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547368 tn?1440541785

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
46 Responses
Avatar universal
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.  
547368 tn?1440541785
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
Avatar universal
I currently care for a client who has had alzheimer's for 10 years.  I am a professional caregiver/CNA.
D.
547368 tn?1440541785
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
Avatar universal
:-))  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 :-))))
Avatar universal
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
Avatar universal
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
547368 tn?1440541785
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~  
547368 tn?1440541785
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  
Avatar universal
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  ...
547368 tn?1440541785
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~
Avatar universal
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.

Avatar universal
Hi all, glad that we are all in the same boat!  Which sometimes seems sunk!
547368 tn?1440541785
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~
Avatar universal
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.
547368 tn?1440541785
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!

675329 tn?1297288378
i take care of my 82 year old mom
547368 tn?1440541785
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~
Avatar universal
My husband has had Multiple Sclerosis since,probably 1985,COPD, herniated discs,etc.
370181 tn?1595629445
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
547368 tn?1440541785
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
547368 tn?1440541785
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

Avatar universal
Thank you. Losing my mind, but still hanging in .
1300526 tn?1275771621
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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