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Sing it sistah! Caregiver to two 90+ parents, mom is pretty okay and even helpful at times; dad is debilitated with dementia that seems to fluctuate minute-by-minute. I go to work (I live close enough to my job to get home quickly if needed). They don't want an aide (actually he doesn't). I live with them, no spouse, no kids, no sibs, so that my life consists of work, shopping, cooking, cleaning, meds, getting dad up in the morning before I leave, their banking, bills, etc. And with the COVID isolation, they are are really feeling the lack of (other) human contact. There's the occasional call for them from a family member, but that's it. It's maddening. I want to spend my younger old age enjoying a bit, but I guess I'll just have to revel in the glorious days of my misspent youth.
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Davenport Jul 2020
I'm out here and rooting for you, sister! I pray for all of us every day! It comforts me as well.
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My Mom has lived with us on and off for years. After a stroke, she had rehab for 1 1/2 years and she stayed with us. In the beginning she was limited but got much better with her therapy. Then, I noticed out of habit I was still doing everything for her but she wanted to go home. So, we had a talk.
Make a list of things she can do for herself, then sit down with her and explain that you want her to remain as independent as possible for as long as possible. Then tell her, she will need to help herself out as much as possible to do that. So anything she can do, then she will need to do for herself. This keeps her active, alert and helpful to herself and you.
My Mom couldn't cook on the burner or oven without possible risk of leaving stove or oven on. So, I only allow her to cook on our toaster oven that has automatic cut off or microwave. With dinners, I ask her to cut things up for meal prep or wash vegtables or fruit. She sets the table and she clears dishes and puts them in dishwasher. If she's able, she washes the dishes.
She was able to bring me her laundry but couldn't reach deep into my washer to change over the clothes but once they were dried, I would bring all the clothes to her bed and she folded it all and put it away.
Bathtubs and toilets were hard to clean but she kept her sink area cleaned and spot cleaned her toilet each day, making it easier for me.
She will sweep the floor and sometimes vacuum.
We got her a TV for her room with her recliner so she can watch whatever she wants as LOUD as she wants.
During the day, she reads, does puzzles, talks on the phone or helps out with different things.
We give each other space. When I want or need to go out, I let her know where I'll be and when I'll be home. She has my number on her cell phone and can call it there is an emergency. She also wears a Medic Alert necklace for falls. If it's during meals times, I leave a meal prepared for her. Now, that she's home, I meal prep 20 or so individual meals for 2 weeks or more at a time, where it has chicken, pork, meat, and 2 vegetables with it to microwave. I stock her up weekly on cereal, yogurt, cottage cheese, salad items, vegetables, bread, lunch meat, cheeses, soups, etc. to make breakfast and lunch. I also spent time trying new recipes in her microwave or toaster (we disabled her stove). She can now make omelets, eggs, baked potatoes or sweet potatoes, fresh salmon or fish without the stove.
So GO GO GO GO GO out. Go fishing with your husband. Find a church to attend or a small Bible Study Group to socialize with. Or a group that meets weekly for a hobby. Many things you can still do with social distancing. Order takeout food from a restaurant and bring it home.
Once a week or twice, set nights that you let your Mom know will be date nights with your husband. Ask that she eat early and enjoy time in her room while you and your husband have couple time. Then set the table for 2 and enjoy married life together. Watch a movie afterwards, or play a game or whatever. Just make sure it's just you two.
Go get your hair done.
Go get your nails done.
Go get a massage.
Go to Barnes and Noble and browse for a book.
Just get out.
If your Mom needs constant supervision, call around for Agencies that will send a Adult Babysitter for these times. Call different churches and see if they offer anything like that. Join a group where you take turns watching each others adult parents so you can have a break. Do you have family any where in the area, that can help?
With my Mom, thankfully she is kind and considerate and fully realizes the help she is given and tries to make life as easy as possible. I know many people have extremely difficult people to care for. My Grandfather and Grandmother were like that and they both had Alzheimer's. But with loving kind words but blunt words, we usually managed to try to see each other's point of view. Good Luck
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Davenport Jul 2020
Thank you for your thoughtful and caring answer, Lindberg!
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Sounds like you may be going stir crazy. A lot of people feel that way cooped up with covid. Well, at least you have your husband and your mom to keep you company. If you wear a mask and distance yourself from people you should be fine. See how many cases of covid are in your town, and how it is spreading. Just google it. Find out what you are dealing with.
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Imho, yes, I had to move into my late mother's home 7 states away from my own house. During my caregiving journey for my mother, there were many times that I wanted "to run away from home," but I couldn't because it wasn't even my own home! I stayed the course and got the job done, albeit difficult. I felt like a prisoner in my mother's home.
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Davenport Jul 2020
I'm also a 'former caregiver', Llamalover. Just wondering, now that your experience is behind you, how do you feel about it in retrospect?
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I feel that way right now
My mother has a 24/7 IV line in for a constant milrinone drip. I'm really annoyed with her cardiologist because the impression I was under was this would be a 1 or 2 time per week infusion done by a visiting nurse. The day she had the PICC line put in, I found out no, it's a steady therapy and I am responsible to change the IV bag every day. It's been a week and so far I've had to deal with an occluded line (3 times) and her getting the line so tangled around her Walker she's had to hit her life alert button (twice, once st 4:30 AM). So while she's tethered to this machine, I'm tethered to her. And only one facility in my area will take her with an IV, and hospice wont pick her up while she's on this medication.
And the kick of it all, I dont think it's doing a f***ing thing for her! And I know she's just going to go along with whatever he thinks is best. So I'm going to impress upon both of them that I'm reaching the end of my rope, if this is a long term plan we're going to have to have a serious discussion on benefits vs. risks and then placement in a facility
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Davenport Jul 2020
Hang in there!
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I think I understand.

I do not think I would be able to enjoy decent mental health without my work. I am a better daughter because of it.

Oh, how I love them. Oh, how my role grates my nerves (daily).

My suggestion is to find something you can do to carve out time that is not focused on their needs. And also get out of the house to take a walk (masks on, social distance, etc.) with your husband.

D
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Oh, honey, I understand!! For one, I'd suggest to not watch or listen to too much news! Do you have indoor plants, or a space to plant things? Can you take 10-15 minutes at least once a day to just walk in your area? Seeing signs of life helps me. I'm so glad your husband is able to work! You're lucky to have someone to look forward to coming home, and share time and a meal with, to hear about HIS day on the 'outside'. Also, I just go ahead and 'waste' a few hours occasionally to rewatch a beloved comedy (no matter how silly, or even outdated). I often find it hard to settle down to read anything too challenging, but I do try to 'make' myself read at least a chapter, or a few pages, a day, of a historical novel (or anything you'd enjoy); I listen to podcasts of interesting programs (Hidden Brain; This American Life, true crime stories (some are very well done and engrossing). You are NOT alone!! We all support you in spirit!
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OMG, you are not alone. My mom is 89, I truly believe in the last stage of Alzheimer’s. With the Covid, if our loved ones lived in a care facility, they may not have survived. The only time I’ve had anytime off in many many years, is when I was so very ill in hospital. I’m so tired. I still try to make her smile, laugh . I applaud anyone who gives it a try. My family(siblings) Do nothing, I’ve begged them. I hope I’m not too old, when I can get a paying job. It’s frightening. Okay, I’ve complained a lot. Enjoy what you can💕
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I know exactly how you feel. Trapped and feel guilty about it!
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I care for my brother and husband
my husband is better now
doctors offices and rare grocery store ( masked)are my outings
I am sick as a dog for over a week and fear covid. I get tested monday.

my house is a mess and it is all i can do to get food and meds done.
NO ONE Warns you and I dunno what I can do .
I have to assume that if I die or go in to the hospital, my brother will die.
I dunno where to turn because my brother makes just a bit too much money for anything.
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Yes, I absolutely understand how you feel. This is a terrible time for almost all of us and there is no way to pretend that it's okay if we just do "so-and-so....." I am glad that you have a hubby for some support, although in a way that probably spreads you thinner. The highlight of my day is walking the dog, but we live in an apartment so there's not a lot of lovely area in which to walk. I do find meditating to YouTube videos helpful. I still work out of the home so am overwhelmed with both caring for Mom and keeping up with work. I, too, moved across several states to care for Mom. I have sibs but no help. One brother will occasionally stay with Mom if I pay him and send a Lyft to pick him up. :) You've gotta laugh or else you'll cry.... You are in my prayers.
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Arwen31 Jul 2020
Seriously Teri, preserving your smile no matter what, you are amazing.
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Mom likes puzzles but can't see enough to really work them, and dementia makes them harder also, so I do most of the work leaving the easy parts for her. Sense of accomplishment and is about the only time we can do something together without arguing!

Phone calls to old friends really perks me up, although it is had to initiate the call because I feel like I have nothing interesting to say!

Take care of yourself. I have not and am now suffering multiple health issues, not looking good for my end years!
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Yes I am in a similar situation but minus the husband. I am alone with my 92 year old mother. She has Lewy body dementia and I, two months ago, took a job working from home. I have no words. I pray to get through this time quickly 💓Sending Love your way.
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On those days that your hubby is gone, invite a friend or one of your Mom’s, that you know has safe, to lunch. Make it fun! Let your Mom help, if she can.
I know it’s tough. I have been the sole caregiver for my parents for 4 1/2 years now. My Dad passed 9 months ago and my Mom has late stage dementia. Talk about trapped! Call and ask her friends or family to call. My Mom lives talking on the phone. Let me know if any of this helps.
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Toomush Aug 2020
Hard to do right now with this COVID-19.
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Omg! I feel the same way... Im 63, dad passed away suddenly 9 months ago. I stayed with my 90 yr old mom at their senior park mobile home. I didn't realize just how bad off they were physically & mentally until I came to live with my mom. She is a 24/7 job & my life as I knew it felt over. I packed her up one day, took her to my home and never looked back except to sell her home. In between planning dads funeral, caring for mom, I had to try to dump 25 yrs of stuff! Virus made it so much more difficult as Goodwill wasn't even open! I took it all to their porch and put a free sign on it.. I did get 2 great care givers 1 for 7 hrs daytime 1 for 7 hrs night but in btwn & 2 days a week it's all me again. I'm starting to get so resentful but it's not her fault. My little home is also just not equipped for a handicapped person. She's incontinent so I'm up 4-5 times a night with her to change her as she poops/pees but doesn't know to change herself
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We (my wife and I, especially my wife) share your pain. Mom is 99, blind, hard of hearing, increasing dementia. Other than that, hale as a horse. We take turns going to wooded areas around here, especially those that are owned by groups who are part of saving wildlife for perpetuity. It's a long, educational process for us not to take what she says seriously, to not explain things as though she will understand or remember. It helps, sadly, to think of her in some ways like a clever animal, and have no expectations. We spend a lot of time writing letters with her (which is very helpful in getting her friends to write) making sure NPR news radio is available to her, having her roll balls of yarn for our knitting friends, unfold newspapers that we use to extend the gardens (to kill the grass beneath the mulch), folding towels and dishcloths ( sometimes we just mess them up and give them back to do over the next day) and reading to her from the gossip columns of the newspaper. She can't have any of her friends over, and it's a continual chore to get her other kids and grandkids to call or write. Nine months now and extending to....when? We don't have any answers to your anxiousness, but we do share it.
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My brother jokes that I am on home confinement.   He tries to visit as much as he can.  I have an aid, but she basically covers the hours I have to work.  Both my siblings are looking to move near me, but the corona has made that tough.
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