The Caregiver... How are YOU doing today?

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The Caregiver... How are YOU doing today?

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This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.

I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.

Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.

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B bookluvr Sep 2017 · Answer 1 · 2017-09-09T09:54:02.000-0400

Downloaded 1 video that I THOUGHT would go to the DVD. It downloaded. I just can't find where it went. Definitely not in the CD. Or anywhere. Too tired to think. Time to sleep. Midnight.

B bookluvr Sep 2017 · Answer 2 · 2017-09-09T09:36:18.000-0400

Sorry, BootShop, I was chicken. I turned down sis' offer to spend the night. She actually told me that her spirits are friendly (compared to the ones in my dad's house). I said, yea! Because you're the family! I'm the outsider. I even tried to ask oldest sis if she's interested in spending the night at other sis' home. Oldest said no. I refuse to sleep alone in a bedroom that gives me the spook. And the hallway and the bathroom. I did Not even tell younger sis 'maybe next time.' My imagination will go crazy and scare myself silly.

You know my grown up niece from Colorado visited last year. I gave her my bedroom to sleep in since I slept in the Livingroom with bedridden dad. One night, after she used the restroom, my bedroom door was locked. Yet, when I turned the knob, it opened. Niece had this shocked look on her face. I walked into my bedroom and told the spirits that she's not moving into my bedroom. She's just visiting, Visiting. That she will be leaving soon. So leave her alone. After that, she was never locked out again.... later, her mom told me that her daughter said that if she ever visit us again, she's going to stay in a hotel.

Anyway, after that, same niece visited that haunted hotel that was used in the scary movie 'Shining'. I was curious and asked if she felt the spirits there. She said no. She definitely felt the spirits here on island but nothing at that hotel.

B BootShopGirl Sep 2017 · Answer 3 · 2017-09-09T09:09:25.000-0400

Bookluvr, glad you are taking quizzes and that means the "spirits" didn't get You last night!

B bookluvr Sep 2017 · Answer 4 · 2017-09-09T04:32:45.000-0400

Happiest course is so funny when taking the short quizzes. I'm obviously not paying attention to the videos because I seem to keep getting the wrong answers.... Question if Prof Raj cousin will choose which options at the salad bar. Response: This should not be selected.... You clearly underestimate Prof Raj's family's money-mindedness!.... They put some fun into this course. I'm going to try to figure out how to download those videos! .. So far, I've been taking Screenshots on the videos main points and pasting it on my Word Document files. I type a few words about the screenshots.

If a Genie was to grant you 3 wishes, what would you wish for? I pondered that question. My answers are financial security, good health and to be satisfied with my life..... On their survey, it was money, fame/success and relationship.

After comparing my wishes vs the survey, it made me wonder: Does our caregiving experience affected our wishes?

J JessieBelle Sep 2017 · Answer 5 · 2017-09-08T23:03:19.000-0400

Barb, you are so right. My mother wants to go to the hospital a lot. Before I do anything, I find out what the problem is and figure out what the best thing to do is. Usually we don't need to do anything. The problem is something that can be attended to at home or goes away on its own. If something really is wrong, then a call to the doctor or a trip to urgent care usually is enough. It's a lot cheaper and a lot faster than the ER, and a lot less hectic.

B BarbBrooklyn Sep 2017 · Answer 6 · 2017-09-08T17:44:18.000-0400

Jim, when your dad wants to go to the doctor or ER, call the Dr's office first and ask for a callback.

Just because your parent "wants" to go doesn't make it a good idea.

B bookluvr Sep 2017 · Answer 7 · 2017-09-08T17:42:27.000-0400

Taking my car to the shop - recall on the airbags.

Fave sis invited me to the afternoon BBQ and said I can spend the night. I was startled. I completely forgot that I can spend the nights away from home! I was so excited. Until I immediately remembered her house has spirits. They watch me when I walk the narrow hallway to the bathroom. At nights, they're also in the bathroom. The bedrooms don't like it when I enter it alone. It's fine as long as one of my sis and her kids are in the same room with me. I realized that I will be sleeping in the spare bedroom all..by...myself! I'm bringing my big night lamp (no dinky light), flashlight and lantern.... and a part of me, most of it, tells me Not to spend the night.... I spoke to oldest sis who sees spirits. I told her of my senses when I'm at sis house. Oldest sis shuddered and mumbled, "I wouldn't." ... The spirit might follow me home. It's happened before. Several times...

B bookluvr Sep 2017 · Answer 8 · 2017-09-08T17:32:19.000-0400

Jim, when I read here on the websites of caregivers like yourself dealing with their parents' beliefs about their different ailments (real or not) and their desire to go see the doctor, I always cringe. I've always hated going to the ER or clinic.. the long wait, having to use the restroom, and dealing with their behaviors in public. (My dad's mouth had no filter.). I just cringe. It's so foreign to me because my dad was the opposite. Trying to get him to the doctor was close to impossible....

B bookluvr Sep 2017 · Answer 9 · 2017-09-08T17:24:35.000-0400

Dbrooks and Fisherman, both of you are constantly battling with your super-hyper loved ones. I tried to recall the times mom kept walking and walking in circles for hours. It was exhausting, she wasn't. My dad took her to the doctor and Rx Haldol. Mom sat for hours with a blank face. Dad took her off it.

Fisherman, I don't even know how one can respond to your wife's new information about her parents. That's a first. A very unusual conclusion. Was your wife's former occupation a writer? I guess just vent here of your frustrations.

V Veronica91 Sep 2017 · Answer 10 · 2017-09-07T14:07:20.000-0400

Jim Pam's advice is correct "Just do it" and let the rest be tuned out. The old man is not going to change at this late hour and i can't say i blame him. He is suffering from a life ending disease and knows that even if he follows Dr's orders to the letter he is not going to get better.
So if he finds comfort in martini before dinner it probably stimulates his appetite so be thankful he is actually eating and hopefully getting protein into his tired old body.
Hard for you to watch and endure but he is a big boy and making his own decisions is his right even if they are poor choices.
My FIL had numerous heart related problems and was supposed to eat a fat free diet, but every morning he had a fried breakfast of eggs, bacon and sausages. When challenged he said that at his age, almost 90 he had the right to treat his own body the way he pleased and he enjoys his fried breakfast

B BootShopGirl Sep 2017 · Answer 11 · 2017-09-07T08:49:31.000-0400

Oh Jim I will pray and be thinking of you ! I'm so sorry your going through this. My mom broke her pelvis and back. She was a Sunday school teacher for 50 years and has dementia and MY goodness the crazy things that came out of her mouth in the hospital. Yep at the Dr. s office later too. Impatient. Whew! Hang in there!

J JimL1953 Sep 2017 · Answer 12 · 2017-09-07T08:00:28.000-0400

Thank you Pam and Jessie. It has been a long road indeed. I love my parents, but my dad can be a trying individual. He is impatient beyond belief. He thinks doctors should be able to give him a quick fix for whatever ails him at the moment. He won't change his ways and wonders why a med isn't working. For instance he has reflux which in his case causes a persistent cough. Certain foods trigger it yet he won't stop eating them. He is on a very strong med for the lung cancer and was told no alcohol yet he still has a drink before dinner. I believe this played a part in him falling and sustaining a concussion. His nurse and myself explained the do's and don'ts for concussions. He calls me at work complaining of a raging headache so I leave and take him to the ER finally getting home around 2:00 AM. What he failed to mention was that he sat five feet from a television set to it's highest volume for close to twelve hours. Today he insisted he wants to see his doctor. When we get there he will be mad because he has to wait and will get quite vocal about it. Then when we get to an exam room he will carry on even more because he has to wait. I have been awake since two in the morning stressing out over what this day will bring.

J JessieBelle Sep 2017 · Answer 13 · 2017-09-06T23:56:16.000-0400

Sometimes when they get to a certain age they don't even see us as people with needs anymore. They can still see us as young even when our hair is gray and we're on Medicare. Jim, I know you get tired. It would be nice to hear that they appreciate what we do, instead of hearing anger about why we don't do more. I know you don't want to upset your father at this late date. I hope it helps to vent some of the frustration here. I have a feeling that you've been on a long road.

Pam, I say the same thing as your husband does. I must let things go every hour because it isn't worth the fight. I have probably become the most passive person in the northern hemisphere. Sigh.

P pamzimmrrt Sep 2017 · Answer 14 · 2017-09-06T21:24:42.000-0400

Oh Jim I feel for you. This weekend my hubs cousin ( who is 65, divorced and knows everything while he cant live it) gave my mom some "advice" .. And I got my butt chewed out that evening. Then I come home tonight and she gave my hubs heck while he was takeing her to the bank, etc. why don't they see what we do out of love, and also that we need to take care of ourselves? She also does what she wants, and the rest of be danged! Good luck! I know I am beginning to wear out sometimes.. my latest advice to hubs is "just DO it,, its not worth the fight!"

J JimL1953 Sep 2017 · Answer 15 · 2017-09-06T19:44:29.000-0400

My dad who is one hundred has kidney cancer which metastasized to the lung.I own a small business which requires long hard hours. I just di 120 straight twelve plus hour days in a row. During this stretch my sister covered for me with my parents. She was there twice a week. My season just ended and I am back to every day at my parents much like I did last year. I had told my dad that I couldn't be there every day and needed a break. I just got a phone call from him and got cursed out because I didn't go there today. My dad is not a good patient and doesn't listen to directions. He is on a heavy narcotic for coughing,but insists on having a martini. Consequently he fell and sustained a concussion. He was told what not to do,but did it anyway with the symptoms getting worse because of his actions. . I am on the receiving end of his anger. I am tired of it.

G golden23 Sep 2017 · Answer 16 · 2017-09-04T19:33:57.000-0400

welcome dbrooks and fisherman

dbrooks - fatigue seems to be a way of life with caregiving. Be sure to build in something for you, somehow. It sounds like you have too much on your shoulders. Could either dad go into a facility?

fisherman - great that you have not lost your sense of humour. Booth aside, I hope you get some breaks during the day/week.

A AliBoBali Sep 2017 · Answer 17 · 2017-09-04T19:14:44.000-0400

Fisherman, welcome to the "YOU" thread. Are you home with your wife every day, giving her daily care? Or are there some paid caregivers or other family help that comes in to give you a break? It's such a tough spot you're in. I hope you'll keep posting and get support. This thread is all about giving caregivers, past and present, support in their lives.

Same to you, dbrooks. Stick around and post and vent as needed. Some caregiving situations aren't readily "fixable" and that's probably when we need support the most, when there's no end in sight.

Wanted to say welcome as I haven't seen either or you post on Aging Care before. I hope you stick around and get the support and understanding you need.

F Fisherman Sep 2017 · Answer 18 · 2017-09-04T18:56:17.000-0400

Having my daily tussle with my wife about her demanding to go see her parents both of whom have been dead for over 40 years. Says she has new information that her parents caskets were empty when they were lowered into their graves.
Other than that the play was fine sayeth Ms Lincoln.

D dbrooks Sep 2017 · Answer 19 · 2017-09-03T18:19:38.000-0400

I have the same problem my father in law is in late stages and he is always on the go in the house. I go to use the restroom and he's gone I have to lock everything that pertains to food up because he will eat it all but he does not gain weight. He is constantly having me to run after him I am almost 60 yrs old and take care if my dad also who has a brain tumor. I am so tired.

B BlackHole Sep 2017 · Answer 20 · 2017-09-03T09:55:12.000-0400

Yes book, the estate pays all related expenses -- while the estate is open. Should estate funds run out while the estate is still open, it is solely the executor's responsibility to keep current on bills and expenses. Out of his own pocket. That's (one of the reasons) why being executor is an enormous responsibility.

Many folks glady accept the role of executor (or persuade a parent to choose him/her), thinking it's their big chance to be in charge and boss around the other heirs. That's certainly possible, if the executor is selfish and disrespectful.

But being executor is, ultimately, a role of extreme fiscal responsibility. This sometimes comes as a rude awakening to the ad-hoc dictator.

J JessieBelle Sep 2017 · Answer 21 · 2017-09-03T08:30:53.000-0400

bookluvr, your message made me very sad at how badly you were treated. It is very sad if the women are treated like that. Shame on the men, and even like expecting you to pay something so they can inherit. :'(

B bookluvr Sep 2017 · Answer 22 · 2017-09-03T08:05:35.000-0400

Cwillie, we, the family went to the laywer. He looked at my brother and told him that he should be paid as administrator. And that it's the heirs who should pay him. So after we left the lawyer, I told bro that I cannot afford any legal fees for the lawyer. That my 2 brothers in the states make more than double my paycheck. I wouldn't even qualify for a $5000.00 loan. So, if brothers won't help pay the lawyer and court fees (the court will only charge a max of $5,000), then bro, as administrator will just have to sell the house/land to settle all monetary debts. Bro was not very happy about that. Remember, he wants this house/land for himself and his grown up children. Selling this place is HIS last resort. As for me, my dad always told me that this house/land will go to my other 2 brothers in the states. If I wanted land, then I should marry a man with land. So, at this moment, I have never really viewed this place as mine. So, selling it is not a hardship for me. It is for oldest bro because he has always wanted this place. He has all his caged roosters on dad's upper land, his dog, and all his broken down cars - all on dad's border. He and his family all park on our front yard. He's been slowing moving his stuff on dad's land for the past couple of years.

The lawyer said straight out that the heirs will pay all costs. Thanks, Cwillie. I will need to keep reminding myself not to put any money for the probate costs. I keep forgetting. I think I need to put a post-it note on my bedroom mirror reminding me of this. Estate pays, not me. Thank you!

C cwillie Sep 2017 · Answer 23 · 2017-09-03T07:44:55.000-0400

Book, the way it works is that the executor/administrator is paid by the estate, NOT the beneficiaries. And that is taxable income, so because of that (as well as a sense of familial duty) many people do not accept a fee. You DO NOT owe them anything, and even if you did it would be taken from your portion of the inheritance.

B bookluvr Sep 2017 · Answer 24 · 2017-09-03T02:46:08.000-0400

SIL texted me, saying that my (oldest) brother would like to have mom and dad's hospital beds. Mom's bed is completely manual. Very, very easy to raise/lower. Dad's own is electrical powered. Mom died on her bed - which everyone knows I absolutely refuse to lie on it. I was torn about this. You see, my acid reflux is getting worse. Using the wedge pillow and more pillows on top - is not working - because my GERD is getting worse. My fault. I have such a difficult time not snacking after 8pm. Drinking water after 8pm also worsens it while sleeping.

After some serious thinking... the lawyer did tell oldest bro that as named administrator of the Will, the heirs should be paying him. But it's up to him to waive the fees. Sooooo... I've decided that I cannot pay bro any fees as administrator... {grumbling...that HE was suppose to be taking care of mom/dad when they were alive - he admitted this to me when mom died...} I told SIL that I would like to keep one bed. They can choose whichever bed they want. They get first dibs. She chose the manual. I asked if she's sure. She's sure. {Thank Goodness! Because if I had asked bro, he would have chosen the electrical one!}

B bookluvr Sep 2017 · Answer 25 · 2017-09-02T20:50:40.000-0400

Jenaynay, I know that you have very limited time to be online. I would strongly recommend that you hop around this site and just read different discussion threads. I really think it's very important as caregivers to protect ourselves. Knowledge is very important. Ignorance is scary. Even if it means just taking 5-10 minutes before bedtime or upon waking up to read different topics here.

When I first found this site, I read everything that I could - even on subjects that had nothing to do with bedridden parents. I read threads about "how can I get my parent to drink more water" or... about their personality changing.... or how vindictive/abusive the parent is towards the main caregiver but very very nice to everyone else... or having problems with bowel movements... Trust me! You will be soooo glad that you've read about it months/years ago.

When my mom was violent and was sundowning (walking all over the place, getting lost), my SIL (sis-in-law) told me and fave sis that we should lock mom up in her bedroom. Sis blew up and they had an argument. Who was SIL to tell us to lock up mom! .. Years later, I found out from this site, that it is illegal to do that. What if there's a fire? Mom would not have been able to get out/escape.... Anyway, Dad's solution was to just put several extra sliding locks on all the exit doors. Mom didn't know how to unlock those.

J Jenaynay Sep 2017 · Answer 26 · 2017-09-02T18:43:43.000-0400

Thanks , bookluvr. I have been supporting dad for 7 years now ,he has SS but its enough to pay his bills, not much to help me. The past year has been the worst , had to change jobs to make ends meet, but now I commute 30 miles each way. I'm a chef by trade, so long days are normal. BUT, I'm about to turn 55, don't know how much longer I can keep going at this pace. I do exercise, and eat right.
Dad is in denial about turning 87 soon, I can't seem to get it through his head that he's not getting stronger. Just an hour ago, he dropped the mail and almost fell trying to pick it up. Yelled at me when I tried to help. I am going insane , I feel isolated. No friends want to be around me anymore,i must be a real drag,lol.
So I found this site, and now I know I'm not alone in this struggle. Its been helpful....so has Moscato,lol!

B bookluvr Sep 2017 · Answer 27 · 2017-09-01T18:02:50.000-0400

Hi Jenaynay. I remember doing that for years, helping dad with mom. I'm fortunate in the sense that I got 5 hours of sleep.... Most of my life was just home and work. I didn't have weekends free, either. Vacation away from home was very rare - money wise and finding someone to help with the caregiving. When dad had the stroke and became bedridden, I couldn't quit my job. We're not independently wealthy.... I was overwhelmed by it all... I even googled "caring for bedridden parents" and found this website... I vented and vented all my anger, bitterness, vengeful feelings. And most of all, I found support here.

Please feel free to vent. We all know what you're going through in one way or another. I really soooo feel for you. {{{{HUGS}}}}

J Jenaynay Sep 2017 · Answer 28 · 2017-09-01T17:21:40.000-0400

Oh,just another 14 hour work day. Then home , do what dad needs. Maybe sleep 4 hours,do it again tomorrow. If I don't work like this, we have no home.
I'm tired.

S Sendhelp Sep 2017 · Answer 29 · 2017-09-01T09:56:47.000-0400

Always Hugs for you Book!

B bookluvr Sep 2017 · Answer 30 · 2017-09-01T08:57:36.000-0400

Thanks, Cwillie. I wasn't surprised with the result. I actually laughed because it was true. Therapy?? I sat here thinking about it. I reread the survey questions. I answered it truthfully. But the questions don't really apply to me because I spent 25 years caregiving. So of course, my life is not close to my ideal, etc..

So, with that aside, and not growing up with hugs, encouragements - this course is perfect for me to learn about happiness and how to achieve it. I totally agree with you about still taking the course.

The Caregiver... How are YOU doing today?

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