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 snapped. Older brother was watching me to change bedridden mom's pamper all by myself. Instead of getting up and helping me, he sat there watching. I had to stack pillows on top of mom and behind her back because she was trying to fall back on her back.
Brother said, "You know there's a better way of doing that..."
I immediately stopped, turned to him, looked him straight in the eyes and asked, "Do you want to take over and change her pamper?" His eyes widened, shook his head and did not continue to give me advice. Ha! I wonder why he didn't want to SHOW me that 'better way of doing it' ??? All talk and no action...
Look, I am open to new advice. But when you start it up with that know-it-all attitude, it just irritates me and pisses me off. Fave niece and nurse niece have offered advice about their grandpa - and I accept it - because it's how they deliver it.
But you got it bad. You also have to deal with his religious attitude. Do what I do when my relatives try to get me to do the Catholic thing. (I'm not Catholic.) I simply tell them that I'm not Catholic and I don't feel comfortable doing it. They can do it, just don't mind me.... or to business associates, I say, "I don't celebrate this or that. It goes against my religious beliefs. I'll pass."
Thanks, Vstefan for the prayer. I believe prayers are very powerful if it comes from the heart. Yours was very sincere.
Today, I had an "aha!" moment. I was staring dad as he slept this morning. The house was quiet. He was quiet. So, I was able to do my usual self analysis without distraction. I didn't like the revelation....
Sleeping Issues (!) // Hair Loss (!) // Major Mood Swings (! .. Yes...I've been snapping a lot, depress, etc..) // Pain in the Body (!.. More on this to you all) // Inability to sit Still (!) // Constantly thinking about your Job ( !! )) // Little Patience for Others (!) // Hair Loss ( !!!!! )
I think that from this online article, what really hit me the most was about the Pain in the Body. Capital letters are My Emphasis of what stood out to me while reading the article:
"Usually, people ignore the pain in the body, but it is a Big Mistake, which may indicate a Serious Health Problem. Stress may cause your body to Start Breaking Down, causing Chest Pains, Stomach Issues, Ulcers, Diarrhea, Tense Muscles and Palpitations.
In this case, the Headaches will become Intense, your arthritis will be even more severe, and the whole body will begin to ache. At this point, you should immediately manage stress and do everything you can to lower it and give your body the break it needs."
Ahem...I've been getting the stomach issues last week. Just on Monday, I've been getting severe upper shoulder pains. I think my shoulder muscles are tight. This morning, I used small weights to do some over the shoulder lifts and my muscles felt tight when I was trying to stretch it. ... Also 2 days ago, there is a mysterious sharp pain between my pointer finger and the middle finger of my left hand. I don't feel any lumps, bumps or sores. But it is very very painful, as if the vein or artery is hurting... As I'm typing, my upper right shoulder is throbbing - not of pain - just a throbbing sensation. Odd... And yes, headaches every day, Excedrin every day.... I dont' want to have a nervous breakdown... I don't want to have an anxiety attack... I need to exercise to loosen up my muscles.... I need to go and find some very funny YouTube videos to lighten the load on my shoulders. I need to laugh away my stress.... I realized that I haven't been laughing lately. I'm gong to make it a goal to watch one or 2 funny YouTube videos a day.
Get yourself a "staycation" at a local hotel when you can and enjoy having a day to yourself. For me, it helps so much to take time out, give myself permission to recharge.
And I didn't mean to scare you because, truly, only your unique situation + brain chemistry + genetics (etc) will determine if the anxiety progresses for you. You know, from reading on here, what the symptoms are. There is medication to help, if it does progress into anxiety disorder, so don't worry too much about that... just take more time out for yourself regularly. :-)
Windy, what a coincidence! On that day you wrote about a hotel, I was just daydreaming of doing that while I was at work. I was thinking I needed to go to a hotel and just lay down all day, snacking and reading and napping - in the room. Peace and quiet... The hotels are all booked up because it's Chinese New Year time.
Susan, I realize that I'm burning both ends of the candle. I just don't know how to juggle these things in a way that eases things for me. I'm butting heads with family, with dad, etc... Oldest sis, after 3 years here, is finally buying food for me now. She laughs now, whereas before she was blank-faced. She talks more, too (even if it's very rarely.) I KNOW that she can do more to help me but...
Hai genki desu. Sorry. I was in limbo while trying to figure out the client's situation. She is actually my boss' client. He was off-island and I happened to answer the phone when she called. I didn't know she was ... ditzy (????). She told me several times last week to purchase the 3 non-refundable tickets. I kept asking her if she's sure, etc... She insisted. I gave her until Saturday to change her mind. And I against my gut instincts, I issued it. Immediately after I issued the tickets, alarm bells were gonging loudly in my head. I ignored it. I never, ever learn that I must need to pay attention to my instincts.
Anyway, on Monday, she changed her mind and wanted to use the airline mileage reward to pay for 2 of the tickets (mileage + $151.00 total). When I told her the tickets were non-refundable, she was very, very upset with me. She called me and blamed me for not telling her about the mileage reward option from the beginning. I DID. I kept telling her to look at my very first email to her. I gave her airfare options: Non-refundable ($550 per ticket), Refundable ($655.00per) and Mileage Reward. I told her that's why I kept asking her if she was sure. She kept denying it. I was just soooo upset. It's non-refundable. We cannot refund it and use the mileage reward option.
When I came into work the next morning, Tuesday, she sent an email of apology email. My options were right there from the beginning. I didn't respond back to her because I was still very upset with her.
On Monday, after we hung up on the phone with her very angry, I contacted the airline. I explained the situation and asked if there's any possibility of refunding the non-refundable tickets so that the clients can use their mileage reward instead. The agent said that she will check on this and get back to me. After that, while driving home, I was praying repeatedly to please, please, please let the airline have a heart and waive this one-time to refund the non-refundable tickets. All night, even before going to bed, I continued to pray for a positive outcome.
No word from the airline on Tuesday. Today, I contacted the agent. She said that she will get back to me and see what was decided. Yay!!!!! They approved it! They will refund the non-refundable tickets (without charging a refund penalty or administration fee) if I proceed to book the clients reservation and ticketed on the mileage reward. Success!!!! THAT is off my shoulder....
I called the client and she was just soooo happy. I can hear the giddiness in her voice. Heck, I would be giddy too. I mean, who goes and pays $500-some a night on a hotel reservation for 1 week! That's not yet including the hotel's taxes/fees.
Doko desu ka- ogenki desu ka
Fasting in Jewish law means no food, no water. He's trying to do that for a week?
I took a 1 1/2 hour nap. I think my psyche needed that. It felt almost drug induced with deep sleep and no dreams.
He reports from her visit with her that she is doing really well. She drank coffee, water and wine and even ate quite a bit. I think she is rallying for him being here.
He attributes it to prayer. He is praying that she is completely healed before he jets back to Europe. Great. I need more years of this alone without his help. He's been here twice in 6 years.
I want to knock him in the head. Mom is actively dying. I know he loves her and doesn't want her to die, but to wish she keeps on living beyond his visit seems cruel to me. To her and to me. She is miserable and he thinks she can be miraculously walking again and be actually nice to me is not something I see in the future.
He tells me I do not believe enough. I don't even want that! Sure. I love my mom. She has told me so many times she wants to go home. I believe HER. It's his guilt of being gone for 30 plus years that is motivating him.
He is trying to save her soul. Mom is good for being a Christian. My brother is driving me nuts that her beliefs are not 'good' enough for him.
Out of the frying pan into the fire. Gosh. I somewhat resent having him come here.
He thinks we're Jewish, though I don't think so. Just due to my grandma's maiden name. So he adheres to Jewish tradition. He started fasting on Monday and will not eat until Saturday.
That's fun to be around, especially when you want to make a meal. He almost fainted tonight and caught himself on a chair. I NEED that!
I feel guilty eating around him. This is not good. I feel he is being an a** with his own issues. It makes me uncomfortable in my own home. That is not a good guest. I am mad about that. I have lost 10 pounds in 6 weeks that I could barely afford to lose myself. I tend to not eat when I am stressed.
Anyway. Tomorrow is another day. Regretting my brother being here in a way. I want my own space back. A week is enough. Say your goodbyes and be done.
Don't let anyone do something just because of being too sad and tired that they will feel bad about later - please help people find rest and freedom from feeling guilty and inadequate when they are giving it all they've got and doing the best they know how
God bless us, every one!!
I know you feel obligated to dad, but you need a break, seriously. Just do it and see what happens. It can't get any worse and maybe it will kick someone's back side. If this kills you they will have to take up the slack anyway.
I don't want it to kill you. The stress has to be unbearable. I feel really bad for you. You have my permission to collapse and let someone else take over. I know you don't think so, but someone else will have to figure it out. Seriously. Do they have adult protective services on island?
You have done enough. Time to live woman and take care of your own issues.
IF you cannot see a way to get a break, would you consider taking a low dose SSRI or benzodiazepine? I do NOT like recommending medication as an alternative to changing your lifestyle, but... if you see absolutely No Other Way, then you must keep yourself level and feeling relatively decent, not burnt out. Bad things can happen when we get too close to that edge. I want you to limit the damage you're doing to yourself, by having such a demanding life. You have to find a way to limit the toll on you, or you have to find a way to make yourself capable of meeting the demands. I don't see it as an option for you to continue to run yourself at such a pace -- mentally, emotionally, physically, like you've been doing for so long.
When you have an especially bad day - staring at the screen, brain has given up on coming up with correct answers and actions because it's tired - follow that day up with a day of REST. If you make it a necessity, can you figure a way to put some more rest and down time in your schedule regularly? Just... concerned for you. :-/ (((hugs)))
You're important to us here. Please take care of yourself. Try to find a way to get a break if you can...
I told oldest sis that I want to quit. I want a job that doesn't require too much thinking , involves non-refundable mistakes and thousands of dollars. Heck, my guts was practically screaming on Saturday and I ignored it. That's what I feel so bad about.
Job openings are very hard to find. The ones that would hire will be below the minimum wage without insurance. If I quit my job, I have enough emergency funds to last me one year to find another job. I definitely won't be making what I'm making now- if I want a less stressful job. But I'm not happy with my current job. I'm practically dragging myself to work every day for years.
I was hoping to last another 4 years. Then I will qualify for senior citizen. And I can then take advantage of the free community college courses for senior citizens. I was planning to try something different than receptionist {terrible at it- lost phone messages and misfiled several files} and airline reservations.
I, also, think it's best if my bosses find a new employee who has their own clients. Our business requires that we network in order to bring in new clients. I can't do that because I rarely go to parties, etc... to try to drum up customers. Last year, the business didn't do well at all. Most people are booking their tickets and hotels online.
Stacey, the next time I changed dad's pamper, the black spot disappeared.
I think I will be one of those people that waits until everyone is gone until they die. I am exhausted from all the company these past couple of days, but I stay up until I can have my alone time. For some reason I need that. It helps me to gather my thoughts.
No TV blather in the background, no one else up. My husband and brother were watching 'Game of Thrones'. Not good. They finally went to bed.
No noise. Maybe I can finally unwind enough to go to bed myself. I like quiet right now, actually need it. It is wonderful.
I need to find my own peaceful place and I guess it is staying up later than anyone!
So much anxiety these days. It does give a person a 'buzz' on death watch. I recall it very clearly when my dad died six years ago. Sleep does not come easily.
My FIL is also on hospice and is not doing well. It's double trouble right now. Glad hubs has five sisters and my brother is here.
Just sucky all the way around.
How sad is that? I'm so tired but the silence is so comforting to me.
I'm thinking of you!
Don't let her words hurt you, she's angry and fearful of what's to come, and is lashing out at the one person who it will hurt and effect the most.
Glad your family is here, but don't worry so much about them, they are old enough to order in some food, if they are hungry, and sure don't expect you to do it for them!
The Morphine will relax her, and now that she is hardly eating, she will be a lot more sleepy than normal, I expect.
I know that in the few times that hubby and I get out for an hour here and there, we usually end up talking about my FIL, and we have to try really hard not to do that! I hope this is the beginning, of you and your hubby, getting out more, and letting life take its course for your Mom, especially now that her pain is under better control. At least it will help you to worry less about her.
Never feel like you need to feel guilty, you have been an Amazing daughter, and your Mom knows that! Also, of course you know that she may slip away when you are not there, and that's OK too! You ate a phone call away, and the Nurses are good about notifying you if something is going on, or if the time is close, but some people do like to pass, all by themselves too!
I hope you are getting good rest now Sweetie, as you've been busy these last few days! Take Care!
My screen is all blurry reading your good wishes tonight. I am humbled and grateful for each and every one of you. Thank you so much for being there for me.
My brother and cousin visited with mom today, while my husband and I had our first Sunday "off duty" in years. We went out to lunch and picked up a few groceries and that was about it. Oddly, it wasn't that enjoyable. I felt like I should be with mom during this time. Oh, the guilt.
My cousin's daughters came for a visit to see him and us. They stayed even after my cousin left on his four hour drive back home. My brother is a talker, that's for sure. They didn't leave until 8:30 and we were starving! I didn't want to be impolite and eat without offering them dinner too. Just didn't have the food or the energy to make a meal for five. Would've ordered a pizza or something but I kept expecting them to leave over the course of four hours as it was planned to be a short visit.
My brother said mom had nothing to eat or drink today except a couple of sips of water. He offered to get her anything she would like but she refused. She would not turn off the TV as she just wanted to watch 'Golden Girls' and pretty much ignored them. Sad. :( If that's her comfort though, I say let her be. She is withdrawing from our world.
My brother and I will be back there in the morning. I'll bring my little Jack Russell terrier as she always enjoys seeing him. I'll put Sparky in a chair next to her so she can stroke his soft ears if her arms will work. She calls him Mr. Velvet Ears. Gosh! Writing this is making me tear up. After all the angst I've been through with mom, those bad memories are going away. My only desire now is to comfort her and see her through her last days.
Time for bed. Wishing a good night of rest for all of you!
I would have ended up doing just what you did - if relatives dropped by. But, I like Glad's words - to maybe next time have them/you order take-outs.
Hospice will help your mom with her severe pain. Soon, she will no longer be in pain. Hang in there. {{HUGS}}
Sorry to read about your mom, I am sure it must be very difficult. My mom, too, is on hospice care, has been since mid-October. She is declining quite rapidly now. But, taking her time.
She is in memory care with a 24 hour caregiver. I saw her in October, not November because they were quarantined with an intestinal bug. I will be moving back, two hours away instead of seven. So, will be able to see her more frequently. Very nice that your family is there for support. Let them do that, let them take care of you.
My best to you and your family.
My brother arrived from Germany on Thursday night. It was good to finally have him on board.
We saw mom at 9 Friday and had the hospice appointment at 10. We met with the chaplain, the social worker and the hospice nurse, all in mom's little 85 degree room with my brother and I and mom.
I'm glad I have a little perspective on it now, because that meeting left me feeling really unappreciated and like a piece of junk. She told them that I only visit once a week (!!???!!) and I'm pretty much a weak, worthless person. She only acquiesced to hospice because of me. I'm not strong enough to take care of her on my own.
Since I'm her health care proxy and DPOA, we went to a conference room at her AL to sign papers for hospice without mom's presence. She can't hold a pen anymore. I kind of had a mini-breakdown. I told them I have been doing this on my own for six years with the AL and no other support.
They were very understanding, especially the chaplain, of course! I told them about mom's control tendencies and how difficult it has been. They helped me to recover from mom's words about me.
While I was signing papers, the hospice nurse evaluated mom with my brother present. Her pain level was off the charts, which I knew. That is why I wanted hospice like two weeks ago! The hospice nurse told me they will find a way to help mom's pain.
My cousin and his girls arrived last night. I had a full house of people when I least needed it. Made a full meal for everyone and they stayed until 10 at night. Every fiber of my being wanted to kick everyone out. My mother is dying! I'm not with her at the moment, but I need some rest. It was SO hard.
My brother hasn't been here in almost 3 years so they all want to hang out with him. Today, at least it is my hubs, cousin and brother. No others.
We brought mom over to our house today to
be in a 'real place', not AL as she puts it. She actually ate a couple of teaspoons of cheese my brother brought from Germany.
Hospice has put her on morphine now, which was kind of shocking though it shouldn't be. She has it every four hours to get ahead of the pain.
It's real now. It's kind of hard for me to wrap my mind around it.
My mom is actively dying. She's under 80 pounds, now, just skin and bones.
My brother and cousin will be with her tomorrow to hold her hand. I am taking a mental health day with my husband. If she dies it was meant to be. She won't be alone.
Hmmm... when mom's stomach tube was accidentally pulled out by the caregiver, I didn't have nerve to push it back in. I took her to the ER and got lectured by the ER doctor that I could have done it myself instead of bringing her to the ER.... I see a pattern. I can deal with lots of gross stuff but I seem to freeze if it has anything to do with putting anything inside a human body (gauze packed into the open wound, stomach tube back into her stomach hole.)
Since I have limited experience with bedsores, I am always open to suggestions. And because I'm queasy of bedsores, I do my best on prevention. Time to go now. Change his pamper (takes about 15 minutes), give him his last meal for the day.
The sores on his backside need addressing by the visiting nurse, as bed sores can go bad Really fast! I'm sure you know all this, but I just wanted to remind you Sweetie!
As others have said, You are a Rockstar! But you need some more help, girl! And Yes, time to email your siblings, and set things straight, that you are Burnt Out, and do not want to be his POA, but someone else needs to step up, and assume that position!
I see no reason why a Bank Notary cannot come to the house, to witness him signing the signature cards, that's their job! At , that's how they do it here where I live! After all, the bank does use his money, and does make money off of him, having his account with their bank and all! Stand firm, and force that bank to come up with a viable solution, and not him having to travel in a cabulance at 600 dollars a pop, just to sign a form in their presence!
Ģlad the doll is working, and that your Dad is finding it a soothing source!
Hugs Love! You take care!
FF, my bro has 4 litter boxes in his house for his 2 cats, neither of which have problems getting around, just lazy? And will pee on any level of their multi level home if a box isn't more convenient.
Book, what about salve/ointment to protect against bedsore opening? Can you apply a wet dressing of A&D ointment or Vaseline or something like that? Bedsores aren't considered "skin breakdown" and more "pressure wound," right? I think they're both... but I'm not an expert. The gel pads they make for pressure relief, plus ointment to prevent to prevent skin breakdown...
You know more about bedsores than I do, book. My dad is (was! he's gained 50 lbs in past 2 years!! go caregiver me!!) so skinny, he never had any... that I saw. Love you, sis.