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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F FrazzledMama Sep 2018 · Answer 1 · 2018-09-01T07:54:12.000-0400

Book, I'm not Catholic, but some of my cousins are, and I've been a handful of times to Mass for events like funerals, weddings, etc. I remember as a teen the first time I visited my cousin's church, and not being familiar with the traditions, not knowing when to stand or kneel, etc. so I mostly just sat. I do remember telling my cousin that I really liked her church because "it was so comfortable, especially the foot rests." I had no clue still that they were kneelers, I just thought people were kneeling down on the foot rests. Facepalm!

I meant no disrespect either, I just sincerely didn't know. Looking back, I do remember everyone being welcoming, and no one looked offended, thank goodness.

G gladimhere Sep 2018 · Answer 2 · 2018-09-01T07:02:42.000-0400

Book, the kneeling and all the up and down in that church is too much for many people, even young people. It is not disrespectful. You have your beliefs, they have theirs. Think of it that there are many practices and traditions of your own beliefs and culture that many of us do not understand, and we do not disrespect you for them.

A story about that church. When I was in elementary school there were neighbors across the street of that religion. They had a daughter about my age and we were close friends. The family invited me to go to church with them a few times. And only a few times because every time I went with them I passed out. I can only guess from all the up and down. It is a lot even for the young.

B bookluvr Sep 2018 · Answer 3 · 2018-09-01T05:12:50.000-0400

MsMadge, that's the first time I've heard it said that way. I'm more like: I went to sleep with a headache. And I woke up with a headache. All day, all night.. Stress? Heat? High blood pressure? .. stress...

I was talking to fave sis on the phone. I was going to my cousin's mass and rosary tonight. But I told sis that lately, I've been feeling very uncomfortable attending Catholic mass and not participate (standing, sitting, kneeling, standing, etc...) Even by sitting on the way back pew, I feel very, very disrespectful to their religion. The feeling came back strong when I attended my cousin's mass 2 nights ago. I want to be there for the family but my conscience is bothering me a lot... I didn't go tonight.

B bookluvr Sep 2018 · Answer 4 · 2018-09-01T05:00:35.000-0400

Gersh, I haven't cried yet. I get the small tears but not the deep sorrowful cries. It took me 18 months after my mom passed away to finally cry my heart out. I haven't done it with dad.

Smeshque, it's those unexpected tears or emotions that just trips me. I think what threw me off was she was Dad's home care nurse. I was shocked that the office didn't even let her know that one of her patients died. And so when she kept asking me how was my dad, with a big smile on her face, I was … flummoxed. {hehehe... always wanted to try using that word.} I didn't know how to respond. sigh.....

M MsMadge Aug 2018 · Answer 5 · 2018-08-31T11:32:05.000-0400

I woke up with the same headache I went to sleep with last night

A anonymous829448 Aug 2018 · Answer 6 · 2018-08-31T07:20:00.000-0400

I try try to avoid potential negative issues as much as possible. Think of things to make me laugh and try to get laughter out of others 😆 via in person, text or phone with friends or people know or don’t know. Try to do it as many times as possible in the day and you don’t how you got to that discussion half the time. Then either there gonna tell you something and make you laugh or pause woe and start thinking what they said is positive and pass on.
Ex. This is True. I don’t know how I brought up a subject to the person that does ac maintenance on my ac. I live on East Coast in va outside dc and md. I may have said something to along the lines of I need a super hero now to take care me mentally. It wasn’t Superman, Batman. It was Wonder Woman and his response. Yeah we take care of Linda Carters ac and he went on and on description of rooms in house and one room wall to wall of pictures of her as Wonder Woman.
Yeah, so when in stress think of positive funny things. Yeah, like I can cry out Wonder Woman please help me and your also local too. Only that would come are neighbors dogs and know I’m loved and get wet slush kiss on cheek. At least I know I’m appreciated and laugh 😂.

S smeshque Aug 2018 · Answer 7 · 2018-08-31T00:00:17.000-0400

Big Hug Book- I too miss my Dad and there are moments that trigger some crocodile tears.

G Gershun Aug 2018 · Answer 8 · 2018-08-30T08:35:07.000-0400

Book, you cry big gigantic tears if you want. I wish I could cry more. Sometimes I feel like one of those people who cuts themselves just to get their feelings out. I've been in big denial since my Mom died. Still haven't come to terms with it. I wonder if I will ever let myself. I won't resort to cutting but if someone wants to punch me upside the head I might welcome it. Anything to get the emotions flowing in a healthy sort of way.

((((Hugs)))) to you Book

B bookluvr Aug 2018 · Answer 9 · 2018-08-30T06:53:04.000-0400

Lastnight, I was shopping at Kmart. I heard someone ask, "How's your dad?" I ignored her because no one called my name. I continued walking and turned right to an aisle (searching for mothballs.) And I heard the question again, "How's your dad?" I don't know why I decided to stop and look behind me. It was my dad's home care nurse. I stood there staring at her. I .. just didn't know how to answer her. She smiled and asked again, "How's your dad?" I said, "oh, he passed away. Last July." And I just stood there staring at her. She let go off the cart, and gave me a huge long hug. I just stood there. She looked at me. I looked at her. I finally nodded.... I got all emotional after she left. I realized that I've been keeping everything inside. Her hug - triggered some of those emotions.

Lastnight, around 11:30pm, I decided to check my cellphone. Fave sis texted me at 3pm, that our first cousin passed away the night before. He had health issues and was in constant pain for years. I went to his mass and then the rosary afterwards. It was a very small church. The priest would say my cousin's name throughout the mass. That is so touching (compared to my parents' church which is like 5 times bigger and less personal.)… The rosary got to me. I started thinking of my dad. I got teary-eyed.... and now, I feel so sad. Did a teeny tiny bit of crying as I was typing this.

B bookluvr Aug 2018 · Answer 10 · 2018-08-26T07:11:26.000-0400

I read something on FB that I thought rings true with my point of view. When I was in the middle of caregiving, full-on stress level, etc... I had the reverse reaction of the encouragements to me to take care of myself because who will be there for my parent(s) if something happened to me. At that time, I was always at the edge of the cliff - whether of suicide or deep depression. That or the feeling of drowning from everything...
The vacation was very difficult for me but I did lots of crying.

This is my encouragement to You caregivers (courtesy of FB):
Take care of yourself.
Go for a walk, eat your favorite food, get a haircut,
read a book, take a vacation,
have a drink, cry if you need to,
Do what You need to do.
Take care of yourself,
because at the end of the day,
You're All You've Got.

G golden23 Aug 2018 · Answer 11 · 2018-08-22T11:50:55.000-0400

(((((hugs))))) chdottir - I know the feeling.

C chdottir Aug 2018 · Answer 12 · 2018-08-21T23:27:22.000-0400

Just feeling generally sad about my Mom. She is in a lovely A/L apartment, with lots of available activities. But she sits alone in her room, except for meals and visits from her kids. Our phone conversations are getting shorter because she really can't tell me anything about what is going on in her life - she can't remember. So it is really all on me to keep the conversation going. And my life is pretty boring right now trying to deal with frequent migraines, so I don't have much to say either.

I feel sad that her dementia has taken away her initiative, her memory. She lost my Dad a couple years ago, and that was the focus of her social world, so she doesn't have him either.

I'm a "fixer" and I can't fix this. I don't feel guilt, I know I've done and am doing my best. I'm just sad for Mom.

A anonymous439773 Aug 2018 · Answer 13 · 2018-08-17T21:42:39.000-0400

I go to the ophthalmologist next Tuesday. I was supposed to have cataract surgery and start Eyelea treatments for macular degeneration. Then a pile of other stuff happened. My eyes are getting bad and I have to get this done. And I need to get Eyelea treatments started. I don’t want to end up blind. Aging is not a pleasant experience - can’t imagine how I’ll feel at 80 if I make it that long. I saw the nutritionist today. Not many changes. Just a few tweaks.

P pamzimmrrt Aug 2018 · Answer 14 · 2018-08-15T18:34:05.000-0400

Took mom back to the eye surgeon today,, it looks good, so her next apt is Fri.. that means I get a full day OFF!! I am getting my hair done.. yeah me! One of my BFFs came over with a pizza for lunch for all of us, and we visited for a while, She is going through a tough time with a hubs with Lewy Body. Then hubs and I went to Wal Mart.. funny how the little things seem so wonderful when we are stressed to the max. So today I had a good day! Hope you all did too.

G gladimhere Aug 2018 · Answer 15 · 2018-08-15T08:18:29.000-0400

I would think visitors can stay home while host isn't home, but I don't know for sure.

B bookluvr Aug 2018 · Answer 16 · 2018-08-15T06:18:12.000-0400

Glad, the first and last time I went to the Springs, baby sister told me that maybe my next visit, to visit my other family in the states. I felt bad because older sis and I get along great. Same sister that I used my mileage reward to buy her ticket to meet me in Hawaii for my cancer scare. Same sister that I will be joining in a cruise next year. I have thought of going to the Springs but I keep recalling baby sis telling me to check out my other sibs. Maybe my visit was a hardship for older sis.

Fave niece wants to take me to the pumpkin patch when I visit them in October. I told her that I don't think so because the smell of mango blossoms, freshly mowed lawn, etc.. gives me a headache and then my airway closes. I start choking and can't breathe air in. Both nieces and my sister said that I should go to the doctor and get an Rx for it - so that I can go to the pumpkin patch. I don't want an allergy attack that might hospitalize me in Texas - where I have no insurance coverage. Plus, it would make my 24-hour flying back home a really terrible experience..

Can a visitor in a military housing stay home while the military family goes to the pumpkin patch event? I don't want to suggest this and get her in trouble. But I don't want to go the pumpkin patch and have hay fever attack. By the way, even smelling the mowed lawn through the air conditioner vent in the car - I still start choking. I have to not breath in as long as I can until I pass the freshly mowed lawn. That's how bad it is with just a mowed lawn. Two doctors said that I'm not asthmatic.

G gladimhere Aug 2018 · Answer 17 · 2018-08-14T20:39:27.000-0400

A very pleasant 71 now, down to 59 overnight. Great sleeping weather. Book, maybe you should go to the Springs instead of Texas.;)

M MsMadge Aug 2018 · Answer 18 · 2018-08-14T11:40:28.000-0400

Oh Book,
you must be exhausted

B bookluvr Aug 2018 · Answer 19 · 2018-08-14T06:21:28.000-0400

MsMadge, for the past 2 nights, I've been waking up soaking wet from sweat. Bedding, clothes and pillow were wet. I have 3 fans (2 are minis) aimed at me. I only have 1 bedroom window that doesn't have the typhoon shutters on. It's routine to get off the bed, change everything and go back to sleep with dry clothing and sheets.

I'm glad that your area is cooling off a bit. I'm jealous! =)

M MsMadge Aug 2018 · Answer 20 · 2018-08-14T02:56:26.000-0400

Dare I say that it's a bit cooler and I might not have to sleep with fans blowing on me all night

B bookluvr Aug 2018 · Answer 21 · 2018-08-12T10:18:56.000-0400

I'm trying to clear my iPad's photos to make space for when I visit niece in October. I have photos since I visited my brother in 2015, my dad's viewing, funeral, to current. I have like 928 photos (been whittling it down throughout the years.) I transferred it to the laptop. I spent like 4 hrs today transferring one-by-one to the CD because I didn't want to send All the photos. Only the ones that I like. At 4pm, my laptop froze. I waited for it to unfreeze for 30min. Finally, I did what my work IT has told me to never do. I did a hard shut down. Turned it on. Oops.. that doesn't look good. So I did a hard shut down...Turned it on... oohhh... Anyway, needless to say, I kept rebooting my laptop. I lost all those photos that I did Not transfer to the CD. So, I spent another 8 hrs transferring photos. I stopped at the end of 2017.

Once I transferred everything to the CDs, I will then transfer from the CDs to the flash drives so that I have 2 hard copies from different media. Yes, I also have it stored on the iPad iCloud, too. And I've emailed the photos from my iPad to myself. Maybe overkill?

B bookluvr Aug 2018 · Answer 22 · 2018-08-09T08:18:14.000-0400

Pam, I learned the hard way with dad, to not give him open options. Because most likely, like 99% of the time, he chooses what I don't want. I learned to be firm and gave him 2-3 options... that I can live with. What's the use giving an option if we're going to say, "Nope, not that one." Sometimes, we just need to be Firm (note, I didn't see bossy.) Right? We're being firm. =)

P pamzimmrrt Aug 2018 · Answer 23 · 2018-08-08T18:16:00.000-0400

Saw the eye surgeon today,, after about 5 eye drops and exams and such she still has the stent, did not damage anything in the fall except her pride ( and she has two whopping shiners) and has a big old infection. So back to the antibiotic eye drops, back to dr on Fri ( Go hubs.. ) She does have a bit of a "spongy" spot over the stent,, he is hopeful that the antibiotics will help with that or she may need a bit more surgery to make a flap. But she really had herself convinced she might lose her eye?? She was almost crying when he said it looked pretty good except for the infection. On the way home we stopped and got her glasses bent back into shape.. so she is feeling better. And last night when I got home Hubs said she ate well all day ( for her) and she made it a point to tell me she only had one glass of wine. We had a talk,, see how long the good behavior lasts.. I have become a bit of a bossy gal today

B bookluvr Aug 2018 · Answer 24 · 2018-08-07T10:49:01.000-0400

Today, I asked for vacation leave from Oct 12-27th - 11 working days off. It takes me 24 hours to fly to El Paso. It will take my 2 full days (leave Saturday morning 7:00am) and arrive home on Sunday night at 11:00pm. I go to work on Monday. I just purchased my airline ticket using the gift certificate from my boss. He even paid for the taxes. He also offered to pay for my Economy Plus seats on the long flight between Japan and the US mainland. That's about $400.00 roundtrip just for seats in the front row with leg room.

As for the cruise for next year May. When my niece asked for the payment, I realized that I really don't want to go. I have never cared for cruises. But. I have never been to one. I mustn't let my fear of water and my vertigo prevent me from going. I will use my mileage reward to purchase my ticket to Hawaii.

B bookluvr Aug 2018 · Answer 25 · 2018-08-07T09:31:39.000-0400

Pam, kind of scary, isn't it? Her falling down. My dad was doing that frequently. I just shrugged it as 'old age' since he was in his mid-80s. Just keep an eye on your aunty for other signs. I had noticed that my dad was having problems gripping when we were changing mom's pamper. He would try to grab the lifter sheet. His fingers were moving but it wasn't grabbing the sheet. Only after he had a stroke, did the nurse tell me that was also another sign of a stroke. I assumed it was old age. But it wasn't.

Yep, it will look like you gave her that shiner.

P pamzimmrrt Aug 2018 · Answer 26 · 2018-08-06T21:21:42.000-0400

Today when I came home from work, mom's sister called.Hubs put her on speaker phone, and mom was not really answering some of the questions right. I am guessing she had her "2" glasses of wine, and not a lot of food , she gets loopy sometimes. Hubs said she had a spoonful of bean salad, and was eating about 1/4 cup of creamed corn when I got home ( she is obsessed with being "fat") So of course the wine goes to her head.. so we got her upstairs to get ready for bed.. apparently she fell on her face in the bathroom, I heard something so we went up and she was in bed.. a cut on the bridge of her nose and "road rash" on her forehead. She already has a black eye from her recent eye surgery ( having hubs call Dr tomorrow to get her in on Wed) because it is weeping again and really hurting her. Yep, she is going to have a shiner . I talk to her about the wine and no food, and her multiple meds and no food.. so she'll be good for a few days... I get that she is 88 and miserable.. but this is wearing on me. She is otherwise OK tonight,, nothing broken ( this time), so hopefully she'll be OK but bruised tomorrow. The last time she fell was in the shower, trying to pick up the shower mat while standing on it. That's 2 this past 4 months,, I can only imagine what's next. Meanwhile its going to look like I beat her up.. Her Dr said its OK to have 2 glasses of wine.. guess we're going to have to work on this harder. She is complete DNR, etc... so I can't make her go to ER when this stuff happens, and she is still "with it" as far as DR is concerned.. and so it goes.. and it sucks

B bookluvr Jul 2018 · Answer 27 · 2018-07-30T10:22:26.000-0400

I just received text msg from SIL that my aunty, mom's sister, has cancer. This aunty sang the funeral death song for my mom and dad. I asked her if she blamed me that my mom died within a year after my taking over her care (dad had a stroke and became bedridden, too.) She said no and gave me a great big hug.

She's leaving island on Wednesday to Washington state where her oldest daughter lives - for treatment. I couldn't find a blank card to give to her. (Need to put on my shopping list to buy several blank cards.) She gave me money for my mom and dad's funeral. It's my turn to reciprocate at her time of need.

The half-empty-glass me doesn't think she's going to make it. On July 21st, she was in constant pain in the stomach area. It took the physician 10 days to diagnose her with cancer. She's elderly.... And my 10 year old niece died of cancer... my 1st cousin just passed away from cancer a few months ago... I sooo hope my pessimism is wrong! I'm going to add her to my prayer tonight. and every night - that I remember to pray... Praying is such a struggle for me...

B bookluvr Jul 2018 · Answer 28 · 2018-07-30T07:55:56.000-0400

Hi Val. It's nice when those in the professional fields remember to acknowledge us and ask how we're feeling. It would be even so much nicer if they didn't just accept the social answer, "I'm fine.". I remember how it always touches me when the visiting nurse would turn to me, look me in the eye, and ask, "How are you doing?" When I say the usual fine, they would give me that 'look' which makes me know that they know it's not really 'fine.' .. If that makes sense. Anyway, they can't really dig out the true answer since they were really there for my parents...

V Val3rie Jul 2018 · Answer 29 · 2018-07-30T07:00:48.000-0400

While taking my husband to his psychologist last week, the doctor asked me HOW was I doing?
She recognized that while my DH may be off and depressed and have many issues, that unless I was feeling somewhat ok,...it was going to be a mess.

This is the first time any professional has asked that. Otherwise I just get looks.

This morning I awakened at 3AM and wondered if this was how it was going to be the rest of my DH's life.
His spiral down and my trying to stop the crash and burn scenario.

I make my check list for the day.
And then I figure out how to take some time for me.

B bookluvr Jul 2018 · Answer 30 · 2018-07-16T06:59:21.000-0400

Oh! a small story. In my observations of mom and dad's nightly Mass of Intentions after they passed away, and I attended the mass... I found it very, very, very...Very! strange how the priest(s) would do the mass. At the ending, they walk down the aisle and exit the church. When I come out with the worshippers, the priest(s) are gone!.. I'm just not used to that. So many times, I wanted to thank the priest for an enjoyable sermon. But he's not there when I came out.

This past Saturday, after the priest walked out of the church, I was surprised to see him standing there facing the door. Fave sis' hubby was in front of me, then sis. BIL immediately went to the priest, bowed and did something to the priest's extended hand (opened but palm facing down.) Fave sis pretended she didn't see the priest (ha! can't miss him standing squarely in the middle of the doors) and walked off to the side.

The priest then looked at me. Oh! Oh! I'm not Catholic. I cannot and will not call him "Father." I will not bend down and do whatever it is my BIL did with the priest's extended hand. So, I smiled at the priest, walked confidently up to him, reached for his extended hand and gently shook his hand up and down - at the same time, while looking at his eyes, I said, "I enjoyed your sermon." He quickly recovered and thanked me.

Then to the next person (lay priest??) beside the priest. He, too, had his right hand extended. But I think he saw me shake the priest's hand because he was expecting me to do that with him, too. =) .. (oh my gosh! Soooo embarrassing.. As I'm typing this, I can feel my face turning red!)

The Caregiver... How are YOU doing today?

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