1. < Caregivers

How to build him up when he wants to tear me down.

Posted by crumblingaway @crumblingaway, Dec 19, 2024

I'm no longer sure where to turn but I have to get this out. We're in week 5 of my spouse's 7 week treatment. The chemotherapy, meds, and pain from radiation are very much present. I know he's frustrated, in pain, anxious about returning to some "normalcy" and our finances & insurance, etc. I know this is why he has been lashing out and making jabs about my care-giving but I'm crumbling apart trying to do my best.

I offer to drive but he keeps telling me I'm not needed at his appointments. I like to go to support him as well as just keep up to date on progress and hear what his team has to say or suggest in terms of care.

From my side, I'm going to the store every other day desperate to find and prepare any food he can tolerate to eat/swallow. I've been wrapping up my ends of our business we started. I'm preparing to try and find employment to help the bleeding of money and get insurance for us as COBRA is running out. I've no friends for support myself - just a mother 1000 miles away who has decades of history "checking out" when I need an ear. I feel alone, I feel tired, I feel like I need several of me to get things done - from researching meal ideas, cleaning house, cooking, laundry, and yardwork. I'm stretched thin and only able to do so much.

But lately it's been jab after jab about my ability to care for him. About the job I'm doing. And the gut punch last night that he was thinking of going to his parent's where they will stay on top of things. (It should be stated that he has a very unhappy relationship with his family). Lord knows what he's telling his mother about me. She already has an unfavorable view of me I believe.

I'm walking on eggshells and I know at this time with his attitude that trying to communicate my side of things is a fool's errand and will likely just result in more jabs and anger so I just stay quiet, ask what I can do, try to stay on top of his eating and meds, and plug along.

They say a caregiver is only as good as they are strong and self-care is needed so... here I am. Just trying to get all these feelings out rather than carry them around day to day.

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denise96 | @denise96 | Dec 22, 2024
In reply to @crumblingaway "The downside is that his mother estimates calories and protein and isn't really scientific about it...." + (show)
@crumblingaway

The downside is that his mother estimates calories and protein and isn't really scientific about it. Hasn't really been showing a lot of evidence she's been listening to food requirements. In addition, we live 9 mi away from Mayo Clinic where he's getting treatment daily vs 30 miles away at their house.

As for today... the pain went from about a 3 or 5 (depending on the area) to a 7 or 8 yesterday. He started taking the Oxycodone for the pain. I made him a smoothie and even that burned going past the mucositis and tonsil. He has HPV+ tonsil cancer - rather large, surgery was not possible without an enormous loss of the soft palette. He just turned 50 (I'm 48) so prognosis SHOULD be good but it's hell getting through it. He has no taste right now, pain eating, needs to eat 3000 calories daily and is terrified of a feeding tube in his stomach. Neither of us are spiritual. Can't afford anyone to help either. Both of us aren't working as we were trying to take time off to establish a business (an app - would be a retirement plan of sorts down the road to make passive income), hence the reason I'm having to seek employment ASAP once he's on the road to recovery. We're pretty locked down in terms of budget.

I imagine my husband could relate to your experience, @denise96. He cared for his grandfather by himself here prior to my moving in and there was a lot of things like that - overflowing coffee makers, fiddling with the thermostat too much, having panic attacks when not able to find his labeled lunch in the fridge. It sounded like hell.

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Well, it is a good thing that you are close to the mayo clinic. Where we live, it takes 10 minutes for an ambulance to get here. The nearby ones have all closed to lack of funds. We live in a rural area and the nearest small town is 15 minutes away. I feel like this is just a waiting game. I just bought him a carton of cigs on on Friday which are 10 packs and he has been asking me if I am going to the store today because he is running out of cigarettes. He has 5 packs left and is getting anxious about running out. I told him that I just bought him a carton (he pays for them) and he said "yeah?' I said well you have 5 packs left and he said well that should keep me til tomorrow. YOu can get me more then so I won't run out later in the week. He is literally smoking himself to death. The doctors told him that by contiuing to smoke, the cancer will just keep getting worse. Of course, he lies to them and says he only smokes a pack a day. I just remain quiet because what good is it going to do? You guys are so young. Can he apply for social security disability? Are you guys eligible for visiting nurses?

REPLY
sillyblone | @sillyblone | Dec 23, 2024
In reply to @crumblingaway "I just can't win this game and likely have to just accept that I'll be a..." + (show)
@crumblingaway

I just can't win this game and likely have to just accept that I'll be a punching bag for the next 4-5 weeks (or however long it takes for treatment side-effects to wear off and recovery to begin). Two more chemo appts and 11 more radiation treatments. I understand this is physically taxing on him in addition to mentally challenging. Having to eat large quantities even when not hungry to keep from losing weight, an absolute fear of a feeding tube, soreness and pain in the mouth from radiation, all on top of a cold 2 weeks ago that seems to want to linger around.

I get that all this has made some very large blinders to what I've been up to but I just need to be seen and acknowledged by him for one second! I spent hours in the front yard last weekend at the tail end of a cold tidying up things to keep the new HOA management company away as things had gotten out of hand given my time, I run to the grocery store every other day getting things in hopes he will eat them, I got on my hands and knees and scrubbed the travertine floors and shower after hearing the house is "filthy", laundry every other day, today I have to fix a toilet that decided to freeze up the handle and no longer flush. I'm exhausted.

And friends? No, really. None. Zero. I've reached out online to those I once called friends and it has been radio silence. I know it's hard to know what to say to someone going through something negative and to willingly expose yourself hearing about negative things but dang.

Mayo does offer a support group here for caregivers weekly - it just unfortunately happens to be the one hour of the week I am committed to our business and need to be present for that. My luck...

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I am so sorry. I feel some of the things you are having! It seems nothing is ever done right..I am the reason he is dealing with with everything! He can be so mean! I usually go into another room and count to 10 or cry! He says the most bizarre stuff and really believes it to be true...But he said the table needs dusting. "I said write your name in the dust" .I am not going to be told by him how to clean.I actually do a great job! This is not how I expected to grow old and be told things that are not true. I on the other hand have a best friend who comes over and stays a couple hrs. She checks on me! I value her friendship and the love she shows us both! I do give her a heads up if needed. You can talk with me when you can! Hugs

REPLY
sillyblone | @sillyblone | Dec 26, 2024
In reply to @jehjeh "@denise96 Your story sounds very familiar. My hubby started taking oxy many years ago, when everyone..." + (show)
@jehjeh

@denise96
Your story sounds very familiar. My hubby started taking oxy many years ago, when everyone believed it was not addictive. Pain specialists (numerous) authorized high doses. When we learned how dangerous it was they tapered off. He had spine surgery in 2019 and continued with lower doses. Today, pain from his back, cancer, arthritis.... necessitates its use.

When hospitalized, he wants to come home and recently left skilled nursing/rehab AMA. They had lowered his dosage and he couldn't drink there. I can't reason with him due to dementia so he continues with both.

I hate enabling his addictions but can't live with the verbal abuse I have to endure if I say no.

Being a caregiver stinks! Others seem to think I'm a saint but what they don't know is I'm dying inside.

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I reread what you wrote and one of your last comments hit home! I feel like part of me is going away from the changes and the verbal and sometimes I feel defeated and overwhelmed! We as caregivers have feelings and it is hard to believe what we are witnessing and enduring through all of this. We are hurt and sometimes internally feeling anxious and or frustration to this whole thing! Please know that you describe what alot of us feel! Hugs

REPLY
soldierdee | @soldierdee | Dec 26, 2024

First, the lashing out and threats are the disease, not your husband. I learned from Careblazers that a good response is “I’m sorry” even if you did nothing wrong. It is referred to as swallowing your pride. It diffuses conflict fairly quickly.

My husband is 82 and was diagnosed with AD in 2023. He has good/bad days. He will “plateau” for a while and then he will decline. Around 5 pm, he will start to “sundown.” He has a more difficult time with words. Every day he struggles to tell me something and cannot. I encourage him to slow down. I wait patiently (on the outside) until he can verbalize what he wants to say.

I’ve had to learn patience and not showing my impatience. I love my husband completely and that helps me. My faith in God strengthens me daily. Reading my Bible daily reassures me. Without God, I couldn’t do this.

Fortunately, Steve still remembers me. There has only been 3-4 times that he didn’t recognize someone. We are stable and express our love for each other multiple times a day. I believe he is in stage 5 (of 7) - Careblazer’s I am dreading stage 6 yet I think through how to prepare. With God’s help I’ll get through it. Stage 7 is death. AD makes me sad and I know Steve will die from it. It is very difficult to watch him decline. I often think of wonderful times in the past and remember how he was then. It helps me. Diana

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | 4 days ago
In reply to @soldierdee "First, the lashing out and threats are the disease, not your husband. I learned from Careblazers..." + (show)
@soldierdee

First, the lashing out and threats are the disease, not your husband. I learned from Careblazers that a good response is “I’m sorry” even if you did nothing wrong. It is referred to as swallowing your pride. It diffuses conflict fairly quickly.

My husband is 82 and was diagnosed with AD in 2023. He has good/bad days. He will “plateau” for a while and then he will decline. Around 5 pm, he will start to “sundown.” He has a more difficult time with words. Every day he struggles to tell me something and cannot. I encourage him to slow down. I wait patiently (on the outside) until he can verbalize what he wants to say.

I’ve had to learn patience and not showing my impatience. I love my husband completely and that helps me. My faith in God strengthens me daily. Reading my Bible daily reassures me. Without God, I couldn’t do this.

Fortunately, Steve still remembers me. There has only been 3-4 times that he didn’t recognize someone. We are stable and express our love for each other multiple times a day. I believe he is in stage 5 (of 7) - Careblazer’s I am dreading stage 6 yet I think through how to prepare. With God’s help I’ll get through it. Stage 7 is death. AD makes me sad and I know Steve will die from it. It is very difficult to watch him decline. I often think of wonderful times in the past and remember how he was then. It helps me. Diana

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@soldierdee, you're so right that it is the disease not the person. I admire your patience. I know it's not easy.

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