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I care for my 81 yr old mother (she doesn’t drive, needs help showering, I cook all her meals, manage her meds) who has been in our (w/my amazing husband) home for the last 2 1/2 yrs. We (hubby and I) moved 1100 miles from home (what few friends/family I had are there) to help w/hubby’s medical issues (moving here, FL, he now is now able to work). I have no friends here and now with COVID (what few visiting nurses we HAD) no one has been in my house for months. I get out only to go to the grocery store (mom comes along but if stores are swamped she stays in the car - which is most of the time) and when she has a doctors appt. I don’t want to expose myself to anyone outside my home because I doesn’t want to get sick or pass it onto my mother.


Most days I’m alright but there are times when I just feel so alone (especially when my husband goes out fishing once every six weeks or so). I feel like some days I’m absolutely going stark raving mad. Anyone have any ideas or thoughts on what I could do before I lose it?

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Momscgiver, I hear you and I totally get it. You are not alone, there are so many of us all in the same boat. Sending you big big hugs through all this chaos! Not sure where you are, but I'm in NY and yes, it's been a long, tough road. But we will get through this, and this stupid pandemic WILL end eventually.

This has truly been a difficult time- I lost my grandfather to COVID19, my grandma and I were sick with it, which caused us both some health issues. But you know what? Those health issues are clearing up. My breathing has gotten much better to the point where I hardly need the inhaler. Grandma is recovering well. My family and I fought because difficult times tend to bring out the worst in people, but we are all still here and trying to patch things up.

My dear, don't worry. Like all storms in life, this too shall pass. Stay strong, take time out for yourself, go do something fun that you enjoy at least once a day. I live for my 12 o'clock Beatles block on the radio everyday! :) I promise you, it's all going to be okay.

To all of my fellow caregivers out there, sending you guys lots of love and support.
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I too am in a similar situation. I care for my bedridden husband who has been under Hospice care for the last 19 months. I haven't been able to work for the last 3 1/2 years due to some health issues and now my husband. I am so used to being at home that this Covid crap really hasn't changed my life at all(other than I now I have to wear a mask when I go in places). That being said though, I really have tried to get out at least a couple days a week for my sanity's sake to meet a friend for supper or just shop for a little bit to get some more human interaction, as caregiving 24/7 is very lonely, and in my case, my husband since his stroke, doesn't speak very well, so we really can't have much of a conversation. I'm not as paranoid as some people are about getting the virus or exposing my husband, as I feel at this point my mental health is more important. I don't know if you have anyone that can come sit with your mom at least once a week, so you can just get out for a few hours, and do whatever you enjoy doing or not, but you'd be amazed what just a few hours away can do for your perspective, and mental health. I think that that is the biggest mistake that us caregivers make, and that's not taking time for ourselves. It's so very important. If we don't as you already know, it takes a great toll on our mental and also our physical health. You're just going to have to make yourself a priority. It'll be worth it. I promise.
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I am in a similar situation to you - and I totally identify with feeling like a prisoner in your own home. The covid situation has made things worse for people like us, as we want to protect our family and minimise going out, but in normal times the going out might be the only respite from care giving. I used to swim several times a week for mental as well as physical health but have been unable to do this since March, and miss my swimming buddies as well as the exercise. Also, you are spending all of your time caring for another and very little or no time on caring for yourself, which is not good for you and that is why you are feeling so low. The most important thing in the current situation as well as in the future is to balance your caring responsibilities with some time for yourself to do something you enjoy or that makes you feel good. Ideally have a place in your home that is your own personal space, where you can go to when everything gets too much or when you just need a break from caring. You also need to find something that gives you pleasure, to offset the daily grind of caring. My personal space is my garden, with gardening as one of my main pleasure-giving activities. I also have a room in the house that is mine and that I can go to for a rest, to read, watch TV, catch up on emails etc without being bothered by anyone else. Sometimes I find going for a walk helps too - alone, not with anyone else tagging along. If your mother tries to insist on accompanying you every time you leave the house, you need to try and kindly explain that you need some time to yourself sometimes. My mother used to pounce on me every time she saw me looking like I was about to go out, questioning me about where I was going and that she was coming too. It would drive me crazy and this is where the feeling of being a prisoner came from. In the end I would say I was just going out and wanted to be on my own for a while. She didn't like this but it it was essential to retain my sanity. You are entitled to some personal space and to have a break from care giving. Hope this helps.
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earlybird Jul 2020
Good for you, Chriscat. We all need time to ourselves.
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Yes...I am here for my Mom 24/7 and it’s just me, my husband and her everyday. She is 91 and has moderate dementia and is very wobbly and uses a cane - refuses to use a walker. Half the time she forgets the cane and has fallen twice and stumbled many times. I can’t follow her around constantly. She is beyond anything that requires critical thinking, i.e. preparing meals, taking meds, using a telephone etc. Naturally, we each try to take times for ourselves, but she’s with it enough to resent us leaving for a few hours....separately because of COVID. I don’t want anyone in the house that could bring in the pandemic. So, I go kayaking and hubby fishes. We’ll take turns care-giving. I did it for his Mom and older sister, so he’s willing. It’s relaxing but we come home to the full time job. I keep telling myself this too will pass; try to keep a sense of humor; if I get testy; I forgive myself and try better next time...despite the myriads of times I cook something special she likes and I don’t get even an “oh this tastes good”, least of all a thank you. Care-giving is the hardest job in the world. If you are in that position....I admire and applaud you. Enough said.
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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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I am in a similar situation, not going anywhere and not working outside home, taking care of my 90 year old mom. Doing a hobby helps, I do some crafting and writing. Get outside and work in the yard, if you can. I,m also involved in an online Bible study, it isn't the same as seeing people in person, but it helps.
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I am so glad I am not alone. This is a tough situation. When I made the decision to care for Mom, 90, I did not have a crystal ball. Mom is somewhat dependent on me. I have someone come give me a break once in a while. I go out in the yard to garden and that is my happy place. I used to have a home that was my safe place which I gave away. Now I have a room that I can use, however this J O B is 24/7. The only one that understands this is my husband. People volunteer to come and never show.......brother thinks that I am over~reacting, says he'll trade with me in a heartbeat. Well he retires Friday, we'll see if the rubber is going to meet the road. I take Mom for a ride EVERY day for one hour. Some days I count the minutes, some days I really enjoy. It all has to do with my Spiritual fitness. I also do Zoom meeting and phone calls with friends. It is so nice to see their face. I am here for you to vent 24/7.
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Boy can I relate to your situation though my mom passed a couple of years ago. She was bedridden on hospice living in my home for 2 yrs. Then my MIL had to be cared for because my husband's only sibling died and this went on for 3 more years. Total I spent over 17 yrs care giving. Friends with frivolous one track minded interests disappeared. Now the pandemic is keeping me from finally realizing any dreams and plans we had to move from this state. It is easy to feel trapped and depressed. What helps me most is keeping a journal. Gardening a bit helps as well. Do you have a pet? I came on Aging Care and often that was the only outside contact I had, and at the time my mom was bedridden in my home that helped immensely. Please feel free to come on here and vent or keep contact too. There are many caregivers who feel as you do! You are a wonderful caregiver to your mom.
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Hi - I'm Barbara. Only child Caregiver for Dad, BUT he only lived me with few months.
Own his own with 2 helpers and me visiting 2 days a week. This forum is a huge help to all of us. I mostly read but thought I would share today.
Dad is 93 with dementia, not worst case but we have to give morning meds and prep meals. He is able to walk and use bathroom.
Sometimes we have to think out of the box of what to do for our parent.
I pick flowers for Dad and he loves them
Brought friends dog over and he enjoyed that and lit him up
Bring a magazine and go through page by page with comments
Bring over a food treat that he likes
Buy scratch off lottery tickets and have them do the scratching with a coin. Last one was a $10 winner- Dad was happy!
Show him paper pictures from the past or pics/video on my phone of something
We do simple exercises together - marching in place holding on to chair and he can lift free weights. I get Dad outside for short walks. He also enjoys just standing outside and watching the birds and planes.

You can use a wheelchair outside and take parent for a walk. If parent can get to the chair outside. It can be kept outside hidden and covered if you don't have a ramp.
If parent can get to the car take for a ride - plan visit to a park - have lunch at a picnic table.
Doing something together such as adult coloring books, puzzles.
What I find is we get so used to doing things for them we forget they may be able to do things also but we don't give them the chance. I witnessed in a rehab they gave a lady towels to fold and she felt an accomplishment.

Nothing says we all should not be exercising even if our parent can't . Many exercises you can do inside and maybe you can leave for 15 min for a walk.

Dad likes to watch the birds - if you have a tree or anywhere you can place bread and attract birds it can hold their attention.

It's easy to get frustrated but put the energy into thinking of something your parent would like. They know more that you think and pick up on our frustration.
Put yourself in their place.
Sometimes we forget to ask what do they want? - what would they like to do?

I took my Dad to the driving range - long time golfer and he can still hit a short shot but he enjoyed just watching the guys hit and then we played a couple holes of miniature golf.
Since the virus I'm thinking many of our homes have less items, is more organized, and if it's not than you can do that on your own to keep busy and you feel better downsizing.
I think we get so frustrated as we are thinking of ourselves and how we are handling the care giving situation. A parent can realize they are stuck and can feel like they are a burden.

Try a different approach. The last thing we want is after our parent has passed is to look back and realize we didn't do more positive activities.

All the best to care givers and do for yourselves best you can and try to make your parent smile today.

Barbara
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belindaparis Jul 2020
Barbara I love your positive energy, once in a while I get down but I, like you, am mostly high energy and positive. I choose love and I choose to be happy. But I understand that some people may be having circumstances that makes it very difficult to choose love and positivity and in that case I hope they make plan and find a way to change their situation, got the sake of all involved. Where there is a will, there is a way!
i would like to add that I am 65 and take care of my 84 yr old sweet H, marred for 27 yrs, he is in stage 6. I have given myself many attitude adjustments along the way and have learned the lesson of acceptance.
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HI I hear you! I have been living with my mom with dementia since May. It seems like years now. Some days I wonder if I can even handle it. I changed my life to be here ..even thinking that i could get a part time job close by ..to alleviate stress. When I am gone..she wont eat. (or thinks she ate and did not) now my job is gone. My mom is 81yrs old..she has ALWAYS been a person that needs attention. which at times makes me wonder if she is doing her coughing fits, "cold" scenarios, and repeat activities like changing the channel on the TV constantly ..ON PURPOSE (?). Its only when I walk in the room. She complains about the same things all the time. when it hits her brain it has to process out of her brain until the next time. Its like a never ending tape recorder. I am coming to a place/process of NOT having an opinion concerning her antics...not easy. Which is why i am here on AgingCare. I have always been a person with empathy. Why have I lost it now? Its like I dont feel sorry for my mom at all. I have done workshops on Alzheimers, taken classes, attended every doctors appointments etc. even spoke to social workers. All I can do is "sigh."....as I listen to her now..in the other room pretending to cough..so she can complain. :-(
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babziellia Jul 2020
OMG! My mom doesn't have dementia at all, but I can so relate to several things you said! Needs attention most of all. I asked myself the same question, Where did my empathy go?

At least I have homehealth still coming to the house, but even my doctor told me to get away an entire day. With Covid, where do I go? I don't trust hotel rooms, certainly not going to camp in this heat. My hubby told me I had to take him too, lol. But where? plus, could I find someone to stay with mom. Normally, our house has everything I need for a vacation except the beach. We joked about telling Mom we would be gone, but then sneaking around the house. I'm sure we'd run into each other.

My mom actually can do a lot more for herself than she wants to and for 90 yo post stroke and broken femur in the last year, she can get around ok with the wheelchair and the walker, although she complains for me all the time. She wants me to do for her, and I refuse. I don't even argue doctor's orders with her anymore and I walk out a lot. Her negativity and depression has cast a shadow over our house like Voldermorts deatheater signal in the sky. I think that's why my empathy has gone.

I escape outside as much as possible and I'm working on a place to go for a day that I would enjoy.
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