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.
Thought are with you and your family.
Every time there's a staff shift in the ER, every single ER doctor would ask us the same questions from the previous ER doctors. Dad's medical history, how did he become bedridden, how long, can he eat solids, what about his untreated prostate, is he a smoker/drinker/drug? on and on. Same questions.
I was wide awake until 230am this morning. That was the last time I saw the clock before I woke up at 6:00am. So, maybe I had a 3 1/2 hr sleep. I was tired and didn't feel like going to the ER. They only allow 1 family member. The rest sits outside the air conditioned building at the designated cement waiting area. It is soooo hot there. The cold bottled water quickly becomes warm in the hot humid weather. We're literally dripping with sweat on our body. Icky..... Sooooo. I wasn't in a hurry to go to the ER. I went to dad's bank & withdrew enough cash to cover all his expenses that I charged. If dad dies, they will freeze his bank accounts - probate. I hope it's enough.
Today, I sat mostly outside the designated cement structure. I didn't go into dad's room because my feet is still aching from yesterday. Fave sis and I sat the whole time in our shift out there. I finally felt bad and decided to go in again.
Dad is bloated. It's such a big difference from yesterday. But he looks more decent, cleaner today than yesterday. Nurse niece (works at the other hospital) dropped by yesterday afternoon to check her grandpa. This morning, fave sis told me what happened. When nurse niece went to visit grandpa, she saw a fly on his mouth. She inspected him. His urine catheter bag was just lying on top of the bed (not hanging on the side bar), with the tubes tangled. She saw so many carelessness with whatever it is you nurses are familiar with. She went up to the nurse's station - in which dad's room is directly across from them, and they can see him unimpeded. She told them that there's a fly on her grandfather's lips. And that is NOT acceptable because he's in critical condition and the fly can... something (fave sis telling the story).. cause infection? She also told them about the catheter is tangled and the urine doesn't seem to be flowing into the bag, etc...
Lastnight, nephew visited his grandfather. This is the nephew who watches my dad on Saturdays until 3pm. He went up to the nurse's station and asked if it's okay that he shave his grandpa. They said no, no. They will do it. Ha! That's why my dad looked cleaner today.
I'm reading all kinds of books on acid reflux because my own has gotten worse. Today, I was just not in the mood for reading it. I decided to sing (out of tune) dad's favorite song: Goodnight, Irene. So, I was standing there, very quietly singing to him (in full view of all the nurses). I saw this nurse come rushing towards dad's room. Oh, no! They're going to chase me back out, again.
The lady rushes up to me. And asks, "Are you a family member?" I said yes. Anddddd... back to the usual questions - medical history, when stroke, solid food, etc..... When she found out that dad was bedridden since 2012, she exclaimed, "Wow! 5 years being bedridden and no bedsores!" She asked me how I do it. (She's not a nurse. She's new shift's ER doctor.)
So, I told her that Dad did have an air mattress but it was one of those bubble ones. And he complained that it (and we both said at the same time) 'hurts'. So, we didn't use the air mattress. I went to Kmart and bought those chair pads. You know the square ones that you put on the chair? She had this amazed look - and she said, like the cushions that pregnant women uses!? .. .(Well, I've never been pregnant, so I don't even know what cushions pregnant women use.).... So I told her that. She said a donut with a hole in it. So, I said, No. The regular square chair cushions that has no holes in it but you tie it to the chair to sit. She was looking at me with wonder.
I.. felt soooo good after this. Imagine. A doctor who looked at me - and how I was able to work around my dad's stubbornness (she called him that) and how I was able to find a way for him not to have a bedsore on his butt for these past 5 years. I'm so proud of myself that I was able to bring amazement from a doctor.
You are awesome, amazing,brave, there just aren't words to describe your dedication.
Try to get enough rest and eat some healthy food during this difficult time. I feel like a hypocrite for just having said that. I know it's almost impossible...but try to take care of yourself too.
I'm still waiting for the $600-some medical transport bill that both Medicare and his secondary insurance denied coverage. I had received a letter from the secondary insurance saying Medicare and them denied coverage due it being a non-emergency use. That dad owes this much to the medical transport.
Is the medical transport for this hospitalization? That was quick. Certainly the docs would write a letter stating it was an emergency. How the heck s one supposed to get a bed bound person to the ER that has pneumonia and high fever? I would certainly appeal that. They did not discharge him.
The cost of the funeral, obit etc should all come out of Dad's money. Withdraw enough now to cover the full estimated costs because the account will probably be frozen for a while when Dad passes. First thing the banks do round here is check the obits in the local paper and freeze the accounts before the bank opens. That's why some people delay publishing the obit and we see few long ones and not many photos.
Lizzy, my loss of appetite is that the hospital cafeteria food is not so great. I felt like I need to put Tabasco on it to make it tasty. I don't want to because of the reflux. And I'm tired of MacD's cheeseburgers. So, I told oldest bro that I'm leaving the hospital early to go home. Secretly, I was going to detour and order a takeout from a restaurant. I bought the salt and pepper pork chop plate that includes 2 scoop of rice. Yummmm. At home, I was eating it like a starving person. Too fast and almost swallowed the food wrong. My stomach was happy.
Kellse, I don't think the sibs would do that option. My oldest brother wants to reach the maximum amount of people. But one never knows. I'll make that suggestion.
I just realized I need to clear the boys and my bedroom, wash the sheets for incoming guests. I've been using the boys bedroom as dad's storage supply room.
Glad you took a break for something that sounds yummy!
Take Care.
Is it Monday soon on the island ??
You are a wonder and hoping you get a little more sleep but please don't tire yourself cleaning house for guests
Also please don't pay any expenses for your sibs - if dad has money to cover then take it out of the bank when it opens
You and fav sis are hanging tough - God bless
Still here for you.
You are doing great!