The niggling things that add up

M1

no wonder we are all tired. I play a constant juggling game in my mind that wears me out before I get anything done. I need to get the oil changed in the car, the time to do that is before a MC visit, since it’s on the way (but it’s 45 minutes each way). So scheduled it for this morning, but then the cleaners called and wanted to come this morning. Okay, I can leave the door unlocked for them but have to put the dog up, because he’ll open the door if I leave him out and the house unlocked. So leave him in the garage but worry that he’ll scratch the hell out of everything because he wants out. Do I get rid of the dog? I want to, she was the animal lover, not me so much, but then I feel so guilty even thinking about that because he’s a last vestige of our life together. So now I wonder if I should run back home after the oil change, cause it’s a long time to leave him in the garage all day, but then I won’t make it to MC in time for lunch, which she enjoys so much if I’m there. And I need to go, because there was a problem with an agency nurse on Sunday who didn’t give her her medicine on time.

See? I’ve made myself tired just thinking about it. Every day is like that. I want NO responsibility. I want to not have to be on my guard all the darn time.

Kat63

I totally get this. I recently needed to have the oil changed for the car also and can no longer take my DH with me because he doesn’t do well with sitting there waiting. I made an appointment a few weeks ago, set up a caregiver to come to stay with DH, but medical issue came up with her, so last minute had to cancel the oil change and then rescheduled everything a couple of weeks later because had another appointment set for the next week, as try to just have care giver once a week if possible. So something that should be simple to do, is now not simple. You have too many things happening at once which is hard. It’s ok to say no, as maybe not letting them clean today??

JeriLynn66

My father-in-law passed away 10 days ago. That part is over. Now, dealing with all the paper. It's endless. I too just want to be DONE. But his ashes will have to reside with me until I can get him to Arlington National Cemetery. Why? Because I would feel guilty to leave his cremains at the funeral home.

Quilting brings calm

@M1

Exactly. My thoughts are running along the same lines today. Had to make an unexpected trip to the AL yesterday because Mom said her oxygen tube was broken. I told her to push her pendant for the staff. When I got there everything was fine with her oxygen.

However there was an issue with another resident who kept coming over to our table. ( we were working on a puzzle in the activity room- long story about the puzzle). The resident was wasted on pot, appears to have dementia, kept complaining he called an ambulance that wasn’t showing up. Then he’d wander off and return- repeatedly. I called a staff member to deal with that. Mom was unnerved and I finally escorted her back to her room and left.
Today I’m trying to deal with the out of state bank to get my late step-dads account transferred over to the joint account per the will etc. They aren’t making it simple. Then I have a doctor appointment and my spouse has a PT appointment.

trottingalong

my mind is a 24/7 juggling game. The perfect description. I wake up tired and wish I could shut my brain off for just one day. I hope you have a nice lunch with your partner.

harshedbuzz

It's exhausting just reading about it all. Some days feel like that old Ed Sullivan act where they used to spin plates on sticks for some reason. Or in the parlance of the youngs? I don't have spoons for that today.

Pulling up a chair. My rational niece is in Switzerland for work and asked me to remind my mom to check in with my challenging one who is in the hospital again. I think she has pneumonia and I heard something about blood clots; she's HIV+ and on suboxone to treat addiction. She is not firing on all cylinders and mom is currently being evaluated for memory loss. Mom decided to volunteer to get niece's cats spayed and neutered to prevent another unplanned litter. Somehow, I became the designation frontal lobe on this endeavor.

So far, the driver to whom I was hoping to turf this project is struggling to liaise between mom and niece as niece replied to one text about meeting her cat sitter to pick up said cats saying "Thanks for cleaning my apartment for me". Mom called to tell me that the male cat actually belongs to the cat sitter who is an ex-boyfriend. I don't want to risk neutering some stranger's cat, so I need contact information and his OK which the driver can't get.

Mom's driver, a family friend, brought up mom's uptick in confusion and said she is routinely calling my niece by my late sister's and my first names. I had been feeling as if maybe I was over-reacting to mom's memory lapses, so it was oddly reassuring to have someone bring it up. Mom likely had Lyme Disease and was treated, but it's not made a difference. MRI on Thursday and then we wait an estimated 8 months for a memory center appointment.

Running in the background a son on spectrum I'm trying to launch into adulthood, a friend facing big surgery and some procedures for me down the line.

HB

Quilting brings calm

@harshedbuzz

Wow, just wow. It’s enough to send you back to bed, isn’t it? Even without the extra cat stuff- which probably has you going ‘ now, just what now / you want me to do what???’.

ButterflyWings

"I am the designated frontal lobe" on ALL endeavors… HB nailed it. And since it has been this way 24/7 for 6 years or so, M1 is right about the exhaustion factor. No wonder many caregivers do not survive their PWD LOs.

Sobering. Trying to ignore the clutter and missed appointments or calls since I just can't keep up with him and everything else too. I have dropped the ball on so many things it is depressing, but also necessary for me to survive. I hope you all have a moment to rest today, and some peace of mind that we are doing the best we can.

Kibbee

@harshedbuzz "I am the designated frontal lobe." Love it, you absolutely nailed it. I never thought of it that way but the description is right on target for me, as DH's current neurocognitive deficits are the downstream effects of a right frontal lobectomy, plus chemo and brain radiation, that he had over 25 years ago for treatment of brain cancer.

I want to get your words printed on a T-shirt, as sort of a laugh so you don't cry kind of thing.

trottingalong

https://alzconnected.org/discussion/comment/210847#Comment_210847

oh my, you truly fall into the overwhelmed category. I would probably be bald from pulling my hair out if I lived in your shoes. I hope in all this mess you find time here and there for yourself.

concerned_sister

Re dog in the garage (I realize this was an example and not the point), can you get one of those dog kennel cages so that the dog is contained when in the garage?

wose

”Dropped the Ball” So true @ButterflyWings . The endless lists and clutter has pretty much scrambled my mind. I probably should be benched, I dropped the ball so much lately. My DH even told me he can take over the bills again 🙃NOOO!!! Lord help us all🥱💜

harshedbuzz

And I hit a car in the parking lot at Target and my victim took almost an hour to emerge with a single plastic storage box. She was justifiably upset, poor thing.

I was there to buy a bottom sheet for mom since hers ripped and the rest of the set is fine. I offered to order on the app last night for delivery but she didn't want to answer the door.

On the way home while DS was chattering away to make me feel better, he got so loud it set of the Noise app on my Apple Watch.

Heading off to report to the claims department.

HB

ThisLife

What a timely post. Captured the feelings of the day. Designated frontal lobe, dropping the ball. I want to get off the Merry-go-round. Holiday weekend so two days without mail! I hate the mail right now. It's an Oh Lord. what now? thing.

Quilting brings calm

We are all just doing so well, aren’t we? I have been sitting at home now for a couple hours doing nothing when I should be doing something. My list of things I should be doing never gets smaller.
In addition to my earlier post, there’s lots of stuff. One-Like M1, we’ve got a car in desperate need of an oil change. I found that out when I was trying to figure out why the map and courtesy lights wouldn’t shut off last night ( still don’t know).

HB- the car accident often seems to happen on a day when the stress limit has been extremely over-reached. Hopefully it’s not a major ordeal on your end.

M1

Yes so sorry to hear this HB. When it rains, it pours.

Happy to report I made it to lunch just a few minutes late (3.5 hours in the car shop, needed new brake pads and rotors too $$), am very glad I went because she wasn't leaving her room and was shaky, she was so hungry and in pain. I think I am going to have to go most days for the midday meal, if i can. Sigh. We seem to be entering another decline, which is inevitable, but it's pitiful to see her so sad and crying for me.

And the dog survived seven hours in the garage without tearing anything up that I have found yet. He can open the house doors, smart thing, so I have to block them off.

Now i should really make use of the remaining daylight and clean the chicken house, but I'm pretty sure it's not going to happen.

We ARE all doing the best we can. That's the bottom line. We are more inclined to give each other grace then we are ourselves, I know this.

Hope5757

Jumping in also.

@harshedbuzz - you have had a rotten day! Like the others, I appreciate your “frontal lobe” analogy.

@M1 - would a family member take the dog? Her nephew maybe? That way the connection is still there, but the responsibility is not.

@Quilting brings calm - we too are struggling with the need for oxygen versus the ability to maintain consistent use. I spend a lot of time watching, aiding and monitoring MIL to make sure the oxygen tubing isn’t being used as worry beads, head band or necklace.

The hospice coordinator came today and MIL was officially accepted. Admitting nurse is coming tomorrow to go over the forms and get signatures from DH (POA). The visit wasn’t drama free. Coordinator had that hard to describe but unmistakable air of condescension about her. Both MIL and DH found her off putting. But we are going forward.

MIL is pretty offended that I won’t continue caring for her 24/7. It’s interesting watching her be outraged but not able to express her outrage. She’s had a rally/recovery and is back to eating normal portions. I wouldn’t be surprised if she has gained a pound or two.

M1

That's really good news Hope.

Her (great) nephew of whom she is so fond just moved to Oregon at the first of the month. I don't think this has registered with her and i don't bring it up. She really doesn't have any other family here, and there really isn't anyone to take the dog, sadly. He was a rescue to us in 2019 from a bad situation and I don't think i can bring myself to put him through more trauma. And he's a beautiful, smart, but needy boy. I have such mixed feelings, he is company on this big farm and a decent watchdog who will alert me (and then run away). There are many days when he literally is the only creature i talk to. But having to travel such a long way several days a week leaves him on his own more than he should be. By attrition I'm down to one indoor cat, this dog, and two chickens who are probably in their last laying year. But I'm very aware that even these are responsibilities i don't want any longer. I fantasize about stage 8 and selling this farm, but it's only a fantasy at this point and thinking about it doesn't make having to wait for it any easier.

thiaatx

https://alzconnected.org/discussion/69367/the-niggling-things-that-add-up

I agree with you totally. I ordered groceries to be delivered. What day and time should I pick. If I pick today, they will come tonight and will that be before his bedtime routine? If I do it tomorrow it has to after I go to the Dr or after his Dr appt at 1p. Juat stuff like this all the time.

Anna2022

OMG, this is my life today. The dog has been scratching a lot (not fleas) but probably allergies but he is clearly miserable and he's scratched thru fur into the skin. No vet appointments for days. It felt overwhelming! I searched far and wide in the house for the dreaded cone and medicated shampoo. I finally found them both, and my mood improved drastically! Truly, I was about to panic.

@harshedbuzz I love the phrase "designated frontal lobe!" Genius.

@M1 - We are not as far along on this journey as you and your partner but I confess that I think about life afterwards, and I plan to not get another dog or another husband. I understand!!

Quilting brings calm

OMG. Mom called me because her remotes are not working … again. She thinks her spare batteries are all old. I asked her if she had them in right - they each take two batteries and the plus signs both go on the top for some reason. The last time they didn’t work( a week ago), it was because she had the batteries in wrong. There’s obviously a reason that both remotes( two TVs) quit working at the same time. They probably are on the wrong rooms. She asked if I was coming out there tonight. It’s 7:35PM. I’m in my pajamas. It’s a 35 minute trip each way. I told her no and she was offended.

Like HB, I am the designated frontal lobe. Like M1, I’m tired of being the responsible party.

HangingIn

OMG, I am so with you!  We are also not as far along as many of you, but I can’t tell you how frustrated and exhausted I am with being The Person Responsible For Everything.

I guess it’s a good thing that I’m a control freak anyway and fairly well organized.  I have a binder called “Things We Need To Know” in which I outline all the required tasks (with instructions on how to perform those tasks if necessary) and group them by whichever month they need to be done.  But I find that the binder is really just hitting the high spots.  Nearly every day, something comes up that I’m not prepared for, and I have to figure out how and when to get it successfully accomplished.  Today it was trying to fix the lawn mower that went belly-up, and calling the small engine repair guy when I found it to be a more complicated repair than I could manage.

I, like all of us, am so tired.

fmb

I'm trying to line up transportation for five appointments for cataract surgery between now and July 2. Have to get the surgery done while DH is still alive and I have DH's insurance. Throw in a dentist appointment and mandatory state car inspection, running for gas, groceries, etc. and seeing DH as often as I can, and I am completely worn out.

@harshedbuzz, wrecking the car is one of my worst nightmares. Hope everything works out okay. I have often used the "spinning plates" analogy to describe my life the past year. Designated frontal lobe, indeed! I expect it with DH, but I'm having to do the thinking for some of the AL facility staff regarding his care, too. SMH!

@M1 You are so right when you said, "We ARE all doing the best we can. That's the bottom line. We are more inclined to give each other grace then we are ourselves, I know this." And that IS the bottom line. I hope you took this evening to relax and rest. The chicken house will be there tomorrow.

White Crane

Dear M1 and all, I'm right there with you. My list of things that need to be done seems endless and all I really want to do is take a nice long nap. My new house is lovely but getting it this way has been a struggley…painters that did a terrible job and had to redo and correct their mistakes three times. They also washed their equipment in the dishwasher and left it with paint all over the bottom. They also clogged up the kitchen sink by washing dry wall mud down the drain. Then there was the black mold and asbestos to deal with and the carpet I picked out had been discontinued. The drapery fabric I picked out had also been discontinued. It has been an adventure and I cry sometimes because of all the responsibilities. Right now I am trying to get all the paperwork and documentation ready in order to get DH on long term Medicaid. I am also completing the necessary spend down to accomplish this. Who knew that spending money would be this stressful! There is also the endless change of addresses plus paying utilities and lawn care on two houses. I am trying desperately to get the old house ready to put on the market but right now there is still too much stuff in it to do this. I have to get everything packed up for the estate sale soon…very soon. There is also a problem with DH prescription drug plan. It is not contracted with the nursing home where he is in MC. Then there is the fact that I am overdo to re-certify for all of the tai chi forms that I teach. This has to be done every two years or I lose my board certification. The oil needs changing in the car and there is laundry piling up like a mountain in the garage. I still have not contacted a realtor about putting the old house on the market. Meanwhile, when I visit DH three times a week I need to be cheerful and very careful not to mention any of this to him. I'm so tired but there is no end in sight so with God's help I continue one day at a time. Someday maybe I will sleep in and just rest. I'm sorry we all need to be here but I am so glad to have you here. It is a comfort knowing you understand.

M1

Brenda: makes me feel bad for complaining!!!! Washing their paint equipment in the dishwasher? Drywall mud in the kitchen sink? OMG I hope they buy you a new one. Idiocy abounds and astounds.

Yes, we all have very good reasons to be tired. It does help so much to have this group here. My energy and ability to bear up seems to cycle, and right now it's at a pretty low ebb. I need to practice LT's gratitude…it's a beautiful spring day. That's about all i can muster right now.

White Crane

M1, thank you for the reminder about LT’s gratitude list. I needed that reminder this morning. It’s a beautiful day outside. The sun is shining. I’m having lunch with friends this afternoon. Last night I met one of my new neighbors and she is very nice.

Jeanne C.

If I had unlimited funds, I would get us each a personal assistant. Some energetic smart person who can handle some of our stuff without supervision or a plan from us.

My husband has been mad at me since yesterday and refusing meds (won that one this morning with a pill crusher and chocolate pudding). I have a million things to do, but have opted for midmorning coffee and a book.

@harshedbuzz "designated frontal lobe"!!! DFL!!! We should get tshirts made!

A. Marie

I'm glad I checked in and looked at this post today. Boy, did it bring back memories of when I was in the trenches along with you all. I'm now in Stage 8 and still feel this way occasionally—but each and every one of you dealing with all this @#$% in the here-and-now deserve the medal we'll never get for caregiving above and beyond the call of duty.

Special thanks to HB for the "designated frontal lobe" phrase (I agree that there should be t-shirts). And I also sympathize with her about the car accident. I wrecked our Prius in November 2020, back when DH was still living at home. I may or may not have run a red light due to extreme sleep deprivation (neither I nor the half-dozen witnesses were sure)—but the other driver was definitely doing 60 in a 30 zone. Frankly, we were both lucky to walk away from that one, and even luckier that no tickets were issued (at least not to me).

sandwichone123

First world problems I know, but dh is calling me between 10 and 40 times a day. I don't want to take his phone away, but really I do. Then he leaves a voicemail and I have to (have to because the alert won't go away until I do) listen to it and it's always the same. I know you love me, but seriously….

I've locked down the phone and he can watch videos and call people on the list. But he only calls me. I can't get my watch to stop notifying. My phone has his ringtone to silent and no vibration, but my dumb watch still vibrates.

MelissaNH

Thank you all for sharing a glimpse of your day-to-day lives here. I feel less alone. It's all too much. I'm still struggling to get my husband's disability so I can keep a roof over our heads and not become even more dependent on the government. I've got more questions for the CELA before sending the agreement letter and deposit. The pest guy (carpenter ants anyone?) was here yesterday and the mold guy comes tomorrow (attic mold that keeps returning despite repetitive remediation). DH has an appointment today. The laundry is piled up, the kitchen is trashed, there is no food in the house and the dog is working on another ear infection and needs to be groomed desperately (standard poodle). Two cars need oil changes and one car has a dead battery. Good grief… it never ends. This house is too much for me to care for on my own, but the rents are so ridiculous right now, I think it might be financial suicide for us to add a move in right now. That stress might do me in and I am in awe of the member that is dealing with a new home and has to sell an old one! Wow! And I so feel you on the incompetence out there. The lack of work ethic and overall stupidity I have come into contact with is beyond maddening. It's like the whole world has gone mad. It's 5am and I'm already exhausted thinking about all that needs to be done. Thank you, again, for this thread and I want the "frontal lobe" t-shirt too!

Denise1847

https://alzconnected.org/discussion/69367/the-niggling-things-that-add-up

Hi M1,

Amen to what you are saying. I have always been able to focus and get through tasks without distractions etc. Now, I am just a scatterbrain most of the time because of so many things to do and the worry that accompanies it. What has helped me is to look back on my life and remember the relaxing times - the vacations, lying on the beach, dancing and having fun with friends and family. You know, like living a real life. Hang in there, M1 - you are a great warrior and gift to our forum.