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Whom Are We Caregivers For?
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Whom Are We Caregivers For?

There is not a lot of activity on our Caregivers Forum. Maybe it's because we have not been "found." Maybe it's because we are so busy care-giving we don't have time to post. Whatever the reason I hope we can raise some interest and activity in our community. This forum is designed to provide support and information for all Caregivers Let's see if we can do just that.

So here's a poll. I hope you will find the time to participate.

I care for my terminally ill 81 year old father. I also provide care for my 77 year old mother 50-60% of the time.  Who do you care for?

Warm Wishes,
Tuck
37%
 (3) 
Parent
0%
 (0) 
Sibling
12%
 (1) 
Child
0%
 (0) 
Grandparent
50%
 (4) 
Other (Please explain)
8 Members voted
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42 Comments Post a Comment
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Hi, my Mom and brother are in longterm care, I visit them alot.  My Mom is 87, and brother had 3 strokes.  I have a sister that was brain damaged at birth, which I am guardian of.  This on top of fighting depression for quite a while.  
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Thank you for taking the time to post. You certainly have your hands full. My heart goes out to you.

I hope that your brother and mom are in the same facility. Or do you have to go to two different ones to visit them?

As you may know I am the caregiver for my father in my home. I also deal with chronic pain and am disabled making caring for him even a greater challenge. He's a great man but I fear I am reaching the end of my limitations and ability to care for him. Thus far I have been unable to "give up" and place him in an alternative living situation.

Again thanks for sharing.
Tuck
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I currently care for a client who has had alzheimer's for 10 years.  I am a professional caregiver/CNA.
D.
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Weclome. CNA's are Jewels. Your work is so important. I was a CNA before I went to Nursing School. It was very rewarding. If you have been doing it for ten years you must be dedicated.

My father has a CNA through Hospice that comes in twice a week. She has become part of our family. We all love her. Thank you for all you do.

Tuck
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:-))  Thank you for your kind words.  I have been up against the "negativity" that surrounds CNA's that they do the "grunt" work...but you know....I don't mind.  I believe in what I do.  I actually wanted to be a  nurse, many, many years ago before I had my daughter, who later we found out was on the autism spectrum.  

I started the biology classes, chemistry, etc. and ended up with a pituitary tumor during that time...lol!  That changed my path.  However, all these years later, I still had the interest in caring for people, so I started with caregiving after my oldest was nearly finished with high school.

Like garbage collectors, etc...society would come to a halt if no one did the work.  CNA's are on the front line whether in a facility or nursing home, CBRF, RCAC, or in home care.  You are a gem :-))))
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I have posted before i take care of my spose who has cancer and is on oxygen and does not walk have for 10 years  jo
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i agree few people post here, also they do not ans the ones that post on senior health  jo not to many people pay much attention to the seniors any more  jo
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Dazon,

CNA's are the heartbeat of patient care. They notice if someone has a skin problem, they never scold when a a patient has an "accident," they help with meals and nourishment's, make beds and assist with general hygiene and more more things that are too numerous to mention. How would a facility every operate successfully without you? And more importantly how would patients? Your intervention spots issues before they become a problem.

In a long term facility you often become many a patent's family. You provide hugs, love and laughter that their families often can't or won't.

I'll never forget a very sad Christmas Day for me. I was a CNA, a single Mom. I had 2 very little boys that had to spend X-mas Eve and Christmas Day with my mom because I had to work. I went to work that Christmas Morning with tears in my eyes.  A grumpy elderly male patient that liked no one and was almost impossible to please, saw my tears. Mr X was often mean-mouthed and demanding. He never had visitors and no one could reach him. He asked why I was crying. I reluctantly told him, "Because I spent Christmas Eve alone and with out my sons and I'll spend Christmas Day without them too."  To my surprise he hugged me and with tears in his eyes he said, "We'll spend Christmas together. I've been alone for twenty years. My son is dead."  We smiled and cried together, holding on to one another like we were long lost friends. I spent every spare moment with him that day. Sometimes just popping my head in his door to say hello. I became his friend, his only friend. That's what CNA's do.

Granted, nurses make more money but their jobs are no more or less important than a CNA's. I would have remained a CNA had I not required more income to raise my sons. I received Zero dollars in child support.

We need more great CNAs like you so don't ever think you are not very important and very appreciated.

~Tuck~  
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I agree with you. Our society places great empathize of youth, wealthy and beauty. Seniors are often forgotten.....or at least it appears that way. Unless you are active and productive your opinion or needs do not seem to be very important or in some instances they just don't count.

Other societies equate age with wisdom and seniors are honored. Today in the USA if you are beautiful in a swimsuit or great on the stock market you are honored.

I beleive the Baby Boomer Generation is changing the picture to some degree, as they changed so many things in our country and aboard.

Bless you for caring for a disabled husband for so many years. I know the challenges are many and it's never easy. I care for my elderly father and many times I don't even know the date. Day's become a blur of meeting his needs and trying to manage my chronic pain. I have no other life. I am sure you can relate.

I find it helps to shat with others that know what I am experiencing. I hope you will be more active on the forum. Maybe together we can raise some support and activity.

(((HUGS))) to You,
   Tuck  
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Caregiver for my husband -- and losing my mind, if anybody is interested. One cannot keep her "mind" if she is never allowed to sleep nor ever allowed even a little bitty five minute "quiet time" during any day. Why do they become so babyish and 100 percent self-centered? I think it's the drugs. Doctors dope them up to try to make them stop complaining, and then send them home to the wife to deal with. My problem, I guess, is that I am apparently the only human left on the planet who is not taking drugs. I cannot find quiet time anywhere. For example, last week I cheated and left for my dentist appointment early just so I could sit in the waiting room and sit quietly and look at a magazine ... without anybody yelling in my ear and complaining, complaining, complaining. So what happens? Some other wife's patient high on prescription "Yakky Drugs" comes in and sits down next to me, another old Chatty Charlie high on prescription drugs, talk talk talk talk, yelling loudly in my ear, bragging and repeating himself ... just like at home! I started crying and everybody thought it was because I was afraid of the dental pain, but what I really wanted was for them to take me in for treatment and just don't talk, I can stand any pain if only the incessant loud repetitive talking will stop for five minutes  ...
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Lynne,

I am so very sorry to hear that you are so alone in your caregiving. I DO understand. Although my father is not talking incessantly he often is angry and blaming me. I do not have a minutes peace.

Everything that goes wrong can be my fault on any given day. Although I admit that his health has declined to the point that he is often unable to even be angry.  His mind no longer functions clearly and often he is child-like. He is still able to be angry and still able to attempt to drag me onto arguments about anything. I refuse to argue with him. It is fruitless.

Dad has been with us for seven years. His health has declined with every year and I have gradually given up my life to care for him. Now he is terminal and it breaks my heart. However that doesn't deter my need for rest, privacy, time to myself, time for my friends, time for my grown children or any of those things that others so often take for granted.

I do understand you need for some peace and quiet and my heart goes out to you. This non-crier is now easily driven to tears. Do you have any outside support? I am blessed to finally have the support of Hospice but even that is not enough.

You do need support also and precious time for yourself. Are there any support system in your area?  Volunteers? may I ask what is your husband;s diagnosis?

~Tuck~
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My husband has heart problems and COPD and other ailments, all of them legitimate serious problems. I am wholly sympathetic about that, and very kind to him, and do everything I can for him. But ... he is not always in a "bad way" and he can/could still do many things. Just not as easy or as fast or as painlessly as he used to. The problem is that he is not coping with growing older, he is furious that he can't drink and smoke and eat anything he wants, etc. etc. He is furious about the aches and pains and restrictions. Worse, once a man has had a heart attack, every twinge of indigestion is indistinguishable from another heart attack, and panic sets in.

All ER visits are at 2am, never when the caregiver is actually awake and dressed.

We do have some "good" days, though.  I have bursts of self-pity when we have gone through extended periods of the bad days. This time, it started just before Christmas and is still going on.  Cold or wet weather brings it on with him because he can't work outside and he refuses to anticipate this and come up with alternate interesting activities. When he hangs around the house complaining and making himself sick and depressed, I go insane tripping over him, from the frustration of never being able to complete any chore, much less have any private "happy" time with any personal interests; heck not even a complete thought to myself because the noise never stops. (The compulsive talking comes from drugs that I deem inappropriate therapy.)  I call this Retired Husband Syndrome, more than any physical illness. My mother went through it with my dad -- she signed him up to volunteer at the hospital the day he started supervising her cleaning the toilet and questioning her lifelong method of loading laundry into the dryer ...

I gave up working when my husband retired, because the first thing he did was have a heart attack (plus, he was wrecking the house being home alone, I would come home and burst into tears upon viewing the utter destruction). And since I am "not working," I guess he decided I am now his personal assistant 24/7. So yes, I consider myself his "caregiver."   Occasionally I read him the riot act -- like yesterday afternoon -- but that takes a lot out of me to cry and yell and slam doors, and it isn't my real personality. It works, though -- today he is acting all mature and independent and cheerful. That could just be because it is a nice spring-like day, though ...

I have an objection about treating Retired Husband Syndrome with drugs, which is what doctors always want to do. Great, now he has a Xanax or Prozac addiction in addition to Retired Husband Syndrome, thanks Doc! Can he come live with YOU?  My suggestion is Mandatory Daycare upon retirement, but nobody will listen to me.

My one request to family members and friends who want to be helpful to a caregiver:  Take the patient out of the house on some regular, predictable schedule.  Pick him up at the front door and don't bring him back until the promised time. The caregiver wants to vacuum in front of the patient's sofa or recliner and air the place out, and have some quiet time to herself. So do not insist that the caregiver come along on your outing -- that defeats the purpose. For goodness sake, don't bring yourself and your closest 10 friends and their children and pets along for a "visit" at the patient's house. The caregiver will shoot herself because now she has 20 additional warm bodies to wait on and hear complaints from ... how cruel can you be?

Thanks for this forum, it really does help to gripe a little in a place the patient won't see, and provide empathy for others in the same situation.

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Hi all, glad that we are all in the same boat!  Which sometimes seems sunk!
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Lynne,

Sorry but I couldn't help but chuckle..."Retired Husband's Syndrome" at first. But now I am really scared!!! I am my father's caretaker,,,,but my husband, eleven years my senior will retire in 12 days.

He is already down to four, sometimes three days a week and I am noticing the very things you are talking about. Yes I need help with my father and heavy things around the house but when did the kitchen become my husband's domain? A galley kitchen at that!!!

He is now trying "new" recipes. When I cook (90% of the time) he sets timers and questions my seasonings....not to learn mind you...to supervisor!!!  He decides what's for supper. If this gets worse I will lose it with the pressures of caring for a terminal father and a man in "Retired Husband Syndrome."

And you know I never thought this would happen. I've looked forward to retirement with him. We owned our own business and worked together for ten years. We did very well together. We sold the business and continued our personal careers. We were/are both upper management (I'm recently disabled). It's like he has come home to be the VP of the house instead of VP of the company.

His 148 IQ needs more than recipes but I can't get him interested in anything else. After reading your post Lynne I am more concerned what full time retirement will bring. I'll go nuts for sure. Lord help me!!!  

And yes Kobuk, we are all in the same boat. It's good to know there are others that understand what we are going through!! I sure appreciate all of you.

~Tuck~
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I am very sorry to be the one to tell you that you are in for big trouble. No matter how nice he was before he retired, and no matter how he treated you as an equal partner all these years ... he will change and become Boss of the House. And for some unfathomable reason, this big strong super-intelligent man will regress to a two-year old mentalilty and become utterly inept. It is so sad.

You will not be able to ever ask for help with anything because "help" would mean that the "helper" do what the "help needer" asks, and he cannot do that -- he is The Boss. Instead of just doing what you ask, he must re-engineer the job, undo everything the Help Needer has already accomplished so far in the project, stand in the doorway blocking exit to deliver a lecture about his superiority and why the Help Needer has been doing this wrong all her life ... and meantime, the poor kitty has to pee on the floor when she simply can't hold it any longer while her dufus human parents argue all day about the best way to clean her litter box.

In the above example from this morning, the only actual help I wanted was ... "Please get out of my way while I carry this very heavy foul litter box to the garage." Was that too much to ask? Yes, I guess so. I did not ask him to tug the dirty litter box out of my arms, tweak it to crack the plastic, spill foul litter all over the floor I had just washed and then track it into the carpet, then insist on "fixing" the box instead of just going away so the Help Needer could simply fetch the "emergency evacuation litter box" that she has stashed with the other emergency stuff (which must be kept a secrret from the Retired Husband, you can probably imagine why).

If you really need any actual help -- such as "Please hold the door open for me while I bring in the groceries?" then you are really in big trouble and whatever you were doing that would have taken you 4-1/2 minutes by yourself without help, will end up consuming the following entire week.

You must encourage a different hobby than cooking in your kitchen, trust me on this one. Does he have a workbench (preferably apart from the house)?  I had a small success by explaining that the kitchen sink is my version of his workbench. He did understand that, but he still forgets and is wont to camp out there, smack in the way of anything I need to do ...

I tell you, the only answer is "Mandatory Retired Husband Daycare."  At least twice a week, and 10am through 3pm. Mandatory for all of them.
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I love the Daycare idea. But I doubt that one will fly. LOL You write with a great sens of humor which brightens my day. Thank you.

Work Bench...oh goodness no. This book and business intelligent man cannot drive a nail straight. I have seen some of his "projects." He actually thought of being a carpenter upon retirement. I tried hard not to laugh but I reminded him I would like to keep my home and not be sued over his carpenter "errors."

I have just suggested he get a part time job. I've also suggested he take up photography an unknown interest he expressed about two months ago. But he would have to leave the house to do photography. How many ppl would be interested in seeing a hundred  pics of this old woman in her PJ's? I have bought a very nice camera and will try to encourage that hobby.  

I too hesitate to ask for his help. A five minute job does becomes redesigned because after 33 years I have discovered I am not doing it correctly. How did I ever survive without his directives??

I am hoping that we have enough projects in getting this home ready for sale for relocation to a warmer state that it will keep him busy. I can always hope!

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i take care of my 82 year old mom
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Bless your heart helpme. They are not a lot of us that still are willing to care for our aging parents.

We are here is you need or just want to chat.

~Tuck~
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My husband has had Multiple Sclerosis since,probably 1985,COPD, herniated discs,etc.
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Tried to take the poll but couldn't figure out how to..............I feel like my IQ just dropped a good 50 points!  :(

I am a CNA-1 at a major hospital in Seattle. Does that qualify me as a caregiver? I'm also a CL on the Anxiety Forum here and Lordy, if that doesn't qualify as caregiving, I don't know what does! LOL
My husband is now retired and I'm hoping he doesn't notice the hole I'm digging in the back yard to hide his body in...............Wall to wall husband is definitely grounds for insanity, but will that plea hold up in court when they find him?
(You do know I'm just kidding, right?) No need to alert Cheryl that you have a murderess on the team!
My parents are both gone and there's no crazy relative living in my attic. I feel very fortunate that I'm not having to do what so many of you are. I can't imagine how difficult it must be to take care of a parent or spouse.
I get exhausted from caring for people both emotionally and physically at the hospital, along with their families, and then coming home and trying to find some compassion, to say nothing of some energy, to try and help people on the forum. Takes a lot out of you and I've been advised that I need to start stepping back and taking care of myself. Why does that make me feel selfish? Guilty?
Peace
Greenlydia
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Your hands are certainly full. You have spent many years caring for and helping your husband. My heart goes out to you. Only someone that has been a caregiver can understand the responsibilities, challenges and rewards that come with caring for a loved one.

We are here to listen if you need to vent or chat. Thank you for posting.

My Best,
~Tuck
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Welcome. As I said earlier CNA's are the heartbeat of our health care delivery system. You are in the front-lines and are the ones that make the patients comfortable, provide love and caring, an ear when they need to talk and all of which seems to come so easily for the many good CNAs out there. Yes that certainly qualifies you as a caregiver as does your role as a CL.

I think their should be a Forum for woman that are dealing with their retired husbands. :) So far my recently retired husband has made a "list" of the things he want to accomplish around the house. He was a VP of a global company where "lists" were the norm. Back back on track, he views this list every day and selects what he will do. Mind you these are all manual tasks and for someone that has used his brain his entire career manual tasks are difficult for him to say the least.

On his list was the front yard's "two points of interest."  So decided to tackle the first re-do of one of the "points of interest." We have a large and long front yard. Now mind you I originally created this approximately 9 foot octagon shaped area eight years ago. Looked fine to me....and the neighbors. I didn't think it needed a thing. Well he has been working on it for a week and has declared it done twice. So yesterday I decided to inspected it. Imagine my shock and dismay when I discovered my octagon area is now 26 inches wide by 8 feet long. As he stood next to it smiling like he had just performed some kind of a miracle I said, "You've got to be kidding right!!!" The smiled vanished as he said, "You really don't like it?"    

As I post this he is back at the spot for the third time. Goodness knows what the final outcome will look like. I am guessing it will return to it's original state and he will proudly announce his latest accomplishment. Yep, it'll be two weeks of work and nothing will have actually changed other than a lot of dirt and rock moving.  

There must be a special reward in heaven for all of us woman who have tolerated the craziness of these newly retired husbands.  :)  Gotta love em.

~Tuck

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Thank you. Losing my mind, but still hanging in .
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I have bin a caregiver most of my life, starting from when I was a kid and my mom asked me to go with her on Saturdays to help her at a seniors center, (back in the day when a worker could do that) My job was to vacumme the dining area, some other small stuff, and go and keep the seniors company and of course score little treats and gifts hahaha, you know how seniors just love a kid to come and visit, they would even make me little crafty things and wait for Saturdays as if it was all for them.
Then my mom took in some dissabled guys in our house when I was young also and I got a taste of how people need help.
Done care off and on as an adult some for dissabled and some for seniors who wanted to die at home and not in hospital, those were hard to do.
Now I am partly dissabled myself and while hubby and I could feel my work place was trying to fire me or make my life so misserable so I would leave, he said, we should be caregiving together because he felt if I was gonna need care he would already be home to help me and because I had experience we could do it together. He had no experience so my doubts were there even tho he pushed it many times and here we are. He is one of the most perfect caregivers I have ever known, he learns from me and just the hugs and return responces he gets from our guys tells me this was the best thing we could have ever done.
We have two guys, one in wheelchair and one who can walk but is partly in a chair for long disdtance walks and both are mentally dissabled. We love them both cos we were lucky enough to get two with a great sence of humor and as time goes they are learning to be a bit better on the outside. Right now we dont have any respite available cos they are not so stable out there and while we save up our holiday pay we are training them to be easier to manage in little bits with friend caregivers  on little day visits and short respite stints.
Soon we should be able to send them out on an overnight but we have to find people with equipment for the one guy too so is gonna be hard.
Best part is we dont travel anyway so havent really needed to go anywhere and since they are so good here it isnt so bad but we will need a break soon.
I love what we do now even tho before my job realized I was sick and started giving me a hard time I did love it there. Hubby and I were both machine cleaners at the same place, I guess that is why we knew we could do this after many years of working together.
Anyway I feel for you all since I have also done the senior thing, is hard to watch aging and illness setting in and I can imagine even harder when it is a family member.
Even tho this is a job we chose there can be hard days here too, most of them when we are trying to imagine what these guys lose in life because of their limits they were born with.
Anyway take care all and hope things can get better for many of you even if it is extra help being found somehow. Keep your hearts full of all the good memories, that helps.
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Hm, I'm a care receiver posting on behalf of my poor caregiver who is at work.  He cares for me, his significant other.  I have two rare diseases:  dysautonomia and narcolepsy w/cataplexy.  Dysautonomia is dysfunction of the autonomic nervous system; the autonomic nervous system is what controls blood pressure, heart rate, temperature, respiration, digestion, fluid and electrolyte balance/urine output, pupillary reflex, fight/flight response ... basically lots of "automatic" stuff your body does that is supposed to stay carefully balanced.  

Before I got sick, I used to be a caregiver myself.  I was a home health care provider (ABA lead therapist) for autistic children and did home, community, and school-based services.  I LOVE my career and I miss "my" kids terribly.  I'd trade being a care-receiver back for being a caregiver back in a nanosecond.  

BTW, there is something wonky going on with the survey above I think.  You can only see the results, but can't actually respond to it.  Is it closed after a certain length of time?
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Hi Tuck, I too, tried to take the poll but couldn't figure out how it worked either. Anyway, I don't ever remember NOT being a caretaker. My Mom and Dad were the type of person that ALWAYS helped those in need or the underdogs, etc. so I always felt that is what I should do.

When my 2nd husband I married (in 1981), I began my longest caretaking experience and one of the most rewarding of my life. My husband died in 1997 from complications from diabetes. In 1981 he was already impotent, didn't matter to me because I loved the man that he was. We had a wonderful life but I always managed all of his meds, meals, insulin etc. He had an amputation (leg with NO anesthetic because he  had less than 30% of his heart that functioned and ANY amount of anesthesia would have killed him and he had 0% of feeling in his leg and foot which made this possible or he would have died 2 years earlier from infection , had a penal prothesis, had more hospital stays than I can even begin to count.

In 1989, I began the additional caretaking of my Mom and my Dad, they were in there early 80's and there health was beginning to go down hill. My Mom suffered from alzheimers and breast cancer and my Dad wasn't in good health, but didn't find out exactly what was going on until 4 days after my Mom's funeral when he came to dinner and couldn't get his breath. We went immediately to the hospital and he was there for 2 weeks, discovered that he had been having heartattacks for years adn had been self medicating with Tums by the case load. He died 6 weeks after my Mom. My husband, in the mean time, ALSO almost lost his life that same summer. He died in 1997. So I was juggling the caretaking for 3 people that I love more than life itself 5 years and then of course continued with my husband for another 3 years.

So I lost my beloved Mom on June 4, 1994, my beloved Dad on July 22, 1994, my beloved husband on June 25, 1997, and the hardest of all (because I had NO time to prepare at all) my sweet, precious baby boy (32 years old) on July 25, 2000 from a ruptured colon out of the blue.

In 1998, I moved to Tennessee from  Tulsa, Oklahoma (where I had lived my entire life, with my daughter and son-in-law to Spring Hill, TN to be with them and my first grandbaby that was 3 weeks old at the time and started caring for her full time and then my 2 nd granddaughter came along in October, 2000 (after my sons premature death) and have been a 24 hr a day caretaker of her AND she is Autistic. So all of this as you all know puts much stress on your body and adds to ANY pain that you may have.

I TREASURE EVERY MOMENT, NO MATTER IF IT WAS JOYOUS OR HEARTBREAKING AND WOULDN'T CHANGE ANYTHING ABOUT ANY OF IT!!!

I feel very fortunate that God gave me the opportunity to love and take care of these wonderful people and would NEVER trade anything good or bad about it.

I hope I didn't make this too long, I just wanted you all to know about my wonderful family. I'm so fortunate to be with my Daughter and son-in-law (who is like a son to me) and my BEAUTIFUL granddaughters.

Thanks for listening....Sherry
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I am currently I guess the caregiver of my 30 yr. old son. He is bipolar and had a serious breakdown in December. Was hospitalized 3 times during that time. He is presently living at home with me and my husband. He is in treatment with counseling, group sessions and meds. I am the one that takes him to these appointments. Plus, much of the time, I am having to be home with him almost 24/7. He is very paranoid to be alone and plus I have to worry about suicide attempts, which he has done in the past. It gets very hard at times I will admit. I am also bipolar as is my son. My mental issues though are under control. But, this with my son does cause me some depression and anxiety. Plus, I have COPD myself. I have 2 other grown children. They do not help me in the least with all this. I love and will stand by my son regardless though. But, it has me about exhausted along with my health issues. This son also had Tourettes Syndrome and ADHD as a child. It has lessened some, but I have pretty much on and off had to take care of this 30 yr. old. I wonder though in time when my health declines further, who will be the one to take care of me? I can only pray that I never get to that point. But, that is something we have no control over. My husband is not good medically whatsoever I might add. And this 30 yr. old is just his step-son. My husband tries to understand, but does not really. I will always have to watch out for this child of mine. At times, he can function on his own. But, at other times such as now, he cannot whatsoever. Just my little input on caregiving. From what I have read in these posts, others have it far worse than me.

I did take care of my mother few years ago though. She had idiopathic pulmonary fibrosis. She passed away in Aug. 07 at age 69. Complications 4 months later from a lung transplant that rejected. I helpled her bathe, wash her hair, helped her to the bathroom, gave her her meds etc. She was terminally ill, but was such a sweet patient. So strong in her beliefs in God and had faith that he would determine what happened to her. It was a joy taking care of her. As I got to spend special time with my momma during last part of her life. We shared many laughs, talks and tears. Precious times.

God Bless all during your hard work as caregivers and to all those that are ill and need the caregiving.  Thank you
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Hello Lynnkay,

Welcome and thank you for sharing with us.

My heart goes out to you. Caring for anyone is challenging but caring for a mentally ill son must come with it's own unique set of challenges. And there is always the concern and fear of who will care for him when you are no longer able to do so! When we care for an elderly loved one, it is our hope that we will be there till the end.

Certainly it is difficult for your husband to completely comprehend your care, love and concern for your 30 year old child. I think that would be true even if he were his biological child, most men are just made differently from women. I am guessing that your husband would prefer more of your time and attention.

When I cared for my father (he lived with us for almost 8 years and was a lot of care the last 2 years of his life) I neglected my husband to some degree. I suffer with chronic pain and disabilities and caring for my dad spread my energy and time very thin. Fortunately I am blessed with a very understanding and loving husband that also loved my father. But we knew my time caring for dad would be limited by his illness and age, unlike caring for your son.

You have my admiration. You are a courageous and a wonderful mother and woman. Not everyone would do what you are doing. Caregiving takes a lot of hard work, time and dedication. It often tears at your heart.

Regarding caring for my father I once said, I think this is the hardest thing I ever did, but now I know it was the hardest thing I ever did. I think that may be true for all caregivers. But please know that you are appreciated and that your efforts and love are not without rewards. I cherish every moment I cared for my dad, until his passing three weeks ago. I am not sorry for one minute that I gave of my time and self. I am confident that you feel the same.

How lovely that you were privileged to care for your mom during her final months. Those are special times, precious moments that can only be shared between a mother and child who is caregiving.

You sound like a terrific person and I welcome you to our community. I hope you will drop in frequently. Please feel free to begin a new post if you so like with any concerns or questions or just to chat. We all need the help or support of others in these situations. My best to you!

Peace,
~Tuck

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The New York Times recently had a blog about "Who cares for the Caregiver?". The response posts were quite scary. Apparently there are a lot of lonely caregivers.

I've written two stroke and brain injury caregiver books. It's very hard to get any publicity because--I guess--the media doesn't find the topic very interesting. Especially for long-term caregiving situations. (They like survivor stories much better.)

I've been a 24/7 caregiver for many years for a brain hemorrhage survivor. Truthfully I gave up on getting any caregiving help from the internet. In the end, I had to figure it out for myself. I did it my way--and thankfully it worked. But its been nigh impossible for me to share the news.
I don't know if anything will change it. Caregiving is not anything anybody wants to talk about---unless, of course, they are in it.
MM Siles

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Hello mmm12,

I apologize for my tardy response. My father recently passed and than I had a major medical problem creep back into my life so I have been absent from the Forum. Again I am sorry. I see that Cheryl has offered some assistance. She is great and I am sure has some additional great ideas for you.

I am sorry it has not been possible for you to find a caregiver. It is a very difficult task for one person to take upon themselves without a back up caregiver and support. Indeed I was not physically well myself and the ramifications of caregiving may have left me in the same position my father was, requiring a caregiver or worse. The next several weeks will tell how severely the caregiving injured my already injured body.

Many well ppl are just not up to the tasks, as you discovered by the New York Times Blog. It is a sad fact that often an assisted living situation or even a nursing home is the only alternative for persons in need of a caregiver.

My Best to you,
~Tuck.  

I have said it many times. It is the toughest thing I have ever done. My caregiving lasted seven years. Initially it was not so tough as my father was pretty independant for several years but I certainly gave up my own life to care for him.
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Hello Tuck

I am sorry you lost your father. And I also hope the medical ramifications of caregiving are not totally debilitating for you.

After nine years of it, I've come to the conclusion that Caregiving carries a lot of "life" lessons--and very few have anything to do with the patient.

Handling stress, having no expectations for others, accepting life on life's terms, stopping the bad habits I use to relieve my frustrations, working my way out of depression, trying to take care of my health when all I really want is for the other person to get well--these are all things I'm not very good at. But I keep trying.

I'm back to practicing relaxation on a daily basis. It not only makes me feel better physically, it helps me deal with all the aforementioned occupational hazards of being a long term caregiver. I started out with deep breathing and a teenie tiny bit of exercise. Already I'm sleeping better. It works.
Madonna
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I am the caregiver for my 66-yr old obese and disabled mother, who just recently came back from the brink of CHF and cor pulmonale. She's adjusting to her "new" body, having had 75 lbs of fluid stripped off in 4 weeks' time -- and I am her target.  

I do have a sister who lives in another state and she made it clear during Mom's last hospital stay that she could not and WOULD NOT help me or my mother in any way, anymore.  Not that she ever did before.  My sister used to come visit once every 6-9 months -- whether she needed to or not -- leave her verbal bomb and then leave after 2 hour's time.

I recently resigned from a job that demanded 50-60 hours a week and took another job with less hours and stress.  And that seemed like my mom's opportunity to make even more demands on me.

So I am here, dealing with and attempting to care for a verbally and mentally abusive parent - basically all alone.  She is also probably a Borderline and nothing I do is quick enough, good enough -- or just enough.  It's always more more more.  

Social life? Forget about it.  Read a book?  Nope.  I have given up my life for her and I am just about done.  I was looking back at the last 10+ years.  No wonder I have had such a "drought".  And no wonder I have all this stress-related weight on me.

I wish I could relax.  I wish I wasn't so tired all the time.

Right now, I am hanging out at the office way beyond office hours -- avoiding going home.  And then I came across this page.

Anyone else out there feel stuck?  I love my mom, but I didn't sign up for this.
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I am a caregiver for my 60 year old husband and have been for some time. My question is on how to deal with some, not all, doctors, doctor offices, home health care nurrses, etc. Sometimes I need to be his advocate and it works. Other times, it does not. How can I get answers and quality service without sounding _________?
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To Heysooz,

Let me tell you that my heart goes out to you. I do apologize for my tardy response. I've been dealing with my grief and some serious medical issues.

I beleive that there are caregivers that feel just as you do but don't have the courage to express their "trapped" and "abused" feelings. I have been a caregiver in some form my entire life. My father who recently passed was a gracious man that by most standards was easy to care for...because he was so such a good, kind, loving and giving man at heart. I gave seven years of my life to care for him and eight years before that helping him. I am not sorry for a moment.

However not all parents or the ppl we care for are as loving and thoughtful as my father was. Many times we feel as you, "I didn't sign up for this."  Then we have to make the determination when we are lovingly giving of ourselves and being a willing caregiver and when we are simply being taken for granted and abused. If you are not able to give gladly from your heart, are you really helping that person that you love? Do you not both deserve better?

Caregiving is a very complex issue. I certainly don't have all the answers. I wish I did. But from years of being in the caregiving role both professionally and personally I have learned a lot about myself, caregivers and care receivers.  

There are what I term willing and gracious receivers. Those are the ppl that are basically happy with themselves and life and through no fault of their own find themselves requiring care and assistance. The take graciously and give back in return even if all they can give is a smile, a heartfelt thank you and a hug now and again. There were the happy waitresses, the friendly truck drivers, the helpful, caring neighbor and the humble and kind CEOs. They make caregiving rewarding and pull at your heart strings.

Than, unfortunately there are angry takers. They require care and assistance but can even try to deny the fact. These ppl have not been very happy with themselves or life. They can only squeak out a thank you if other ppl are looking and they feel obligated to do so. They lash out at angrily at others, especially those they profess to love and only seem to feel better by making others feel guilty and beholding. They find no joy in life. They were the angry customers on the phone, the gossipy friend or neighbor that could never keep a secret and the tyrant bosses. They can make caregiving a nightmare.

Sometimes the ppl we love and care for are a little bit of both but in general terms I find they are one or the other. Of course their are all kinds of personalities.

Through out life you meet happy, optimistic and giving ppl. Ppl that make you glad to be part of the human race like Snow White's "Happy."

You also meet the pessimists, like Winnie the Pooh's "Eeyore" that never appear to be happy or satisfied with life no matter how much they have or what you do for them.

Think I've strayed from Caregiving? Not really. All types of ppl end up requiring care, including those that are like "Happy" or "Eeyore."  Personally I find the Eeyore's to be extremely challenging. I know my limitations and I am not an effective caregiver for the Eeyore's on a 24/7 basis. I graciously back away from these personalities. They drain too much of my energy. There are caregivers that can handle Eeyore's effectively 24/7. I am not one of those ppl. It doesn't make me a lesser person or a failure. If you find yourself caring for an Eeyore and cannot handle it that does not make you a failure either.

This lengthy explanation of some of my thoughts about caregiving has brought me to this suggestion, please seek some support with a caregivers support group. No one should feel as you do about your role in your mother's life. Frankly I could not be a 24/7 caregiver for my mother either. In my humble opinion you need to decide if you can continue to be a caregiver in this situation. I know you love you mom. But it may be time to seek alternative living arrangements for her. You deserve a life too.

Please heysooz let us know how you are doing. It sounds like at the very least you need a respite. Is your mom eligible for any outside assistance, such as home health care? They offer respite and other avenues for caregivers. Does you mom have a terminal diagnosis. If so she is eligible for Hospice. No Hospice is not a dirty word, look into what they have available. Ppl can be on Hospice for many years. It is not just a three or nine months program. Truly some ppl are on it for years. They were my rock and my spport through the last year of my father's life.

The Caregiver needs to take care of themselves before they can effectively care for others. It's not a sign of weakness of selfishness. It's a fact.

Even as kind and loving as my father was I had moments that I felt trapped. I needed a Respite. It's all part of long term caregiving. We are here for you. You are not alone. Please post again. I will look forward to your updates.

My Best to You and Please Take Care,
~Tuck    
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Hello Baffled,

You have asked a very good question. During my years of caregiving it was a frequent question I asked myself. Because I have worked in the medical field for so many years in my area I know many of the medical staff. However I admit that has it advantages and disadvantages.  

I found the best approach to open the lines of communication was to befriend the nurse and the gatekeeper, better know as the receptionist. I tried to send a thank you note now and again or bring in a batch of baked cookies or something similar. When I went to Fl I brought back cases of fresh mixed citrus. I know that may sounds silly but it seems to work. It sets you apart from the many, many other patients and family members that the office sees weekly. They remember you so when you call they are frantically searching their brain to remember you or your loved one.

When Dad had Home Health Care (HHC) and than Hospice I got to know what each one of the liked to drink. I had coffee with half and half for one, Coke for another and Dr Pepper for another and so forth. I remembered their birthdays with cards and sometimes a little gift certificate to the coffee shop or a fast food restaurant, what ever I thought they would like. I didn't look at is a bribery because it wasn't. It was a lot of work but it paid off. They all became my friends and advocates.

So as I built that I also open the door to communication. I made a list of questions and/or concerns and I presented it to them. I had the worst time with one nurse in my dad's primary care physician's office. So when I knew it was her I had to deal with I enlisted the help of the HHC or Hospice Staff or I requested another staff member. There are ways around every situation.

I found that asking for their help often worked, asking for their suggestions even if I knew what I wanted or thought I knew the best way, I let them suggest it. Often I would "lead" them to the answer, if you know what I am trying to say. I let them call the shots, even though it was often my thoughts or my "shot." I let them be in charge and expressed my gratitude for their wisdom.  

Sometimes you just have to be the witch. At those times be assertive and not aggressive or accusatory. The two times dad went for Respite I had made two pages of notes. One contained all his meds included  when and how he took them at home. The other was a step by step outline by the hour of his daily routine. One copy went in an envelop with the transporter (ambulance) to be given to the nursing staff, one went in his suitcase and the other was given to a close relative who visited him opposite hours of my visits. She was my back-up, my voice when I wasn't there.

Document, document. When you have a question or concern on Monday (that can wait) and his appt isn't till Thursday write it down. And please don't do I like have done and leave it at home. I found that if I placed it in my purse right away I had it when I needed it. If you have to add to it on Tuesday you'll know where it is and won't forget it.

Kindness, please, thank you and praise will get you much further than that hiney chewing you so want to do and they often deserve. You'll catch more flies with honey than you will with vinegar. And remember your goal and the fact that you need to obtain the best care possible for you husband. You'll only get that with pounds of honey.    

If you have any specific incident questions please feel free to post. Our caregivers may have additional thoughts. Just because this has been my approach does not mean it is the right one or that it works in all situations.

Bless you for being the caregiver for your husband. I know the challenges that come with that word and he is very blessed and fortunate to have your love and concern. Please visit us often.

Peace,
~Tuck

  
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Hello Tuck,

You're tardy with a response?  How about me?!?  ;-)  

Thank you for your thoughtful response.  You probably know how much it meant to me to be acknowledged.  

And the saga continues.....  How do I make suggestions to Mom's PCP that he ask her about her re-started again smoking habits and refusal to eat responsibly?  

The office has signs posted everywhere in the waiting area that no family members are allowed in the exam rooms -- and I have been told it is so there is no "group therapy" going on -- like family members telling the Dr what to do.  So, in that type environment, how is the Dr to know about her behavior - because I can guarantee SHE isn't telling him!

My mother has started smoking again after that near-death experience in April and eats junk food like a 5-year old.  Then she has the nerve to say I made her do it -- that she's so stressed out that this is her only release.  Maybe I need to be posting this on the Borderline forum.

My apologies for the mini-rant.

Thank you!
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Hi all,
I am the only caregiver of my husband of 15 years. He suffered a stroke and it has affected his left side. He can walk with the aid or either a hemi walker or the use of the wheelchair.   He has gotten to the point where all he does is eat, sleep and watches TV. I can't get him to go outside, go over to friends, nothing. The only time he leaves the house is when he has doctor's appointments and theraphy. IHis family lives two hours from us and they do not visit. My family is several states away but the do call and check up on me and to make sure that I am taking care of myself. My husband is only 60 and I will be 55 in a couple of months.  He is much to young to not be active. I truly think that he is ashamed, and depressed. I've tried to encourage him to go on walks, be he refuses. I can't help someone who is not willing to help themself. I am going crazy because I don't know what else to do.
Thanks for letting me vent!
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Hi, I take care of my Mother..Better put--I try to take care of my Mother. She has always been a very independent & such a strong woman. I try to think about how she feels now that she can't do all the things she has always done..I know that just seems to make her so angry, most times that's directed to me in some way even though I am all she has..It's hard to realize that my Mother has seemed to change is a short period of time. I look at her sleeping sometimes and it's like she aged 20 yrs in 2 yrs time..Most day's are pretty difficult in some form or fashion but I love her & I'm coming to realize it's getting even harder but I will continue to TRY to care for her as long as we can at home..I am glad to have found this site for it is hard in many way's--emotional, physical sometimes in tears..We have a homecare nurse that comes by once a week, she's only here for maybe 15 minutes {bloodwork health check}..I have a great 22 yr old son that devotes part of his time to us..If it wasn't for them I do not think I could do this completely on my own BUT I would try to because I owe her everything..I do need all the support I can find and all the courage I can muster!!
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Hi Lissa,

Yes, caring for those we love can be very challenging. Bless your heart for taking on the tasks of a Caregiver. It speaks highly of your character. I know the demands and rewards that come with that title.

Imagine, if we even can how difficult it would be to lose your independence? Our children were once in our care and followed our guidance. When the roles reverse it is difficult for both the caregiver as well as the receiver.  

In the final months of caring for my father I had Hospice to assist with a few tasks .... but the overall care falls to the actual Caregiver. The mental or emotional care I think is even more challenging then the physical care.

It's been over a year since my father left this earth and I miss him more today then the day he left. The grieving eases a bit but the empty spot, that pit is always there. So as I have said so many times... cherish every moment. Hug them at every chance and never miss an opportunity to say, "I love you." You won't be sorry for the time you spent caring for your loved one.

Never forget to take care of you. The healthier you are physically and emotionally, the better Caregiver you will be. We are here for you, even if you just need to vent. Feel free to send me a PM.

Blessings,
~Tuck
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I am a professional caregiver. I cater to the developmentally and intellectually disabled population.
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Wonderful words of education. Also getting copies of previous medical treatments from other facilities helps in evaluating a patient.
Compassion without sympathy and focus without emotion takes a strong constitution. You make some very good points here and I think you should repeat what you have mentioned.
I worked in the medical field also and now need the attention of a caregiver which was very hard to accept but being bedridden gave me no choice. I am now up and walking due to the constant medical research my caregiver has done for me. He never gives up and will fight with me and I can yell all I want, but he just listens and continues the research until he finds something for me that can work.
I was a caregiver myself many years ago and found that sometimes you are the bad guy and yelled at constantly but that is only because the person in need, has someone to yell at and will listen. Sometimes venting is just a way of letting someone know you need the care that no one else will offer.
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How's this for a twist of fate.
I was a caregiver for many a veteran friend. I was also working at the time but spent my off hours with friends who needed help and could not get it. Dealing with the sick gave me strength to 'learn to be able to help'. At times when it became 'rough', I had to take a break and renew my energy. I rented a hotel with a spa. Found things I liked to do. Then with my energy levels 'renewed', I returned to taking care of my friends.
Years after my retirement, I became the disabled one and felt alone. I met a friend at a bar. We talked about many things. He showed interest. We became very good friends.
My health eventually went on the decline. I was very scared and the fear of what was happening to me led to more and more doctors treatments. I could no longer drive at this point. I had doctors appointments and had no friends to help, so I thought.
The friend I met at the bar, eventually moved in with me. He saw the pain I was dealing with and the treatments were not working. He took the bull by the horns and got me treatment to other doctors. He perused many options for me. I had no choice except to listen and learn. Years of treatments and surgeries and my friend was still there. He never gave up. He never wore down even though I did.
Now I was the one that was disabled and needed someone I could trust. I needed a caregiver. I never saw myself in this spot but I now realized I was not alone. My friend helped me through grief, pain, medication, withdrawal, surgeries, new doctors, new treatments and so much more.
When all my family were dying due to cancer, one by one each year, I asked my friend WHY, WHY...?
His answer....People die...? What a sobering thought. Yes it is part of the circle of life.
My days are a little better now but each day brings different problems with my health. I no longer have fear of the unknown but know that I have someone who has built strength in me and I am thankful for the leaning process. What an education!!!!
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