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.
I told her that when dad became bedridden, and I now had 2 bedridden parents, I cried. I put my life on hold thinking a 'few years' and at least I got to do some of my dream. She asked what it is. I said that I wanted to travel. And I chose this job to travel. At least I got to see Korea, Japan, Bali,etc.... I had to stop when dad said he couldn't handle mom by himself. Mom was bedridden for over 13 years. I came home from a trip, and no one came over to help dad change her pamper. She was soaking all day Saturday and Sunday.
I told her that everyone got to marry, have kids and grandkids. I looked at her straight in the eyes. And said, I became suicidal. I already had the date, how to do it, where to do it. And I realized that I needed help. So I sought therapy.
I can see that she's shocked. You see, my brother and his wife makes it sound like they're taking care of mom and dad. That's why a 1st cousin I haven't seen in decades, thought I arrived from the states (because of dad.) He didn't know that I live on island because I don't go to parties, weddings, fiestas, funerals......
It's all going to repeat again. Just like mom's funeral. People will praise bro & SIL for taking good care of dad. Fave sis is worried. She told me not let bro kick me out of dad's house. Hide dad's Will from bro. Uhm... bro is the EXECUTER! Hide the will?! {{{shaking my head}}} oh, my gosh.... mom's death... I soooo dread the coming days. Sigh.... I'm not going to think about that. I'm just going to take it one day at a time...
Aunty did a rosary prayer on dad today after we told her that we chose not to do dialysis and what this means for dad. 2 of my cousins did some kind of prayer to dad yesterday. I'm not Catholic so I don't recall what these prayers are. But it does bring so much relief to Catholics who are close to the end.
With most of my siblings flat broke, how are we going to pay for the funeral? I voted for a small obituary for mom ($600-some). They chose a half-page ($1200.00) When it's time for dad's turn, I'm going to again suggest the cheapest one. I'm positive they will vote for the bigger one. They will choose this, vote on it, and then we will split the cost. Really? I want the cheapest. I don't see why...sigh.. You all get the picture?
Oldest sis told me that he was telling her and all his favorite gov't caregivers who gives him his bedbath that he's very very tired. In the past 2 weeks, I've been massaging his legs because he enjoyed it - after the pain goes away. I kept nagging him that he needs to exercise his legs because when he doesn't move it, it becomes painful when moved. So, I've been massaging his legs daily. Now, I'm feeling so guilty for nagging him about not exercising his legs... I think I'm experiencing the caregiver's guilt. Deep down, I know that I did my best for dad. But, subconsciously, I'm blaming myself. I am soooo tired but .....
I am sure someone will chime in on what the low numbers mean. It must be organ failure. He just plain wore it out.
Any update on dad this morning? Thinking of you.
Is he conscious at all?
Today, the internist asked for me - dad's caregiver. He wanted dad's history (like the ER doctor, like the surgeon, etc...) Was he mobile? No, he absolutely refuses to leave the bed.... Anyway, when dad came in yesterday morning, his kidney test last night was normal. This morning, it dropped to 15 (????) His kidney muscles are deteriorating. But it was normal lastnight and now it's 15. He wanted to know if we wanted to do dialysis on dad. During this whole time, the doctor ignored all my siblings and concentrated on me - since I was dad's caregiver. I told him that I will call all my other sibs because one of them wants to see dad alive (hmmm.... for someone who wants to see dad alive, why is he leaving the mainland next week Tuesday, means arriving here on Wednesday????) I saw the doctor's hesitation. I said that we did this call before - on the DNR - and we came to an immediate decision. I told him reassuringly, don't worry. We will have an answer immediately. And we did. No dialysis.... This means that dad's days are now very limited - tomorrow, Sunday.
Anyway, all my emergency cash is all my tax refunds. I don't use it for shopping but it all goes into my bank account. I don't charge much on my credit cards (5) because I know what I make and don't spend what I cannot pay off. So, 2 of sibs have NO money to buy their tickets. My citicard is my 'emergency card'. To keep it active, I use this card to purchase Amazon ebooks that are $0.99, $1.99, $2.99 only. So, I knew that to suddenly charge $5,000 will alert the credit card company and freeze my account. I called this morning and reached an agent. I explained that my regular charges are and that I wanted to let them know that I will be purchasing tickets on United Airlines' website- totaling about $5,000.00.
He asked me for my password... I don't have a password. ... Yes, ma'am, you do have a password. ... I insisted that I don't. I asked if it's the online password... He said no... I asked is it the password for the ATM?.... He said no. It's my password... I don't have one... So he asked for my cell phone's number and he will send a verification number. I gave him the number (for texting). Nothing. No text message.... He asked if I have another number... I gave him my 2nd cell phone (flip open dinosaur phone in which I soooo hear much better - and my family knows to call me on this fone.) ... No text to 2nd phone. So, we did a conference call with the Agent specialist. She asked me if I have another number. I said that I'm using my home phone to talk to them. So, she told me to hang up and they will do the verification to my landline. Phone rings, I answer - she's on the other line. She says verification verified. Then she hangs up. The agent then asks me what's the verification number. Huh? I don't know. The phone didn't ring for the verification.... The agent told me that numbers that I gave him are... non-existent numbers!!! ..Well.... we hung up.
I told sis that I'm having problem with the citicard. So I will give her my Bank of America credit card. One ticket went through. 2nd ticket was denied. I assumed I had maxed it out (???? really ????) But since I'm at the hospital, I cannot go online - because I swear I have enough for 2 tickets. So, I give her another credit card from another banking institution from Hawaii. It was denied! Huh? .. I'm now becoming suspicious. I told fave sis that I need to go home and make phone calls to these 2 credit card companies.... There was a fraudulent alert on my credit cards!!!!!!!!
I called BOA. He asked for my password... I don't have a password...Yes, ma'am you do.... No. You mean the online password?...No ma'am.... The ATM number?....No ma'am... I don't have a password!!! and then I told him what happened to Citibank and he said that the reason he's asking me about the password was ... because they have a fraudulent alert my account!!! I groaned... and said... I got my checkbook. You look into my PAYMENT history. I will tell you how much each check was written, the amount and the check numbers... He uhm, tried his best not to chuckle. .. He said that he appreciates that offer but ... all he really needs is the last 4 digit of my credit card and the CID number in the back.... I still have one more card - American Express that I need to call. They were closed when I called earlier. When I'm done, I will call the Citicard and see if we can verify me some other way. I now am a fraudulent person... I cannot verify me because my 2 cell phones AND my home landline number are Non-Existent phone numbers....
Thinking of you and your family. Book, you have done so much for your mom and dad for so many years. No one here even comes close. Be proud of what you have done and you will always have that.
I have missed seeing you about. Thinking of you and hope all goes as well as it possibly can.
So much to cope with - we're thinking of you
You are strong
Ki o tsukete kudasai
Your Dad's consistent actions throughout his illness has been to refuse medical care.
If questioned, you can truthfully state that.
It appears that you are following Dad's wishes in truth.
That is in my opinion, and is not an expert opinion, but meant to reassure you that you have done the right thing for your Dad's comfort.
So sorry your Dad is having this crisis.
My thoughts are with you during this difficult time.
You sound brave.
Glad that sis is there with you.
Sometimes airlines have "compassionate fares" for family members who are flying due to an emergency....
Your dad wouldn't sign a HIPAA form for any of you could be informed of his condition ( not PoA, there's a difference)?
2 of my sibs from the states are trying to fly back home...that's a $3500.00 ticket for one person! 3 days advance purchase is cheaper. Well, midnight time. I need to go sleep. Oldest sis and I have morning shift at the hospital.
By the way, I also found out that the ER called the surgeon to see if dad can have surgery because there's blood coming out of the intube thingy attached to his mouth. He's bleeding inside, maybe the stomach. We were not informed that the ER was going to do this surgery.... Surgeon won't do it...
This was the running theme all day today. The attending ER doctor would check on dad but no updates to us, the family. I tried and tried to explain to my sibs that this has been happening even when mom was alive. As long as I had no POA for mom and dad, they never really told me anything. Sibs were upset. I wasn't.