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.
The long term consequences of leaving a job for an unknowable length of time can come back to bite you in the behind.
One thing you said stuck out to me (as a wife of someone who RETIRED so he could care for his mom) was that your wife is an angel--but she is growing weary--
OK, THAT I get. DH has NO IDEA of how very 'weary' I am of his constant, twisted NEED to be there for his mother. We have had more fights in the past 10 months than in the previous 47 years!! And they all stem from his devotion to this lost cause, which is to keep his mother HAPPY at home. She's HOME, but she is not happy, nor likely to ever be so.
IN the meantime, he is burned out and crabby. I have to weigh every word that comes out of my mouth before I say it--he is so on tenterhooks about her care, and pretty much completely ignores me. This will go on forever (I feel it will).
PLEASE look into places for your mom. She isn't going to be happy, I've met almost NO elders who went into care who were. ALthough I hear they exist.
I am afraid my DH's total devotion to a mother he cannot stand is going to ruin him, emotionally. He is a completely different animal than he was a year ago.
Your wife may be an angel, but you might be surprised at how she really feels.
As far as burnout? All 3 sibs were crispy by July. I am expecting any one of them to have a fell blown heart attack any time now.
You do not light yourself on fire to keep others warm.
It is a message.
Listen to it.
.. Thank you
Enabling and care taking have a very fine line in between them. In this situation, boundaries are needed. I myself have had to draw very hard lines in the sand WHILE holding down a full time job. There's no agenda from where I speak. There's only an experience - MY experience. Any other opinions on advice given and the time it takes to write a well thought out response is MY time like anyone elses @Burntcargiver. Please remember that your anger is yours and not mine.
@Bobrob, you may not be able to stop her from smoking, which isn't the point. The point is that the mere act of getting her cigarettes is allowing you to continue a "facade" (your word), which is wearing you down. Those types of tasks undermine you further and seeds more guilt for yourself.
Smoking isn't the issue. Time, money, logistics, and self gaslighting is the issue in Bobrobs initial posting.
Again, I wish everyone here peace in their journeys with caregiving. My parent is still alive and kicking ... I speak from a place where I too continue to deal with a parent who operates alot like a cross between Archie Bunker/Fredo Corleone/ and Roseanne Barr. I no longer walk any line with my parent. I simple DRAW those lines now - and it's my hope to help Bobrob with that same release.
So lets not make this into a thread about anything else other than HELPING each other instead of pointing our keyboards at one another.
If the something an old person can still enjoy is a cigarette then a tiny effort to make that possible where they're being placed should get done. This thinking is not me as a former smoker or anyone else here being "triggered". That's the new trendy nonsense of the day. If it makes you feel superior to tell people they're being "triggered", good for you.
I do however commend you on drawing the lines on what your boundaries are. I always say that for caregiving to be successful it must be done on the caregiver's terms and not the care recipient's.
I would not have been successful in this line of work for so long and survived the years I did it for my mother if I did not have clear and strong boundaries.
I think we often have to ask ourselves when we feel resentment to situations like this, is to question how much each of us plays a part in our own suffering. When it comes to the care of my parent for example, I stopped years ago in purchasing foods/items/drink that I KNEW would fall short of my own freedom in terms of schlepping said parent to Dr.'s visits un-necessarily. I knew that my health is within my own control, and if said parent wanted to eat and drink badly, I also knew that I did what I could and that was it. I made my parent well aware of what I'd put up with then, and I still do now.
Sometimes we need to remind each other and ourselves that the lines of boundaries strictly can very easily work in our favor if we just muster up the courage to draw harder lines in the sand. Keeping Bobrob's mother addicted to nicotine makes the transition more difficult into assisted living. Thanks for the response.
I'm too old for the the getting "triggered" nonsense to apply to me.
That's belongs to the millennials and Gen Z . God help most of them because they've been conditioned to be so overly-sensitive that even the slightest unpleasantness "triggers" them in some way or other.
I don't know what you do for work or even if you work at all. I know that I worked as a caregiver for 25 years. Many of my care cases were hospice ones. Most of them were elderly people. I know how fast people get sick, take turns for the worst, and suffer.
It's not me being triggered because I believe everyone should enjoy some part of life until they die. If an old person's last pleasure is a cigarette, food, booze, lottery whatever, they should have it if possible and within reason. L'chaim!
I'll tell you the truth and I don't say this very often. I think I feel sorry for your parent if this mentality is how you approached their needs in old age.
I'm going to lay another truth on you too, if I may. If you think your health is within your control you are much mistaken.
People should take care of themselves by doing things in moderation and not neglecting regular doctor visits for themselves. That's common sense, but no one can claim they have control over their health because no one is God.
You would do well to remember that.
Instead of forcing an old lady who's moving into AL to give up her last pleasure, hire someone to take her out for an hour a day to smoke a few cigarettes.
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.
Since you siblings live a distance away, there's reasoning to their limited involvement I suppose. My sibs are in town - HOWEVER, you must get your ducks in a row if your assisted living tour doesn't pan out. I CAN tell you this: There will be NO SMOKING in Al. This I'm sure you know, but if you continue to enable what has to stop in order for anything to alleviate your own suffering - then it's on you my friend. You yourself have admitted that this is a "facade" (more enabling) and it's advisable to take a look at the supply of dependance you're feeding her in her daily diet of "it's all good". Her memory issues are actually on your side at this point and I'd make use of it, using it to my advantage in order for your mother to receive the proper care and support that's needed. As far as your wife is concerned, I'd never burden my spouse with letting a situation wear on our marriage - please consider that more carefully. Get your mother into AL pronto. Your wife, your mother, and your mental well being are FIRST. Good luck
If an old smoker did not die from smoking-related diseases when they were young, they should be allowed to smoke if they're still able to.
There's nothing wrong with getting an old person cigarettes if they still possess enough of their own faculties to have it. If they need a little help to go out for a smoke, help them to.
What does it matter when someone is old? It's not the same thing as letting the kids have bags of candy for dinner.
Let's be honest here. Being old sucks and if people were to actually tell the truth, no one really wants to be around elderly people. That being said, if an old person can still enjoy smoking, eating, booze, or anything else they should have it.
Of course if someone is out of it with dementia, that's when it has to be no more smoking. That's a judgment call for the people who are caregivers to the person.
You are correct in that an AL or any care facility will not allow smoking. Nowhere does anymore.
A family can hire an aide/companion privately to spend a couple hours a day with their elderly LO in the AL or LTC and take them out to smoke during that time.
I myself had a few sweet gigs like that. I had one old lady who lived in AL. All I did for her was hang out and smoke cigarettes with her outside for $22 an hour. She's a life-long smoker but has dementia. She could handle smoking with supervision, but would not be able to manage without someone helping her get out of the building and supervise her a little bit. That was it.
You may have been “kind to her” but you sure haven’t been kind to yourself or the other members of your family. It is not wrong for you to realize that her care needs may well be handled appropriately in residential care. Since SAFETY and MEDICAL MANAGEMENT are really more important to her now than what she says she wants, you must one sided this in balance with decision making.
If you find an excellent placement, choose it. It sounds as though her multiple needs will require a higher level of care than an at-home family team is able to provide, and that situation is NO BENEFIT to any of you.
Good, kind people trying to accomplish an impossible task. Look for balance for all your lives. YOU DESERVE IT.
inthink she fell asleep, daughter was home, couch was on fire, so daughter removed mom and animals… eventually the ixygen tank got involved… yup, i just remembered that.
Aunt went into AL after that….
dicial activities, dinnnerveith people. She liked it there too!
I was a caregiver mostly to elderly with some form of dementia or another for 25 years. I was also a smoker since childhood (I quit 3 years back). I'm going to tell you right now that she won't go willingly to any other living situation even if she can afford it. The reason is because there is no smoking AL or memory care. No aide is going to being her outside to go and smoke every hour or half hour or at all.
Most care facilities these days don't even allow smoking outside on their property.
This is terrifying to a smoker, the thought of not having cigarettes.
You have to place her though because you don't want her living with you and your wife anymore. Don't wait until your wife gets resentful as well as yourself. Move her now.
You can hire a private aide to stay with her in whatever facility she moves into. They can even take her to smoke off property during the day.
Please for your sake and your wife's consider this option.
Memory Care would be a safer choice for her.
And the reason mom was repulsed by the idea of AL is why would she want to go to AL facility when you are doing everything for her?
If mom has the means then if you want to keep her in your home hire caregivers that she pays for. 7 days a week would be ideal but try 2 or 3 days to start. Let me tell you having someone come in 2 days a week for 6 or 7 hours is like a miracle.
You can bump up the number of days from there.
I also strongly suggest that you stop buying cigarettes for mom.
It is not helping any of the conditions you mentioned. And if she is on oxygen that is a recipe for disaster. (if she is not on oxygen now it is probably something you will have to deal with sooner or later)
I also suggest that you contact a Hospice of your choice. If she is eligible (and several of the conditions may make her eligible) you would get a Nurse that would come 1 time a week a CNA that would come at least 2 times a week to help bathe her and order supplies. You would get equipment that you will need to help care for her. And you can request a Volunteer that will come in and sit with her so you can get some things done without having to hire a caregiver.
Supplies and medications would be delivered so you don't have to shop for those items. All this is covered by Medicare, Medicaid and most insurance.
(And if she or her husband were Veterans she may qualify for benefits through the VA and if she is the Veteran you may get paid to care for her. Check her qualifications with your local Veterans Assistance Commission or the VA)
Let the facility dictate how to handle her smoking . I wouldn’t want to be the bad guy who takes her cigs away and has to live with her while she flips out over it .
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 .
The only positive part of her having dementia is that once you get past the initial pushback, she will adjust to the new living situation and forget from day to day that she wanted to be at your house. A dear friend of mine recently went through this with her mom. Now when she visits, her mom will say, “this place is nice. Do you think I could stay here?” My friend says, “I think we can arrange that”. This happens a couple times a week.
While I did stop working, it was actually a good thing for me. I was also burnt out from work and while I am missing some income, I was able to "retire" and am collecting pension money as well as gain access to my 401K. Financially, I'm OK and do not miss work at all.
It is comforting to hear that they will forget living here or at least the memories will fade. Interestingly, I took het to the doctor for a follow up yesterday and while there, she only had a vague memory of being in the hospital a week ago. Since I am not a medical professional by any means, I miss many obvious cues like this as my focus is mostly her safety, happiness and comfort.
Tell her the doctor says she needs to be where there are nurses to help her . She is ‘ indifferent to what it takes to provide her care “ because she’s clueless due to dementia.
I hope you have POA. If so you can sign paperwork to get her in a facility . She may need more than assisted living though . Take her on the tour , the facility can tell you if they can meet her needs or if she needs memory care . Tell Mom about making friends and activities .
You will have to talk to the facility about how/ if they can accommodate her smoking . No one is judging about you buying her cigs. The damage was done by herself already .
You invited your mom into your home. It will be difficult now to tell her it is not working for you. I don't know if she will qualify for ALF with this heavy smoking and with all her needs, but it is worth a try after you tell her that this is honestly not working for you and for your wife.
Step one is sitting down with your wife and having an honest discussion.
Step two is sitting down, BOTH you and your wife, with your Mom and having an honest discussion.
I wish you good luck in placement and a future enjoying some of the most free years of your life.
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.
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.
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.