For those of you who are caregiving and living with the person you are caring for 24/7, how are you coping?

Louise4,

Try flexjobs.com for legitimate work. All of the companies are screened. They have had a lot of success at both ends. It was on the "Today" Show.

It's sounds like you and hubby jumped in and did a remarkable job reversing everything. You should both be commended.

You are doing an absolutely fabulous job! Keep in mind, years' ago someone once said to me, "You can let people rock your boat, but don't let them tip you over in it". I think you get my message.

You are trying to give, I assume (your mother-in-law) dignity and quality of life. You also sound like you have "order" in your life. When you are caregiving you have to keep some people at bay. I am organized just like you, neat, on time, people remarked how orderly and "peaceful" everything is. Peaceful, I repeat. This doesn't happen on it's own. It's by keeping a routine, schedule, and being a good steward over what you do have (materials things, living arrangement, etc.)

Don't let other people's "erratic" behavior come into your castle. It's takes work, it takes declining "some, not all" invitations and you set the schedule for visitations with your mother-in-law. When they visit "the troublemakers" you give them a window, for example, Mom is at her best in the morning from 10AM-12 Noon. Tell them we have appointment to get to, that gets them out the door.

I don't imagine this sibling ever shows up with a box of pastry or flowers and asks you "do you need anything"? You have to take control which you certainly have and limit contact with the sibling who will destroy everything you built.

I am the female version of Felix Unger, so I have my quirky ways, we all do. But I insist on keeping my small place with Mom a place of beauty. And some people seek out to destroy that. Don't be polite about this.

The one's that make the most noise usually do the least and usually get the most attention and resources in the family. Unfortunately, oftentimes their situation never improves. We all have a relative or (2) who needs a little help now and then along the way and you pitch in and they get on their feet--a death, divorce, sickness, job loss--life happens. But for other's it can be lifelong with no end or improvement of any kind in sight. I call it the kitten who lost their mittens. They always have a problem. Probably more than what you can provide. More like they need professional help-social worker, retraining, skills, perhaps housing and food voucher. They need to be assessed but you can't do everything.

Stay centered. God Be With You...you are such a great person, every mother-in-law should be so lucky. I sincerely mean that.

:) dear louise, your kindness is amazing. please treat yourself very well.

Hello, I am new to caregiving on 24/7 basis.

My mother-in-law is 77.
For 8 years since my father-in-law passed, my husband's sibling and adult children, have taken advantage of her; stripped her financially, destroyed her property, stole whatever they could to support their addictions. They left their dogs for her to care for (11?) and the list goes on. Anyway, the house was full of rodents, roaches, a large rat snake (not a pet), holes in the walls, and floors falling through.

Mom did not want to leave, her husband died here, so, my husband left his job, moved to his mom's, removed all the human rats, and spent 2 years cleaning the property and getting ready for a new home be put on it for her.

My husband found homes for multiple dogs, so now we are down to 4 outside and 2 inside) and the new home was put on the property. Now we are getting ready to remove the remaining debris.

However, Mom's personal care got to be too much for hubby alone, so I retired from my position, - he picked up a local job, and now I care for mom 24/7.

When I was working, I bought mom all new clothes, bedding, towels, drapes, furniture, appliances, etc...so everything was ready for the new house.

To present....So far it has been pretty easy...I clean and do laundry in the AM. She gets up around noon, then the rest of the day belongs to her. Typically, every other day begins with giving her a shower, doing her hair, cleaning her bed and bath rooms, cooking breakfast, massaging her knees and feet, and cleaning up incontinence issues as they occur, throughout the day - which occassionally means multiple showers.

Her bedroom is cleaned regularly, and her 2 little inside dogs (one is mostly house trained, the other one poops and pees wherever she feels like it, probably because she is a senior dog) - are cared for; fed and bathed.

Mom has since progressed wonderfully in many ways - health wise. Her skin and face looks fresh, the arthritic swelling in her knees (which made wearing pants difficult for her) has significantly gone down and she is now able to move around her new home much easier.

Problem 1: One sibling.
Everything is drama and most of the time this sibling needs money. - which mom always tries to give. Last year the child demanded a lot of money for a downpayment on a car...literally bullied her until it was received -- and it is like this most every month. Its always something leaving Mom upset and wanting to give whatever money is "needed" to this child.

When we explain there is no money to give, the bullying gets worse, mom gets stressed and anxious, her memory lapses, she gets confused, angry, and frustrated. She talks about selling everything, going to a nursing home, or just dying. It literally takes a couple of days to calm her down.

This sibling hasn't been over for 2 weeks now..mom is starting to flourish, though she still calls this sibling everyday.

Problem 2. I will have start working again soon. I am applying for work-from-home positions. Though finding something legit is proving difficult.

So coping: I think I am doing okay.
I do feel a little isolated at times not too bad..Financially, we are stressed. I don't sleep well but thats my age I think.

This is a topic very difficult to understand for someone who ISNT living with the Elderly Woman who has Dementia. Well that woman just so happens to be my Husband's biological mom. He moved in with her, into the house he grew up in, back in 2011. She just couldn't keep up with all the responsibilities of the property, and at the time he was single so he was happy to help. Back then he could work a full time job and not worry about his mom being alone all day. Now fast forward 11 years and I am the one providing the care for his mom who cannot be left alone period! I married him, he has 4 other siblings who do nothing but criticize and gossip about me when they are together, yet they don't help with 87 yearold mom. The x son in law helps more than her own kids except my husband. I'm here with her all day while my husband is at work. And when his siblings practically scared and threatened me into the position, claiming I never "went upstairs to help" considering that my husband's sister lived upstairs with her, and I did go up there but the sister was not mentally stable what so ever and I couldn't be around her, she would accuse me of stealing from her and she would get physically violent at times. Plus I did all the house work and made sure all the garbage on the property was up on the road every week and cleaned up the property plus I took care of my 14 yearold son and husband on top of cleaning after his sister and aging mom. So the truth is she financially took advantage of the situation, did nothing to benefit anyone in the house, made more messes, and verbally abused her mom, for what? To get a free ticket out of our house and get taken care of by sis, telling the sis that my husband and I do nothing for his mom, that I never go upstairs when she was the reason why I couldn't sometimes to up there. This sucks I cannot stand people anymore.

I am you. I am miserable and hope to start counseling soon for some coping tools. I will not permit my son to sacrifice himself for me this way. It’s so unfair and I pray every day that my dad will decide on his own to go to assisted living.

Admins???? Any chance this excellent question can be moved into "Discussions". It has a ton of answers and is much loved.
Reporting so you will take a glance at it and make decision for us.

it's so hard to find the right balance.
so many kind, loving people out there...
and -- we must be kind, loving to ourselves too.

wishing us all a great weekend!!!
:)

How to cope as a caregiver and I am a new one. I have hired CMA's two days a week. And I even feel guilty about that. I also started counseling.

Just had a thought about his waking up at 3am. I've heard there are stuffed animals that you can record messages for children, perhaps that could help with the anxiety. And, I think there are stuffed animals that have heart beats that are comforting not only for children but even young animals.
Why, I did the Walmart Walk today. It was lovely. Enjoyed every moment : )

Husband at his primary care doctor's visit yesterday, he certainly put on a very good show for most of the exam. Yet, managed to contradict himself several times. Stuff like he wants to get out and about a lot more (yet always has a reason why he can't when I ask him) then a few minutes later said he has balance issues. Yep. But, he refuses to partake in in home physical therapy. Which I've told him would be very helpful. Even in front of the nice woman who came out to evaluate him. Nope. He wouldn't do it. Anyway, back to the exam room, husband just started to rattle off stuff, some sort of joke (I think-can't really remember it all, so surprised-my brain just kind've froze), he laughed to himself, he was kind've in his own world, independent of myself or the doctor, looking at the floor while he was talking. It only lasted a minute of two. I did not say a word, this time just letting him be himself and I hope the doctor could see the changes. Later that day, hubby and I had a real disagreement about his cognitive ability, I did not tell him about some stuff I've changed over the past month or so as a direct result of his dementia. Which would have escalated easily to the unmanageable level argument with him. So, the migraine (surprise) that was idly hanging out in the back of my head, decided to make itsself known, took some extra meds to manage it. So, how am I doing? Stressed, and walking the knife edge between sanity and dementia.

My 91 year old father moved in with my husband and I a little over two months ago. He fell at home (he lives 10 minutes away - we've always been a close family) and fractured his pelvis, spent a few weeks in rehab. Our house is a two family and my sister lives upstairs (it's not a big two family - 2 beds downstairs and one up, a bathroom on each floor). The facility specifically told us that my father could no longer live by himself. My sister works full-time and is single, so she cannot care for him during the day. I've been working part-time off and on for years, family has always been a priority so caregiving fell on my shoulders. Just seemed to make sense to move Dad into our house so he wouldn't be alone and I could still take care of the pets and everything else. We rented a van and moved our college aged daughter into my old bedroom at his house (she's away at school) and my father took her room at our house. My sister moved some of her things into his house in her old room and kept some of her things in her apartment upstairs (my father was very worried that someone would break into his house and didn't want it sitting empty - we figured one less thing for him to worry about). Basically, everyone's life was uprooted. The first couple of weeks my father was literally awake all the time. The rehab facility changed his medication and added some new drugs that really did not agree with him. His doctor prescribed additional medication to help him sleep - it woke him up and made him more confused. It took a while to get his medications straightened out, but we did. Showering was an issue - thankfully, my husband volunteered for the job. Incontinence is an issue. He still gets the urge to use the bathroom but can't make it. So, he wears adult diapers. Only problem is that he still thinks he has to run to the bathroom. So he was doing this at night and not putting the diaper back on properly or just not putting it back on at all. So, there were many, many night time accidents. And, like a child, he woke us up nightly screaming he was wet (him, the bed, everything needed to be changed all hours of the night). So, I was constantly washing something - my dryer called it quits after two weeks (I completely understood - it was a lot of work).

He has physical and occupational therapy a few times a week at home along with a visiting nurse. The therapy helps a lot, but feels like my home has a revolving door - always someone stopping by for something. My dogs are always barking at someone. The therapy has helped him immensely. My father is walking much better with a cane and has learned how to properly use the bathroom and potty chair in his room. The occupational therapist worked with him and he no longer wets the bed at night the way he was when he first moved in. Biggest problem right now is his constant craving for attention and severe memory loss. If he wakes up at 3 in the morning he thinks we're all ignoring him (we're sleeping). I keep reminding myself that it's all new for all of us, him included. It's not easy and I don't know what the future holds.Some days are good and some days are tough. Some days walking around the Walmart can feel like a vacation.

Start with Power of Attorney. Who has it? Next, contact your local agency on aging about your concerns. Next, ask your brother in law to help out, since he expects you to be working then someone has to pick up the slack. Otherwise, time to find either assisted living or focus on the Medicaid solution. It seems like this is getting to be too much for you on many levels.

you just described my life to a Tee 20 yrs ago when my father lived with me.We now have my mother in law living with me and although I do not regret one moment I do get resentful that the other 2 sons and 1 daughter do nothing and just wait for the inheritence.MY husband and I take it one day at a time and try to only focus on what we can do and NOT what others WON'T do.

Run, not walk and look into Assisted Living for your mom. Please, I took care of my dad for 14 yrs in my home after his bad stroke. I kept thinking the end would mean a nursing home and I just couldn’t do that.

Assisted living is so different. My dad will be 96 next week. He has been in this new facility for 16 months. He is much happier there. It’s is close and I can visit often but I now have a life. They have way more things going on in their than I do at my house! He loves it.
Run,,, your brother needs to help you. Get your life back.
susan from Indiana

We are really struggling. We lost our mother-in-law less than a year ago, and my father-in-law health went downhill almost immediately. Within two months, he was falling approximately four times a month. We left our jobs out of state, sold as much as we possibly could, put things in storage, and moved in to my husband‘s family home. We have been checking into Medicaid based stay at home care, that would help us with income, however my brother-in-law thinks we should find jobs outside the home. It truly is 24 hour care, plus housekeeping, meals, all the errands, and soon, it will be taken care of bills etc. when we approach the subject, it looks like we are just trying to benefit, without holding down a job. Have no idea what to do

Thank you, bundleofjoy, for the kind words and encouragement!! :) Those are good reminders, and I needed them.

dear caughtbetwixt,
:)

you are extremely, extremely kind.
and you have an amazing attitude (winsome...to face things with a smile instead of a scowl).

please reward yourself (every day?) for all your kindness.
some treat; nice things.

also --- please somehow live a full life too.

there are people who go in the opposite direction (extremely selfish).
...and then there are people like us (often daughters) who (sometimes) go too much in the other direction (too selfless).

too selfless in the sense that:
a nice person MUST be nice to themselves too :).
you're a person too :).

find some way, so that your life isn't sacrificed.
--tenacious? ok! so don't give up on your life. you have dreams? go for them!
--courageous? great! for your life too :).
--winsome? excellent. smile doing lots of things that are good for your life.

i looove my parents too.
i help too.
we must make sure our own life is not damaged.

we can't be nice to others and MEAN to ourselves (depriving ourselves of a life we deserve).

we weren't given life to have our life stolen, by our own parents.

all i mean, is, be careful.

i think you're an incredibly nice person.
now make sure you're incredibly nice to yourself :).

bundle of joy :)

Cont - just remembered something that I saw over the weekend that helped: tenacious winsome courage. Tenacious means we don't give up. Winsome means we face things with a smile instead of a scowl. Courage means we do what needs to be done.

Not sure if this thread is still monitored, but in answer to the question, one day at a time. My parents moved in with me back in 2019; my dad had Parkinson's, & mom was worn out from caregiving for him. He was a piece of work; used to being independent and being the boss, but with the PD, the filter that used to keep him at least nominally interested in other people disappeared. He passed away after a hospitalization in 2020 - probably a PE, but a blessing/release in any case.

So now it's just mom living with me. I bought a house for them to move in with me because my condo would not have worked (stairs). Overextended myself on it, but it's done. All of their stuff is in the main part of the house; I have my own room/bathroom, but just about everything else is hers. My stuff is in the basement, as is the rest of hers because when we moved, God forbid we got rid of too much. Dishes, pots/pans, etc., that never get used but have to be unpacked & put on shelves... (－‸ლ).

I ended up spreading my own furniture out to occupy the space I needed to avoid having her ideas take over the basement too. My dad didn't leave her with much financially, and what she had left after their house sold is almost gone because she just buys things we don't need. Retail therapy.

She's had a cough for 4 months now - her dr is treating the symptoms, which is about all he can do, since the likely reason for it is she eats too much of the wrong things (wheat, dairy, etc.). I think she has an eating disorder - she used to be quite heavy but had gastric bypass, followed by several other complications. She has plenty of energy to shop or cook all over the kitchen, but gets exhausted if she has to do anything she doesn't want to do.

I get that some of this is probably backlash from being my dad's caregiver herself for so many years; he wasn't a kind man before PD, & she's a retired nurse, so there was a lot she did that probably most wouldn't have done. But sure as she feels the least bit neglected, she gets "sick," which then becomes an actual sickness requiring attention & reassurance.

I have no friends that aren't also now her friends because she's competitive about it - had to go meet my co-workers, so now I don't even have that. We go to church when she's up to it - which she hasn't been for weeks because she's self-conscious about the coughing. Yes, she has asthma, but again, cutting out the wheat and dairy help that too - can't cut that out, though, because that's what she eats: sandwiches with meat and cheese...

I've been working from home for the last almost 2 weeks because we caught whatever bug is floating around; she got dehydrated and dizzy/unsteady. She's better today (drinking more water), & I'm looking forward to going back to the office, but then what? She sits at home & waits for me to come home instead of making new friends or contacting the ones she has. I'm not her husband - I'm her daughter....

She won't take care of herself because she knows that I will - sister moved out of the country to not have to deal with this. 2 brothers live in different states - bless them, they both have had her stay with them for a week here & there, but now mom is not comfortable flying by herself & wants me to go with her. Doesn't get that part of these trips is giving me a break, & God forbid anyone should actually say that - she'd go into a funk & throw it up in my face for the rest of her life. NH is not an option at all. Couldn't do it.

She has no hobbies & doesn't want any friends that aren't associated with the church. More & more dependent & enmeshed as the days go by, & I'm the bad, rotten, terrible person who can't say anything because other people do not get it. I love my mom - I really do! - and I was so glad that they moved here instead of being 750 miles away, but she's overly dependent & needy, & it's getting harder to handle. So, one day at a time. I can do this for today. No plans, just whatever today has.

Me too, only 2 months in. I feel so trapped, helpless, isolated. This is a nightmare.

I feel the same. Lost. No life if my own anymore.

I understand. I really don’t want to leave my dog with anyone. I used to leave my dog with my mom, the two short trips I had, (one was a wedding, one was a funeral) but now it’s my mom I’m caring for.

Living your dream I have been my father in laws care giver for nearly 8 years now. Up until 8 weeks ago we have been able to allow him to live on his own with many trips to his house daily breakfast lunch dinner and drop ins I give him his meds cook his meals so his personal care including foley care and cleaning after incontinence showers and all household chores so he can stay in his own home we put up cameras in all his rooms so that we can watch him when we are not with him. Pops hasn’t been an angry patient until recently he has had his moments behavioral changes are now taking place. I am hopeful that when his bedsores these developed in hospital and are on his heels,, heals I will be able to go home right now through he is in boots which make him unstable and so unsafe to stay alone again. His behavior of course effects everyone around him and for me when he acts out is it hurtful and feels like an assault to me personally know it’s the disease but it’s hard to take sometimes so to clap I stay in another room and remove myself as I can from the situation. The big problem is he forgets his poor behavior but I don’t have Alzheimer’s and don’t so much as you would with a toddler is how you have to deal with them. Keeping humor with you helps. Best of luck and keep up the good fight. Because for you it really will be a fight sorry. Melody

dear kitchenwitch, gelleng and romehelper,
:)

happy new year 2022!!! :) :) :)
wishing for all your new year wishes to come true!! :) :)

...let me guess? you are all women?
i'm a woman too.
hug!!

please, also hear the "divine calling" (you mentioned this expression, kitchenwitch) ---- of helping yourselves.

please don't sacrifice your lives.

yes, let's help our elderly parents, but please also help yourselves.

no loving parent wants you to sacrifice your life.

you were not born to have your life sacrificed, by your own parent (or anyone else).

of course, so many decisions depend on money...
...do our LOs have money to hire in-home caregivers, etc., other options?
...and it's not easy to find kind, caring, non-thieves, caregivers.

still -- please live a full life.
:)

a loving parent wants that for you.

for those of us who don't have loving parents, the universe wants that for you.

and especially if you are a woman ---- the universe wants that for you. be aware, that women's lives have been sacrificed for generations and generations. help stop that :).

new year hug!! :) :) :) :)

bundle of joy :)

This is me! I have only had my mom since Oct 3, 2021 and my feelings are exactly as you described.

Last night I went in her room to put away her laundry after she had been put to bed and I hear "I love you and appreciate you.", and at that moment it is worth it all. The Teepa Snow videos have been a great help in giving me ideas to help things go as smoothly as possible.

What do mean by set boundaries?

I to praise the Lord for His watchtower over me every day. My husband has Parkinsonism and Dementia. He would be totally bedridden except for a hoyer lift that I use to get him up every day. Every morning I pray for God's grace, His strength, PATIENCE, and perseverance needed for each day to care for my husband of 60 years! It's not easy, but God is good if I don't get in His way. I claim Prov: 3:5-6 to get me through each day with His help! Thank you for your encouraging post! May the Lord continue to be with you on your care Giving journey!

Yes, yes yes, I totally get it. I understand. Both physically and mentally the price that's being paid...
Sometimes a situation doesn't come with easy options, such as making the choice to extricate oneself from a binding situation. Further, if you can't find respite care or help, it's very challenging. ((hugs)).

Since the pandemic, where we've all had to totally adjust the way we live our lives, I've found I have more regrets about not doing the things I really wanted to do, which was travel. Before I became my aunts primary care giver, I did some...but limited it because I had a dog I felt bad about leaving AND couldn't find a petsitter. My husband travelled a lot for work and I missed many international trips.
But finding people to dog sit (at the time - he's passed away now) was a challenge where I live so I finally had to decide to kennel him at Petsmart for one trip and regretted it when I came back seeing he had not had proper potty breaks during the 10 days we were gone. Hence, my reluctance to travel and leave him. On a different note, the same has been true for finding respite workers and caregivers when it comes to my Aunt. I live in a semi rural area in the PNW and I've made multiple attempts to find somebody to come just a for weekend, and there is nobody available. This includes going outside of my area and being willing to pay extra. They either don't call back, or say they don't come out to where I live or that there is a shortage of caregivers and companions.
Further, my Aunt doesn't like it when we leave the house even for a couple of hours, which only happens about once every 2 months if that.
I could say more, but you get the gist...we virtually have no private time, and no time or way to get away. There are no family members to help or friends we can depend on either.

My husband and I care for my
85 year old father who has mobility issues and multiple health conditions.
I feel like my life is on hold (because it is) just as you do.
We have 2 sons and 2 grandchildren that we now can’t go see very often and when we do we have to go just for the day (no more overnights) so we are back for my Dad. Can’t trust him alone overnight. We haven’t had a vacation for 2 1/2 years.
I tell myself it isn’t forever but sometimes it feels like it.
You are not alone and you aren’t selfish. It is just so consuming.
Take care!