Hey all. New here. I've been my mother’s primary care giver for going on 15 months. She moved in with my wife and I last summer and at first all was OK. In Aril of 2023, it became obvious that I would need to stop working to care for her. She was hospitalized twice in February of 2023 for explosive diarrhea which caused dehydration and again in early October for 14 days total. Her diagnosis consists of:
Severe Aortic Stenosis
COPD/Emphysema
Kidney Failure
Liver failure
Diverticulosis/Diverticulitis
PAD
Vascular Dementia
.... you get the idea.
Moreover, she smokes a pack a day and has no desire to quit. Yes, I get cigarettes for her because it is one of the only things she enjoys. She is 100% prohibited from smoking in the house but the stink follows everywhere she goes.
I honestly believed she would want to move into an assisted living facility after her last hospitalization but was repulsed by the idea of being somewhere besides here. She has the means to stay in a facility but says she’s perfectly happy to stay here.
She is a very kind, pleasant woman who wouldn't hurt a fly, but seems completely indifferent to what it takes to provide her care. I get a lot of "thank you", she tells me what a great son I am etc., as do my siblings, your typical "thoughts and prayers" which in a practical sense are completely useless. I do my best to maintain an "it's all good" facade, but I am 100% burned out to the point I am resentful toward my mother and family. My sister tries, but she lives an hour away and works as a schoolteacher, my brother is two hours away and can't help much. My wife in an absolute angel, but I know she is growing wary.
I did make an appointment with an assisted living facility for a tour and will be bringing my mother with me... at least that's the plan. She remembers next to nothing so I'm not sure how it's going to work out. I remind her a few times a day about the visit and her mind swings back and forth on the prospect of moving out.
How do you handle caregiver burnout other than comfort keepers or the like?
I've tried them but found it pointless as after two hours, I go back to the same things.
Then they wonder why they have no life and cannot handle the situation.
While I'm sure your intentions were good at the beginning of all this, reality has now set in and it's time to make a change as caregiving in the home only works if it works for all involved, and obviously it's no longer working for you.
So continue to make appointments at the assisted living facilities that you like and know that you don't have to take your mother with you. When you find one that you like, you let her know then that she'll be moving there as her care is just too much for you now.
I mean I would NEVER want my son cleaning me up after I had diarreaha. NO son should have to do that.
You've tried it and now you realize it's more than you can handle, so only you(and your siblings)can take the bull by the horn and make the necessary changes to get your mother the 24/7 care she requires in the appropriate facility, and so you can get back to just being her son and advocate, and not her butt wiper and burned out caregiver.
It is a message.
Listen to it.
.. Thank you
Tell mom she has to move out bc her care is too much for you to manage and you MUST get back to work now. Period.
I don't know if Assisted Living will accept her with dementia and all the rest of her health issues. She will need to be evaluated first. Plus, you'll need to find an AL that has an outdoor smoking section for residents.
Don't give mom a choice. 15 months is plenty of time for her to have enjoyed living with you. It's time to live elsewhere now.
It's a minimum fee of $100 for them to sit with your charge and chat or whatever for two hours.
My grandfather was an alcoholic , and smoked 3-4 packs a day , had emphysema . He worked until he was 70. We used to wonder as well how he lived so long ( 85) and was still independent . Had only a few falls when drunk , but only got bruised . My father used to say the alcohol was PRESERVING HIM. 🙄
Grandpa got throat cancer . Doctor told him to quit drinking and smoking . Gramps gave up drinking cold turkey but not smoking . He continued smoking but cut back to 2 packs a day . I’ve wondered how long he would have lived if he never drank or smoked .
Your mom is too much work. She has some pretty serious issues. I wonder if she'd qualify for hospice? My 80yo mom has dementia and I will switch her to hospice care as soon as her condition deteriorates enough for her to possibly qualify.
Her condition may or may not work in AL. My mom is in AL but needs to be a "level 2" cuz she needs more care than the baseline they offer.
Do you have POA? Is her dementia officially diagnosed? If you have POA is it activated so that you can act on your mom's behalf? My mom's was and I was able to sign all the paperwork for mom going into AL so that we basically showed up for an evaluation and then I brought her back in a few weeks to move in. I did not tell her ANYTHING until 2 days before the big move. There is nothing helpful in telling someone with dementia about future plans. Mom does not need to agree to move. You nicely tell her that she IS moving. She won't like it. She may argue, complain, cry, bargain, etc etc. Just stay calm and say that it's the safest option and that you need to go back to work.
You will need your income to continue paying bills and working towards your own retirement. Jobs are hard to come by these days. I should know. I got caught up during the pandemic and was laid off from my job. I ended up back in this caregiving mess and I've been catching heck ever since. I would love to go back into an office. I retired because I allowed society into my way of thinking that I'm ready for it. I'm not. I'm willing to re-train for office work than to continue into this downward spiral of being a caregiver. This isn't for me.
Give yourself a break. Some caregivers have ended up in worse physical and mental shape due to all of the stress than the person being cared for. You get the stress from all ends, and people in authority seem to push more and more on you. The private caregivers will be the first step in releasing your mom. During this time, start preparing for placement as her health worsens, and she will need a higher level of care than your or any in home caregiver can provide.