family friend. Needless to say he is no longer a friend of the family and said man has since passed away.
I spent that time with my mother for 2 years getting her back to her health or at least where she wasn't dependent on anyone including me. Then gf and I obviously broke up, she wasn't going to move back home with me and she started seeing someone else when I couldn't give her a time frame of when I would be back with her and resume our lives....fast forward to 2010....

I was living in Cali recently single and living my life and enjoying my job and friends. Phone call comes in...my mother isn't doing well I might have to come home for a bit. A bit is still today. This is a woman who was knocking on death's door when I came into town so I didn't think she would last long.
She has been diagnosed with breast cancer 2x the most recent was stage IV currently in remission by the way. She had a heart valve replaced ten years ago and is on Coumadin to prevent blood clots. She is diabetic and currently going through a myriad of complications, she just had a toe amputated 2 weeks or so ago and now they are possibly talking more amputations. The past year she has been in/out of the hospital about a dozen times ( I lost count). From the 3 gun shot wounds she developed other complications over the years including very little use of her left arm because her left elbow was shattered and the prosthetic got infected and had to be taken out.
I know all the nurses by name and face and doctors. I know the hospital in and out like the back of my hand.

I had an aunt who came to visit not too long ago to 'help me' and let me get some time to myself and just be. Well....she ended up needing emergency surgery cause her appendix ruptured so she was no good for about two weeks. I played nurse now to two sick people taking turns going in/out of the hospital. Not even 2 weeks after my aunt's appendicitis she needed gall bladder surgery. Oh. My. God!! Can we say what the eff!?!?!
So I did what I had to do. Aunt has recovered and is well on her way home now.
Mom had been in a rehab facility the past two weeks recovering from the amputation. That wasn't going so well because each day she was in pain and was progressively getting worse. Turns out it is infected!! Guess what, she is back in the hospital for god knows how long. They will probably amputated the other toes while she is in there right now.

Did I mention that I am an only child? That I work and have been working full time since I moved back in 2010. I ran mom to all her doctors appts, surgeries, physical therapies, picked up prescriptions, took care of the house and anything else that needed to be done. Oh and communicated with the rest of the family who are in South Africa about what is going on and how she is coming along.
Some of mom's friends helped as much as they could. But all of them work and have families and their own stuff to take care of. So everything else fell on me. I Love my mother and she was and is my responsibility to take care of.

In the almost 5 yrs since I moved back and started taking care of her. I forgot about me and my needs. She became my priority, my every waking thought and every spare moment I had. when I wasn't at work or sleeping that is.
I know about Stress! I know about being tired. I know about going through the motions and running on automatic pilot. I know about neglecting your own happiness and health to care for someone else. I know about forgetting what it's like to be free of responsibility. I know what it feels like to go through your own aches, pains, sadness, loneliness, fears, anger, guilt, resentment, frustration and anything else you can think of alone. I know what it's like to be involved in a relationship and not be able to make them a priority or run off to go see them. I know what its like to go out for dinner with friends and be mentally occupied by the 'what if i'm not there and something happens?' so you leave early. In a nutshell, I know what its like to drown while awake.
I'm am physically, emotionally and spiritually empty. I have no empathy or sympathy for anyone at the moment. I am angry, tired, empty and just plain sad. It is just recently, that after a long time of carrying it all on my shoulders that a very special person 'suggested' some types of government programs offered by the state and the hospital I am taking advantage of. I am also seeing a therapist. I am right now dealing with the health issues of my own that have risen and I neglected to address.

My head is at least above water. I still cry and not sleep well but I put one foot in front of the other and continue. I crash and fall apart, but what's important is that I get up even when it takes everything I have left for me to do it. I will get through it. And so will all of you who are caregivers and caretakers and partners and friends and family and parents or children.

Thanks for listening *s

[JustLovelyJenn]

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.

[TruTexan]

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.

[Cailin]

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.

[Kelt]

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. ) 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.

[MsTinkerbelly]

Originally Posted by Kelt

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. ) 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.

[TruTexan]

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.

[princessbelle]

Originally Posted by afrcnqueen

I can so identify with everyone who has posted in this thread in some form or other. I am a caregiver for my mother who is a young 65. I've been taking care or assisting her in some manner on and off for the past 15 years. With me flying back and forth from California for one reason or another. How long I stayed depended on my work, her health (meaning how bad a shape she was in) if I were single or in a relationship.
I left a gf once to come take care of my mother when she was in the hospital for gun shot wounds caused by a family friend. Needless to say he is no longer a friend of the family and said man has since passed away.
I spent that time with my mother for 2 years getting her back to her health or at least where she wasn't dependent on anyone including me. Then gf and I obviously broke up, she wasn't going to move back home with me and she started seeing someone else when I couldn't give her a time frame of when I would be back with her and resume our lives....fast forward to 2010....

I was living in Cali recently single and living my life and enjoying my job and friends. Phone call comes in...my mother isn't doing well I might have to come home for a bit. A bit is still today. This is a woman who was knocking on death's door when I came into town so I didn't think she would last long.
She has been diagnosed with breast cancer 2x the most recent was stage IV currently in remission by the way. She had a heart valve replaced ten years ago and is on Coumadin to prevent blood clots. She is diabetic and currently going through a myriad of complications, she just had a toe amputated 2 weeks or so ago and now they are possibly talking more amputations. The past year she has been in/out of the hospital about a dozen times ( I lost count). From the 3 gun shot wounds she developed other complications over the years including very little use of her left arm because her left elbow was shattered and the prosthetic got infected and had to be taken out.
I know all the nurses by name and face and doctors. I know the hospital in and out like the back of my hand.

I had an aunt who came to visit not too long ago to 'help me' and let me get some time to myself and just be. Well....she ended up needing emergency surgery cause her appendix ruptured so she was no good for about two weeks. I played nurse now to two sick people taking turns going in/out of the hospital. Not even 2 weeks after my aunt's appendicitis she needed gall bladder surgery. Oh. My. God!! Can we say what the eff!?!?!
So I did what I had to do. Aunt has recovered and is well on her way home now.
Mom had been in a rehab facility the past two weeks recovering from the amputation. That wasn't going so well because each day she was in pain and was progressively getting worse. Turns out it is infected!! Guess what, she is back in the hospital for god knows how long. They will probably amputated the other toes while she is in there right now.

Did I mention that I am an only child? That I work and have been working full time since I moved back in 2010. I ran mom to all her doctors appts, surgeries, physical therapies, picked up prescriptions, took care of the house and anything else that needed to be done. Oh and communicated with the rest of the family who are in South Africa about what is going on and how she is coming along.
Some of mom's friends helped as much as they could. But all of them work and have families and their own stuff to take care of. So everything else fell on me. I Love my mother and she was and is my responsibility to take care of.

In the almost 5 yrs since I moved back and started taking care of her. I forgot about me and my needs. She became my priority, my every waking thought and every spare moment I had. when I wasn't at work or sleeping that is.
I know about Stress! I know about being tired. I know about going through the motions and running on automatic pilot. I know about neglecting your own happiness and health to care for someone else. I know about forgetting what it's like to be free of responsibility. I know what it feels like to go through your own aches, pains, sadness, loneliness, fears, anger, guilt, resentment, frustration and anything else you can think of alone. I know what it's like to be involved in a relationship and not be able to make them a priority or run off to go see them. I know what its like to go out for dinner with friends and be mentally occupied by the 'what if i'm not there and something happens?' so you leave early. In a nutshell, I know what its like to drown while awake.
I'm am physically, emotionally and spiritually empty. I have no empathy or sympathy for anyone at the moment. I am angry, tired, empty and just plain sad. It is just recently, that after a long time of carrying it all on my shoulders that a very special person 'suggested' some types of government programs offered by the state and the hospital I am taking advantage of. I am also seeing a therapist. I am right now dealing with the health issues of my own that have risen and I neglected to address.

My head is at least above water. I still cry and not sleep well but I put one foot in front of the other and continue. I crash and fall apart, but what's important is that I get up even when it takes everything I have left for me to do it. I will get through it. And so will all of you who are caregivers and caretakers and partners and friends and family and parents or children.

Thanks for listening *s

You are going through so much i don't even know where to start your hugs at. It sounds like you may be getting some help at this point and it sure sounds like you need it.

I've said this before but sometimes it's just knowing who to reach out to so that we can get some support. Once that door opens, then other doors seem to open. I know you are overwhelmed, tired, frustrated and at wits end, but i hope you also are proud of yourself. I'm proud of you. Just reading everything you've done for your mom, your aunt, keeping your family updated and so on, i am VERY proud of you and can tell you are someone that does not take family lightly or for granted. Your mom is lucky you are her daughter.

Hang in there. Therapy is a GREAT idea. Talk to friends, family, here on this thread, talk to anyone that will listen. I will listen!!! "WE" will listen!!!!

Hold that head high. You WILL get through this!!!!

[TruTexan]

Originally Posted by afrcnqueen

I can so identify with everyone who has posted in this thread in some form or other. I am a caregiver for my mother who is a young 65. I've been taking care or assisting her in some manner on and off for the past 15 years. With me flying back and forth from California for one reason or another. How long I stayed depended on my work, her health (meaning how bad a shape she was in) if I were single or in a relationship.
I left a gf once to come take care of my mother when she was in the hospital for gun shot wounds caused by a family friend. Needless to say he is no longer a friend of the family and said man has since passed away.
I spent that time with my mother for 2 years getting her back to her health or at least where she wasn't dependent on anyone including me. Then gf and I obviously broke up, she wasn't going to move back home with me and she started seeing someone else when I couldn't give her a time frame of when I would be back with her and resume our lives....fast forward to 2010....

I was living in Cali recently single and living my life and enjoying my job and friends. Phone call comes in...my mother isn't doing well I might have to come home for a bit. A bit is still today. This is a woman who was knocking on death's door when I came into town so I didn't think she would last long.
She has been diagnosed with breast cancer 2x the most recent was stage IV currently in remission by the way. She had a heart valve replaced ten years ago and is on Coumadin to prevent blood clots. She is diabetic and currently going through a myriad of complications, she just had a toe amputated 2 weeks or so ago and now they are possibly talking more amputations. The past year she has been in/out of the hospital about a dozen times ( I lost count). From the 3 gun shot wounds she developed other complications over the years including very little use of her left arm because her left elbow was shattered and the prosthetic got infected and had to be taken out.
I know all the nurses by name and face and doctors. I know the hospital in and out like the back of my hand.

I had an aunt who came to visit not too long ago to 'help me' and let me get some time to myself and just be. Well....she ended up needing emergency surgery cause her appendix ruptured so she was no good for about two weeks. I played nurse now to two sick people taking turns going in/out of the hospital. Not even 2 weeks after my aunt's appendicitis she needed gall bladder surgery. Oh. My. God!! Can we say what the eff!?!?!
So I did what I had to do. Aunt has recovered and is well on her way home now.
Mom had been in a rehab facility the past two weeks recovering from the amputation. That wasn't going so well because each day she was in pain and was progressively getting worse. Turns out it is infected!! Guess what, she is back in the hospital for god knows how long. They will probably amputated the other toes while she is in there right now.

Did I mention that I am an only child? That I work and have been working full time since I moved back in 2010. I ran mom to all her doctors appts, surgeries, physical therapies, picked up prescriptions, took care of the house and anything else that needed to be done. Oh and communicated with the rest of the family who are in South Africa about what is going on and how she is coming along.
Some of mom's friends helped as much as they could. But all of them work and have families and their own stuff to take care of. So everything else fell on me. I Love my mother and she was and is my responsibility to take care of.

In the almost 5 yrs since I moved back and started taking care of her. I forgot about me and my needs. She became my priority, my every waking thought and every spare moment I had. when I wasn't at work or sleeping that is.
I know about Stress! I know about being tired. I know about going through the motions and running on automatic pilot. I know about neglecting your own happiness and health to care for someone else. I know about forgetting what it's like to be free of responsibility. I know what it feels like to go through your own aches, pains, sadness, loneliness, fears, anger, guilt, resentment, frustration and anything else you can think of alone. I know what it's like to be involved in a relationship and not be able to make them a priority or run off to go see them. I know what its like to go out for dinner with friends and be mentally occupied by the 'what if i'm not there and something happens?' so you leave early. In a nutshell, I know what its like to drown while awake.
I'm am physically, emotionally and spiritually empty. I have no empathy or sympathy for anyone at the moment. I am angry, tired, empty and just plain sad. It is just recently, that after a long time of carrying it all on my shoulders that a very special person 'suggested' some types of government programs offered by the state and the hospital I am taking advantage of. I am also seeing a therapist. I am right now dealing with the health issues of my own that have risen and I neglected to address.

My head is at least above water. I still cry and not sleep well but I put one foot in front of the other and continue. I crash and fall apart, but what's important is that I get up even when it takes everything I have left for me to do it. I will get through it. And so will all of you who are caregivers and caretakers and partners and friends and family and parents or children.

Thanks for listening *s

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.

[Medusa]

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.

[TruTexan]

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.

[afrcnqueen]

Thank you princess belle and Tru for all your kind words and support. It does help to know that I am not alone in this. I also want to say Hugs to everyone on this thread who is and has taken the role of being a caregiver. It is a difficult task but we do must be done for those we love. My thoughts and prayers are with you all. Please take care of yourselves and I will do the same.