The Caregiver... How are YOU doing today?

Richie, I hear you. I have siblings that hardly ever visit. they send a card at Xmas. they only sign their name. it is totally pathetic! but, if mom were to send them some money, like a grand, oh then we would be hearing a different tune. yeah right. we can TELL what matters to these people. but as for your nephews, there even less excuse---maybe they should be "reminded" of all the nice gifts they received. it might be a stretch, but, do you have receipts of the gifts? maybe spend an hour going over your files, make photocopies of the recipts, and send them along with a note, "I hope you appreciated all the nice things and nice thoughts your auntie shared with you, when she was younger. I see you in church every Sunday, and wonder if you could put your Faith into Practice?" maybe that would get some action.......

My wife suffers from aphasia and its gotten real bad in the last year. Her sister and her husband drop by every couple of months for ten minutes. She has three nephews, who she showered with gifts for many years when they were growing up. We have never even received a phone call from any of them. Nice! Yet they are in Church every Sunday. I wonder what they do there?

I worry about no one having POA over dad. Every bill is under his name. Same as the Post office box.

My nose hasn't bled for several days now. Since I've been doing my best to hydrate, and did some cleaning in the weekend and sinus massages, my sinus problem has gone down - except the stuffed head/ears. Tonight, I'm hoping to try for the first time the neti pot. I'm using the Pedriatic kit - using a bottle instead of the neti pot. (Yes I did buy a neti pot but I think I prefer the bottle? Maybe? Won't know until I try both.) Time to change his pamper. Then shower. Pay some bills. Then clean microwave again so that I can warm up the distilled water for my irrigation. Later!

Oh antilane33, I hear you and its so hard. I moved Mom in for 7 weeks and its been 7 years. Being in my late 50's with a kerfew sucks but at least I can get out mornings now. Sometimes I just dont want to get up . I have gained a ton of weight and miss my life. My kids have moved out and now I am tied down with Mom. Love to complain but I wouldnt have it any other way, love her so much. Her stage 7 have been for over 4 years now, I think it goes on for eternity sometimes. hang in there.
Hi Book, nice to hear from you! Have a great Get-a-Way, you deserve it girl !

Been at my dad's house for 8 months now, can't find enough help to be able to go home to my own family. Family help is, well, not much help. They all mean well but have no clue what, when or where, so it's me. looking into paid 24 hour paid help so I can spend my 50th anniversary with my husband in May. Have you any idea what it's like not only taking full responsibility of medical, emotional and personal care of a bed ridden 94 YO father, his finances, household, and is 90 YO wife (not Mom)? Sure you do you are all in the same boat just different oars. Thanks for being there for me and everyone else on this forum.

Yes I do have DPOA and MPOA, thank you for this great idea. I should be able to get them to GO and do their 3 or 4 hrs, and pay them, and if mom refuses to let them in, I believe they still should get their pay. Maybe other people feel differently, but I know this lady relies on her various caregiver jobs to make ends meet. Like put food on table and pay bills. So mom definitely cannot be canceling her!

Do you have POA for your mom? I have had to tell my moms doctors office not to cancel appts if she calls in to do so without checking with me first. She has canceled appts, not sure why, so i gave them instructions to contact me before canceling if she calls them so i can say either yes, go ahead and cancel....or no, dont cancel it. Maybe you could do that with her caregiver.

The paid caregiver is upset and thinking of quitting, because mom cancel too many times. So I had to try to convince my mom, don't cancel! Even if you don't feel like going "out" to grocery shop, the caregiver can still come in, clean & be there for some company.

I tried to take this morning "off" from doing mom stuff (she doesn't live with me but I go her house nearly every ). One of my pets was sick all thru the night, and I was just exhausted, so I turned my pphone Off. I thought well she has her once a week paid caregiver coming at 9:00, so I will go back to bed. Well, wouldn't you know, about 10:30 AM I wake up, and see about 5 or 6 phone calls from mom, and mom canceled her scheduled paid caregiver (which she is not supposed to do!). So now I get to.mop up this mess (as well as my pet's diarrhea.....).

Hi Reverse! I’m so glad that you now have someone to come in 4 hours every morning. That sure makes a big difference for you, to get away and just have some me-time. Weekends would be great. Because that’s when everyone have time to do things together – shopping , eating out, or go to the park, etc… Parties… Yeah, I’m still here. Dad has started his journey but my stress level of doing this for a decade or two is finally reaching me. I need to get off this island – it’s the only way I can be 100% caregiver-free.

Hi Gawomen, just do your best. Even if it means getting a kitchen chair, an umbrella, and set up outside in the yard or garage. If you have a baby monitor, you can bring that with you. Sit down and just enjoy the view, or read a book or web surf on your smart phone/tablet. Just be inventive on ways of getting out of the house.

Jam I know what your going through. I do it myself. It is difficult as I have been caring for my ML for 5 months, almost 6. I so wish I could have a different life but it has to be this way for now. I am going to talk to my husband of getting a sitter for 1 day every two weeks because if I dont get out soon I am going to lose my mind. this week I took ML to the doctor for labs, that was on tuesday...it only took 30 minutes and then we were right back home. Then wednesday I got out for 1 hour to go to the pharmacy which took about an hour...then today I went to the Walmart for about an hour. That is all I got out this week. I can not stand to be in the house that much time. It has rained constantly for about 2 weeks. I am about to lose my mind. I feel so very sad. I feel like I have no life. Its not that taking care of her is so bad, but it is so time demanding. She has cancer 3rd stage, kidney failure, heart problems and is 85 years old. I know all of you go through things like this too. We are at my house and I try to get motivated to get things done Ive wanted to do, but I feel as if Im in a cage and frozen. Dont get alot done except take care of her.

Hey all, over seven years now with cargiving for mom 24/7. I just hired my part time cna for 4 hours each morning. I had it one week and then she went on vacation. argh. Still need weekend help because its family time then, working on it. When I do get out, seems like ai am always worrying and buying supplies for mom , or food.
My Mom's dementia/condition hasnt changed in over 4 years. She cannot talk or walk, I puree her foods and feed her and change her diapers, bathe her, etc. Sometimes I wonder if I will be too old to enjoy the after-care-life or if I will go first. :0).. I thank God my husband is a saint!
Its tough only getting a few hours out and watching my watch like a teenager who has to be home on time, I am in my late 50's! Well when Mom kisses me or laughs, I melt, love her to death! Bookluv, youre still at it too I see! Not sure where you live but I always get an antibiotic for sinus infections. My Doctor knows my situation and will prescribe it over the phone for me, I am lucky there. As for allergies, singular and daily nose spray has cured my husband of a life long battle with allergies, its amazing stuff. Good luck and glad to see you are going on vacation. Around here we can get a free week of a nursing home for a vacation, but I wouldnt put mom thru that. Take Care All.

I read yours after what I wrote, Veronica. I love the prison issue variety. That is so appropriate.

You know, I don't consider living in my parent's house a real benefit. It does save me rent money, but actually I would prefer to pay some and live elsewhere. I would much rather not live with my mother, but it's needed. I imagine a lot of us feel like that. Mom talked about paying her rent one time and I said it wasn't going to happen. It would be a bit like making a prisoner pay rent for their cell.

Glad I think the BG panties is very offensive when used on someone who is trying their best and used to imply "get over it others have it worse than you" For me it is on the funny comment side like needing a helmet

Proper response to "big girl panties" -- you mean those white cotton size 10 thingies? If you're talking to a larger woman, make that size 12. You don't want to make it sound personal. :)

That big girl panties euphemism really bothers me. Why I don't know exactly. But even more so since a marketing person at a facility used it directed at me. Nope, Mom and L will not be going there! Big mistake, no commission from this family!

well done trying to cope. you have made giant steps. If mom has money then it is there for her care so get as much help as you need. If POA thinks she can wriggle out of paying tell he you will report her to adult protective services and mean it. No free housing is woth the cost of 24 hour care (approx $200 for 24 hours) three days of that and you have more than paid your rent. So go for it girl you are already wearing your lace trimmed big girl panties. Everyone else you will have to buy your own. They come in all styles and sizes you don't have to wear the prison issue variety.

I had a great day yesterday!! got some yard work done. figured the paper work could wait til it rains tomorrow. my friend came by and cut some trees down.
I fed mom .put her down for nap.we went for motorcycle ride.. out to lunch ( sat outside) I got some fresh air and sun.. then he came over to grill..after I fed mom and got her ready for bed.. sat outside by the fire pit..had a few laughs..
It was just simply a good day.
today.... after mom goes down for nap.Im sneaking away to a restaurant to do a food tasting for bridal shower ( yay!!! no cooking for me) maybe another bike ride?? later /// screw the house and paper work.. ITs sunday,,thou shall not work.....gotta take care of the care giver !!!!!!!!!! feeling good this weekend..!!!!!!

TryingToCope, yes, you definitely had a breakthrough. Several ones, actually. You realized how much your siblings care about you and your mom. You realized that you can beg and beg, and they will do nothing. You realized that since family is not going to help you, then you will go outside the family for help. And Too Bad about the Expenses! You tried for 6 months to not take this path but got No cooperation from siblings. I truly hope that sis with POA does not deny you these outside help.

I'm so glad for you. To be actively seeking out help from Various places - for your mom and for you. Keep it up. And please continue to update us.

I think I am at a "breakthrough" spot or a pivot point in life. I have made mom on a part time basis for 5 years, but started my full time around the clock care (with her living in my home) close to 7 months ago. I spent the winter mourning the loss of my mother, mourning the loss of "feeling at home in my home" and mourning the loss of my life. I spent that 7 months begging siblings for help - for them to give me breaks now and then to prevent me from breaking down or going over the edge. The breaks didn't come, the struggles got harder, my own health took a nose dive, and mom settled into her new life. A week ago as Spring is finally starting to break I got myself "unstuck" and moved from denial and anger to acceptance and healing. I messaged siblings and told them I will be bringing in more paid sitter time so I can re-claim a tiny bit of what is left of my life and started doing so immediately. Bills will be submitted to sister with POA for payment. Period. No more arguing, begging and pleading - it is time to start doing. I am also joining a local support group in May and have been contacted by someone from the alz. assoc. telling me she may have a couple of volunteers available to help me a little bit. I hear people tell others to forget about siblings that don't give the help you need and find the help elsewhere - but getting there is a process and for me that initial process took over 6 months. Acceptance of lack of help from family and movement towards paid help is giving me the strength I need to go forward.

I think our bathroom paint is bad. Cockroaches eating it at night, ends up sick. Mom had repainted the bathroom in the late 70's. It's never been painted since. Just peeling, flaking off. That's what the roaches are eating - the flaking paint. The ceiling is too high. Even using a mop, I cannot reach it.

I kept bugging sis for the vacuum in her bedroom (formerly dad's room.) She doesn't want me to come in to get it. So, last weekend, she gave me the vacuum and the accessories. I asked, "Where's the hose? I cannot vacuum using the accessory." Yesterday, I went to kmart and thought this vacuum was on sale for $45.00. At cash register, it was $99! Forget that. I came home and told sis about it. She told me some roundabout story about it not being in her room. I said, "If the vacuum was in your room, and the accessories was in your room, then the hose is in your room." She finally found it - hours later. {{shaking my head}}

Water pipes, electrical are old. Same age as when this house was built. When oldest bro of next door was an electrician, he didn't rewire our house (but he did for other relatives.) Still won't do our house. But he does it for his. Whatever...

I'm no longer in the mood for cleaning. I need to vacuum my bedroom upper bunkbed. I was taking stuff off it (using it for storage), and found so much dust and flaking paint. Again, the paint job was done in the late 70's. I have most of my bedroom windows shuttered due to the mango trees. I don't use the air con in my bedroom...which I really need to clean the filter and vent. I'll make it for another weekend.

Next goal, buy those sweeper mop so that I can do a weekly quick mop up of the livingroom and my bedroom. I think this will cut drastically on my sinus/allergies. I still haven't set up the humidifier. Having ant problems. They're attracted to water, honey and my skin. They don't bite dad but I'm getting bitten by these ants on a regular basis - doesn't matter what specie - here at home and at work. Drives me crazy that these ants don't even bite my nieces.

I just finished buying a set of ear planes in Amazon.
Going through my mental list:
Clean air con. Done!.... clean bathroom walls. Halfway Done!.... clean fridge / micro. Done!....
Ear planes. Done!....
Buy carry-on bag with wheels and handle (@ Kmart). Done! (FYI, I used the backpack as carry-on to Hawaii, it still put a strain on my neck. So, now I'm going to try wheels/handle carryon.)...
buy Elastic shoelaces (so I don't have to bend down to tie/untie my shoes at TSA screening). Done!
buy new insoles (fresh) for my long 23-hour travel to Norfolk. Done!

As it gets closer, I will decide which real paperback books to bring with me. I learned on my 7 1/2 hour flight to Hawaii that reading non-stop on a kindle was very hard for the eyes. On my last trip to Colorado Springs, I read non-stop (no watching videos) on the 7.5 hr flight to Hawaii, 3 hr layover, 8 hr flight to Houston, 3 hr layover. And did not suffer any major headache or eye ache like when I used the kindle on that 7hr flight to Hawaii. So, real books for the air plane flights....And disposable - where I have no compunction in leaving it behind when done reading...

Book, you should have a wonderful trip. Pay attention to whether the sinus problems are reduced or maybe even eliminated. I have wondered whether the mold may be causing all your various medical issues. You might want to look up sick house syndrome. Are the water pipes in the house copper or lead? Maybe PVC? Lead based paint, asbestos?

Daughter52, I never made those excuses with my siblings. I knew that they all assumed since I was single with no children, living with parents to help dad take care of mom - that it was all my burden. They figured they have a family to support, bills to pay, etc.. so it was not their problem. Family used to cover for me on weekend a year- paid by my work. Until one day, I paid them as usual – and they didn’t come to help dad with bedridden mom in changing her pampers. That’s all we needed – is someone to help dad change her pamper. That was the end of my ‘weekend getaways’. Your comments/ultimatums may fall to deaf ears (like my family did). So, you most likely will need to call around for respite – and pay for it using your mom’s money. Don’t feel bad about using her money. It IS for her care – not for you.

I will be going off-island for 2 weeks. Although teacher niece said that they will help with my dad (her grandpa), I don’t believe her. She was the one who failed to help my dad with grandma’s pampers. So, I have to go to a friend to cover for me. She is willing to spend day/nights here 24/7 babysitting and changing my dad’s pamper – for Free. Of course I’m not going to pay her nothing. I already put aside $300 for her. Knowing her, we will fight over this money – me giving her, she giving it back, etc…. So, I’m putting aside shoes, purses, etc.. as a ‘trade’ which she has NO problem accepting. We will see.

I cleaned the air con (filter with lint and the vents with black mold), the outside refrigerator, the inside/outside of the microwave, and finally the restroom walls (what I can reach and then dragging one of mom’s small thick flower pot, turned it upside down and stood on top to reach higher on the wall). The livingroom no longer smells musty. The Clorox wipes cover the smell of mold – high up on the ceiling. Now, I’m hungry and will eat left over KFC chicken for lunch. After lunch, back to googling earplanes ear plugs and sinus/pressure when flying.

Jude that is good advice you gave to Daughter give them a choice one week off four times a year or she gets placed-sharing the burden is only fair.

Daughter I understand you are tired - who wouldnt be? While I have to say I am not an advocate of lying I might just be tempted to ring one of your siblings and say you are unwell and cannot get out of bed. Then even if you dont get out of bed for the day which is not what you really want at least they will HAVE to care why you sleep or rest or stuff your face with choccy under the bedclothes! So practice your acting skills and get them to take on the load even if you still dont get out get yourself a break from the care xxxx

Alternatively ask them to all come round one evening after mum is in bed and lay it on the line for them. yes I live here free, BUT I am going to leave get myself a job and put Mum into care if you lot DONT recognise how much I actually do. I have spent years saying you all have your own lives etc etc but now I am telling you I MUST have a break and I must have a date for that before you leave tonight or I will find her a care home to free up myself. I am not asking for the world but for 1 week 4 times a year. I dont care how you manage it - you may want to all chip in and send her for respite but I am GOING to have a break

This probably comes under the dysfunctional family thing but.....I am complaining about siblings not stepping up. Sure I live with mom and am her primary caregiver but I am soooooo beyond stress and really need out more than a vacation but here it is the weekend again and very tired of going through the motions and trying to keep mom occupied (she does nothing without prompt). Not one of my siblings who live nearby offer to take her for a weekend to let me have a break. I have been making excuses for them saying they have their own life to contend with but really. I have relief only when I have a medical appointment and I have to beg for that. Truth is, they don't want the burden so they don't offer. Mom is not a joy to take care of and no one wants to give up their day to watch her. Doesn't matter how much I complain that I need a break, there is always an excuse. Not fair.

Dad used to have a great singing voice. He can reach the high pitch. It's so sad. He's singing tonight. His voice is warbling, shaking. He cannot even sing the high pitch. He saw me looking at him. I gave him a big smile, even though inside, I felt so bad for him - seeing another piece of him, going away forever.

Next appointment with my doctor is on May 8. That's like 1 month before my trip.
Veronica, I thought of the wax build up. I was at the pharmacy looking at ear wax removals. But I don't want to Assume I have wax build up and then spend $13.00 for the ear drops. I figured it can wait until the appointment.

Fave niece enrolled me in FaceBook. When I go off-island, my prepaid cell fone will NOT work outside of this island. Since I will be bringing my kindle or iPad, I figured that if there's any flight delays, I will find a free wi-fi and send a message to fave niece. On her next visit with me, I will ask her to give me a tour on using FB. I've already deleted some 'friend request' from people I don't know.

Since I've increased my fluid intake, I've been getting up several times at night to use the restroom. So, I'm more tired than usual lately. Since fave sis came over and babysat dad around 2pm, I hope - so badly - that she will Not visit tomorrow. Entertaining people is so exhausting.

Book if you don't leave the secure area in Tokyo you will probably not be technically in Japan so you should not need to go through customs etc while you wait. Remember Edward Snowdon spent a whole year in the airport in Moscow because he could not enter the country. Check anyway. if you go to the clinic make sure they look in your ears part of the problem could be a wax build up and that is easily fixed.

I'm leaving June 9. The stopover in Denver didn't give me enough connecting time. I have several hours each way in Chicago. I would fly via Honolulu but when the airline did it's takeover, it took the new airplanes for over the water and gave their Old Domestic planes. In the travel business, we have heard from our passengers soooo many mechanical problems. Twice the flight from Honolulu to here, had to detour to another island (military) for emergency landing. Several times, it took off from here, and had to turn back. Just last weekend, one hour before reaching here from Hawaii, they ran out of toilet water.

I usually prefer to fly via Honolulu. But with all these mechanical problems between here and Hawaii, I've decided to fly via Tokyo. At least the plane between Tokyo and Chicago is not the old domestic planes between here and Hawaii and the West Coast.

I'm traveling with baby bro's girlfriend and her 2 daughters to Norfolk. They're flying one way. They will be living with him. Most likely they will get married. I hope I can attend when the time comes. Since I used up my miles for bro's ticket, and he used up his miles for my ticket, I most likely won't be able to go. For now, I'm seated across from them. But, I have plans to move up towards the front. I will pay about $187.00 to be seated on the roomier seats for Tokyo-Chicago and another $187 from Chicago-Tokyo. My legs will need to stretch during the long flight. I will need to print out some leg exercises, check the pharmacy about special stockings/socks for circulation, etc....

The last trip I flew Hawaii to home, my feet was swelling. Painful to walk. But it wasn't so bad as the previous trip because I Googled about leg circulation and started hydrating days before my trip, and avoided anything that would dehydrate me. It worked! The previous trip before Hawaii, to just sit down for 5 minutes, and the pain in my legs were soooo bad. The only way to stop the pain - was to walk, walk, walk. Can't do that between Japan-Chicago. Turbulence! I hate to be in the headline news of the passenger who was not in her seatbelt and hit the ceiling during a sudden turbulence. Later.. time to change his pamper...