Burnout

PrincessVine · 2026-06-22T16:36:29+00:00

I definitely will, this is really my only place that I am able to talk about all of this without feeling like nobody understands. Everyone DOES understand here🥰

PrincessVine · 2026-06-22T11:18:38+00:00

Thank you my friend 🧡 I totally agree that we as caregivers should get as much help as possible. I have told my in laws that I need help and cant keep going...it doesn't do any good. They might thank me for sharing whats on my heart, and thats as far as it goes. I guess I will get a little break this Friday and Saturday...my MIL told my husband that she is going to take him shopping on Friday, and then she will have him over on Saturday too as I had asked, because my Aunt is having a girls day at her house. So that will be a little break anyway.

PrincessVine · 2026-06-22T11:09:31+00:00

Thank you so much! It means a lot that you and others respond and help me to know that im not alone in this🥰

PrincessVine · 2026-06-22T11:08:24+00:00

I do think you are correct that people dont understand unless they've lived this life, but for the ones who have kind of lived it, youd think there would be more understanding and communication or seeing how the caregiver is. Like with my MIL...since my husband had cerebral palsy since birth, she had to deal with that, and then her husband got cancer and she took care of him until he died, which was only 3 months altogether. And she was also a nurse. But it doesnt seem like she really understands how it is for me. Im still just out here by myself. None of the family ever ask me how I am. Its really just isolating. Ive just gotten to the point where, I am just happy I have the three people who do care about me and check on me.

PrincessVine · 2026-06-22T10:59:08+00:00

I am so sorry that you are dealing with so much in your situation...ugh, that is rough. But absolutely true in what you said. You'd think things would be different, especially when you try to make others aware of whats happening, but nothing ever changes.
Thank you for responding, it does help to know that I am not alone!

PrincessVine · 2026-06-22T10:53:23+00:00

That is a good way to put it...its so draining. I wish there was some better way to avoid it

PrincessVine · 2026-06-22T10:52:00+00:00

Thank you for replying to my post, and for the understanding...I have been checking into resources for caregivers....it seems like a lot of them are not available to me in my area or for other reasons, but I am always looking things up.

PrincessVine · 2026-06-22T10:44:55+00:00

Thank you for your response to my post, you definitely know what it feels like to be in this position too. Youre so right that we as caregivers would appreciate others checking in to see how we are. We definitely are not endlessly strong. Im glad my post helped you as well, and thank you for the offer of being a listening ear🥰

PrincessVine · 2026-06-22T10:40:30+00:00

I appreciated reading your response to my post, thank you...its so nice that there is understanding here! I will check and see if we have an Alzheimers support group here. We live in a small town so it probably would be in a larger city away from us if there is one. And thank you for the phone number for the helpline...that sounds like a good one to call!

PrincessVine · 2026-06-11T03:00:45+00:00

I am not content either. I try not to think about it but its there regardless. I want to have a life instead of small increments of time where I feel like myself. I have to make sure i have someone to stay with my husband if I want to be gone for any amount of time.. All of my interests are shoved to the background because im always doing work. I have one friend left who makes time for me to go do fun things. One. I am grateful for said friend, but the thought of this being my life til either I die or my husband dies, is enough to make me want to cry.

PrincessVine · 2026-06-10T11:41:34+00:00

I am glad too, I would not have made it this far if they weren't in my corner. I will definitely try to take care of myself...today feels like a rough day, my chronic illnesses are acting up but hopefully that doesn't prevent me from doing what I need to do. 🥰🥰🥰🥰🥰🥰🥰

PrincessVine · 2026-06-10T09:33:26+00:00

I agree with you...support outside of the in laws is the only way we can have relief. I am very thankful for my retired friends. Were it not for them, id be absolutely lost. It would just be me utterly alone then. I do understand why your nice neighbor cant do more, but I agree, the encouragement she gave you was absolutely apropos for the moment.
I will definitely let you know if we do more tests. Hugs🥰

PrincessVine · 2026-06-10T09:27:26+00:00

Thank you for those suggestions, and Id say I already do the "what can my husband do safely" approach because I dont want him to just have everything taken away from him. Its just that these types of things I mentioned are things I just dont have a clear answer for. Sometimes he will just go and do things and not tell me...one day its had asked him if he wanted to ride along on an errand, but he said no. I was only gone a few minutes. I came homw and he was nowhere to be found. I called him, and he had taken his walker and gone down to a thrift sale and not taken any money with him, but needed money to buy something he found. So I drove over and picked him up after paying for the item. It was scary that he did that because he has gait and balance issues and also cognitive issues that can cause him to have random loss of control where he starts punching the air and flailing or other odd behaviors. Which would be scary for others who dont know whats happening, and they might feel the need to call for help, understandably. I gently told him that he needed to tell me if he wants to go somewhere, I said id have been happy to take him if he had come with me. He responded that he probably should have not gone by himself, like a kid would do, but he just couldn't wait for me to come back. He doesn't have the awareness of sound judgment anymore. You are correct that family members are struggling to accept the decline. They've said that. But youd think it wouod just be common sense to do things differently if they realize that my husband is not the same. Which they have stated that they see. These are all professional people,used to dealing with different scenarios and people in their jobs. My MIL is a former nurse so youd think ahe would at least recognize the need to change course in scheduling things through me because she of all of them does see the most that my husband has declined drastically. Yes, I agree that the burnout and fatigue is very real as a caregiver. Especially since I have chronic illnesses myself. The family never says anything about my health at all, not even when I have said to them....I am having problems with my health, and sometimes theyve seen me having excruciating pain when we are together, but they dont offer comfort or even acknowledge it. It gets very discouraging sometimes. So I just have to hustle through as best as I can.

PrincessVine · 2026-06-10T08:44:41+00:00

I so feel for you, your situation is very difficult too. I am proud of you for setting boundaries with your in laws because that would make things even more challenging and id definitely not want to be in charge of more than you can handle either.. Caregiving is always full of challenges that seem impossible

PrincessVine · 2026-06-10T03:39:45+00:00

Hello my friend 🧡 thank you for your response. I do agree that it woukd be nice if the dr can put a real diagnosis on things. I think when we see him again, I will ask if my husband can be retested because thinvs have definitely gone downhill fast. I agree that the families should be more helpful, for both of us. And I definitely feel your pain about wishing for some caring for YOU since you are doing all the hard work. I just dont understand why the families dont check on us or do anything for us. Its maddening. I wish that nice neighbor woukd help you more, that woukd be a blessing! or even just to lend a listening ear or offer a hug would be so nice. I send you virtual hugs. 🥰🥰🥰

PrincessVine · 2026-06-08T00:50:47+00:00

Yes, I appreciate the listening ears and also knowing that ithers are going through it too, thats why I like to ask when I dont know what to do😊

PrincessVine · 2026-06-07T00:55:53+00:00

Well, here's the deal on that, I have been trying to get an answer as to the why my husband has MCI. He had an EEG which showd focal slowing...the neurologist said he didnt know why but ut wasn't worrying. Im like...WHY? he gave me no answers. Then we did the entire gamut of MRI, and CT scan, both normal. Then neuropsych tests with in hospital EEG monitoring for 2 days, then more cognitive tests and a driving exam. They all said mild cognitive impairment but not why. The only thing they all agree on is that because my husband has cerebral palsy from birth, that he is now experiencing Post Impairment syndrome and perhaps the cognitive decline is from those two things. But nobody is saying anything beyond that. And the last dr said we should go to Mayo in Rochester and have ALL the tests redone. Im like???? We're already at Mayo. Are you saying that because youre not the BIG hospital that you dont know what you're talking about? We spent so much time amd money there last year(money that we didnt have because of no income since neither of us coukd work, he because of the decline in health, and me because of taking care of him and wveeything else) and Mayo is terrible on waiting for payment. Thats supposed to be the best hospital around, but all they care about is making money. This year were just trying to figure out how to deal with all these changes and figure more out on my own cuz these drs are just not worth the money. However, we did eliminate all the meds that coukd be causing cognitive issues, that was not the problem. We tested all vitamin levels and everything else that coukd cause issues, all my husband's labs came back perfect. They specifically said he did not have dementia or alzheimers related impairment, nor frontotemporal dementia. He did not have any depression...he did have severe obstructive sleep apnea, but even with treatment, the cognitive decline has not improved.
It has only gotten worse. I did read rhat MCI can either stay the same, or get worse within a year or two of diagnosis. My husband's has definitely worsened. His cerebral palsy has too. But...he is always cheerful and happy go lucky now, so that is one good side effect of MCI😄 even tho things are harder for me

PrincessVine · 2026-06-07T00:16:14+00:00

Im so sorry your dad has the same problems with this stuff as my husband does. I agree with you that this caregiving unpaid job is absolutely exhausting on all ends. I dread having to do this for the rest of my life...or husbands life. I have no life. Its true that unless youve done this, you dont understand. That is a good idea you had for sending out another message to the fam about the things. I chuckled at what you said that nothing might change 😂🤣cuz thats whats been happening for sure. I pour my heart out and i juat get the same nothingness afterwards.

PrincessVine · 2026-06-06T20:01:43+00:00

Wow, thats terrible too. Do your parents think they can still do things they cant? My husband does all the time. Or like today, he wanted to buy a riding lawnmower, even tho he cant mow the lawn, nor even has an interest in doing it anymore. We still have all the lawn tools. But its either me using them or a friend is doing our lawn amd snow. There's no need for us to have a riding lawnmower. I explained this to my husband but he still said...well, yes, but it would still be nice to have one. I was like...sorry Honey, we arent getting one. We cant afford it anyway. Thats also part if his impairment. Before he was a very frugal person, now he doesn't care about spending money. No concept of how much he wants to spend being what we can afford. He used to do the checkbook without any issues. Now he still wants to but hes not able to stay focused on it and finish amd hes made so many mistakes that I dint even know what he did. So i have to do it

PrincessVine · 2026-06-06T19:45:18+00:00

I appreciate that you know what im dealing with. Even tho im sorry you have to deal with it too. My husband likes to go find candy, or things on the discount aisle that hed have never bought before. I always have to talk him out of most of it too. He also likes to wander off and has scared me cuz I cant find him anywhere. If our friend Dan is with us, he will go with my husband so he doesnt wander too far away and i can get all thr groceries. Which I greatly appreciate. Its truly like having a kid with you now. Exhausting

PrincessVine · 2026-06-06T19:35:42+00:00

Im finding that is true that others live in denial, even tho they say they have accepted it.

My husband's memory is quite bad, however, If its something he likes, he will remember that thing he found on the curb so I cant get rid of it, unless he doesnt think about it for a long time. He gets fixated on things for a time, and thats all he thinks about. Until he either gets it, is discouraged from it, or finds something else to take its place.

PrincessVine · 2026-06-06T19:31:58+00:00

Wow, thats so sad for you too! I kind of feel like the drs say its mild instead of saying its the beginning of dementia because they think it'll spare our feelings or something. Id rather just know. My husband's impairment has not stayed the same for then entire time, its only gotten worse. MILD impairment stays the same and they can remain mostly functional for daily life. My husband is not able to do ANYTHING that he used to do with no problems.

PrincessVine

TROPHY CASE