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Im living those exact words!!!
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Powerful.
Right on.
Thank you.
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Excellent, honest post describing the harsh reality of caregiving. My dad recently died leaving a mom with mild dementia. Husband and I care for his 92 year old aunt with more advanced dementia. I am SO glad they live in their own spaces and we started out with hired caregivers, increasing hours as needed. Even though I am not physically doing all the work, the CGs call all the time abt issues so there is no actual free time. I do drop ins as needed.

I have learned to take mini breaks and silence my phone. I monitor all the care and perform other duties from a distance like bills, insurance issues, doctor appts, medication ordering and dispensing in pill sorters. Mom will probably outlive her resources because she and dad did not plan or seek financial advice for retirement.

It is exhausting! Sister helps me when she can but has had a year plus recovery from covid. Husband's family not interested in the day to day details.

Good luck to you and I hope you can find
some peace for yourself.
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Your warning to others who do not want caregive is valid.
It is a choice. You could still place your loved one in care facility.
When my dad came to live with us, I was exhausted, and angry. I joined a support group and took a vacation, it helped. I also prayed every morning.
I spent time every day in God's word. Try that, see what happens.
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The absolute truth.
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Hi Merediths. You are allowed to change your mind. I similarly told my mom she would not go into a home but circumstances changed in her health and my health and well-being. I had reached the end of my ability to care for her properly and keep myself sane and healthy as well. You.Must.Put.Yourself.First. Good luck!
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You have captured my emotions perfectly. I finally admitted I had hit the point where I was no longer capable of being the kind of caregiver I wanted to be for my husband with dementia. I placed him in a small residential home 3 weeks ago. That’s a whole other source of guilt, but I’m working thru that with the support of friends and family.

With no LTC insurance, it’ll be quite the balancing act financially, but I’m learning to breathe again. And catching up on sleep, my own medical appointments, old friendships, and interests. My entire being was consumed with dealing with his anxiety, delusions, and false memories. He’s still upset over stuff that didn’t happen and confused by what was real, but I can block his calls after talking to him 15-20 times a day, knowing there are people who will deal with him if he gets too bad. If there’s a true emergency, the home will call me. I see him twice a week and talk to him several times a day, but I’m learning to live again.
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Beautifully written and every word is true. No matter how much you might love your parents, it is the most difficult role to take. I chose not to have kids. When my mom tells me I didn’t know i was going to become the parent, she is right. I advise everyone to purchase long term care insurance. If you don’t have the income to afford it, I advise you to lower you cell phone usage and out those funds towards the monthly premium. Find something you can cut because we all need it.
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💕
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Yes. You nailed it! The part about self care is absolutely right on, and sadly so is the toll on marriage.
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I am caring for my 61YO wife not my mother. I have not been able to read all the posts as I know at any moment my wife will awaken and call for me, but by what name I do not know. It may be "Daddy, Mom, Mommy, Honey," sometimes, although rarely "Gary", and more likely "Hey Man"

I never promised Not to put her in a facility, in fact since November 3017, she has spent about 28 months in different facilities. I have chosen Not to place her in a facility yet because after surgery this past June, when she spent most of the time on quarantine ( the first 14 days as per state requirements, at that time, on the 13th day, she came in contact with an employee who had tested positive for COVID so she was quarantined a total of 27 days of a 5 week stay.) All therapy was in room with no exercise machines, that she sorely needed.

She went into and left the hospital with NO bed sores. She left the SNF with a stage 2 "pressure sore" about the size of a 50 cent coin that took months to heal at home.

She is now either left in her bed or wheelchair. I am allowed 10 hours help per day, but with COVID, at best I get an average of 6 or 7 per day. I feel I am blessed to get that. However, the majority of the aides need help in turning her, bathing her or using the Hoyer lift for ALL transfers. She is afraid whenever a different aide comes in and with advanced dementia, any aide that is not with her for 3 or 4 days a week for several weeks, she doesn't remember them. The aide we have had the longest was out for 2 weeks and she does not remember her, and is not yet comfortable with her.

Yes, at times I feel the way you do. I get frustrated with her "demands". But then one of the aides will say something like "You're so good to her." or "How do you have so much patience?" That spurs me on to try to do better each day.

Yes, I try to go to bed by 9:30 although rare, and I am usually unable to fall asleep before midnight. I'm awake most days before 5:30 for some quiet time. Sometimes it will be 3 hours before she wakes up, others only minutes.

We have an 18 YO special needs adopted son, former grandson, who I am able to leave with 4 nights a week for about an hour, as he is working on his 4th Degree Black Belt in Karate.

Yes, I know how you feel in many ways, but I have chosen this route that I am on. How much longer can I do it? I don't know. Is it affecting my mental and physical health? You bet!

Did I mention that she is Bipolar and Narcissistic ?

I am 66 and have been disabled since 1996 from a back injury that year.

I hope you can find some time for your self and also for you and your spouse, Enjoy him while you have him.

May God bless you.
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Well written. I moved in with my parents. I am a widow. I had taken early retirement at 60 and went to Africa to become a principal of a school. A childhood dream come true. But I (since I was “retired” and the eldest) was called upon by family to return to take care of my parents. I was told they needed me 24/7. So I finished out the school year and returned. Turns out not only did my parents not need me 24/7 but they really didn’t want their child moving in and taking over!! And then Covid hit. You mentioned the recall of childhood memories—-the ones I thought I had dealt with and put in the past—put soon realized I had not...and did NOT like reliving some of the experiences and feelings of never doing anything right or good enough.

After a 1-1/2 years I moved out a month ago. I now have my own apartment about 10 min away. I set boundaries. It is soooooo much better!

Thanks for writing. Realize you still have choices. Talk about your initial commitment and the realization that it may have not been the best decision.
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Abusive when younger, now temper is out of control, mean...........I am 79.......he is 76
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My mother passed away last year, and she was not at home for the last 6 months of her life, but your words took me right back. There is not enough self care in the world. I, too, wanted to provide my mother with the final days she hoped for, but the reality was far from it. The stress and lack of support took its toll. I became a rager. I lost my compassion because I received so little, from her as well as from my family. I was entertaining thoughts of suicide. I was working full time and attending full time college classes too, and I was expected to take everything in stride.

My plea is for the people on the periphery. Please step up and do your part. We don't always recognize what a difficult position someone is in. Believe me, the primary caregiver needs your support.

I feel a lot of guilt for being so angry with my mother. Also have since learned that anti-depressants can flatten the emotions of those taking them. That may have compounded my mother's lack of empathy or emotional response. She was never a warm person to begin with.

I don't know if I would argue against caregiving at home, but I will say that I had no idea--zero--what I was getting into. It is nothing like having a child. I do not want to ever put my son in the same position with me.
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Although I agree with everything & more I don't agree with the last sentence. Family takes care of family no matter what. You'll have a better conscience & you'll know you did the right thing.
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Amen. I'm with you . My one day off & dad decides to drink so of course he fell again. Sounds mean but tough love letting him stay on floor overnight. It's heated, he's got blankets and pillows & even a phone! 911 I tell him but he thinks I'm 911. I can't lift him from floor , dead weight hurt my back now but I can transfer when he's in sitting position. I'm ready to throw in the towel but no if he goes to assisted living hell die,s so yeh , amen.
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You are so not alone. One day early in to caring for dad and trying to meet his never ending demands and solve problems, I told my husband, that he needed to understand what I was going through, that I needed his support and he needed to listen to me. He did do a lot better after that.

one time I was so down and depressed it honestly seemed appealing to not wake up the next day so it would all go away. I wasn’t going to take my life, but I could understand how someone could.

I did get counseling which helped to have a person to bounce things off of and get advice. I set boundaries and realized he had lived a good long life into his 90’s and that it wasn’t my fault he was now dying in a miserable life with dementia. That I have a life too and I was not about to totally sacrifice it.

Sounds like you needed to vent and am glad you have a safe space to do so. Also pleased you are going to a therapist. When after I said to him that my dad was moving here, my friend who was taking care of his mom told me "your life will never be the same"...little did I understand what he meant.
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I see nothing wrong with telling your parent, "Mom, when we had you come live with us we did not know how it would work out. We love you so much, and this is very hard to say, but we think you would benefit more from living in a home where they would be able to take care of your needs so much better than we can. Here are some of the places you can choose from for your future." Don't put the focus on your burden of taking care of her, put it on you wanting a better situation for her, and research a few places you feel would be appropriate for her to go to. I don't know if that will work, it depends on how wily she is in getting you to keep taking care of her. You should not be sacrificing your own life.
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You hit the nail on the head!
I feel your pain as I am sole caregiver for my husband who has Alzheimer.
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Very well said. I’m taking care of my live-in 95 year old mom too. I never had kids. You’re correct there’s some joy in having kids, not so much with an elderly person. It’s very difficult, plus watching her get more & more frail everyday is heartbreaking. She’s still quite independent yet asks me every single day “are we going somewhere today?” So I take her for a ride & that satisfies her. But I do feel cheated in that my life is not mine anymore but I’m praying the rewards will out way the stress. Hang in there a cliche I know but we are given this assignment and accepting it is half the battle.
God bless.
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Nobody is ethically or legally obligated to care for an aging parent or spouse AT HOME whose level of care has become so extensive that it is ruining the physical or emotional health of the caregiver.

I wish people would stop promising a loved one that they will "never put them in a nursing home or assisted living." People do not realize or understand the reality of caring for a declining elderly person.

If each of us lives long enough, we will get to the point where a nursing home may be the safest and most humane option for all concerned.
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We know! Agreed.

Caregiving is like taking care of a baby, a baby that has a car, a driver's license, a checkbook and a credit card. Oh, and maybe a lawyer.

I am the caregiver for my husband (87) and care manager for my mother (95). I get stuck preparing their taxes every year. Oh, and mine, too.

Here are two bright thoughts to remember:

The supervisor from the Area Agency on Aging told me that my mother needed to be placed and THAT SHE WOULD ADJUST. I swallowed hard and trusted the supervisor. I placed my mom--very much against her will--and she adjusted. Never would have believed it.

I felt like you feel for the last two years and would not hear of getting help. I didn't want to spend the money and then covid came and that was my excuse. A good friend nudged and nudged. I finally gave in and got help three hours each day. My helper "does" my husband, his diapers, the bathroom, the floors (which are often peed on...), and his bedding. Also dishes, and laundry. I would never have believed what a difference this has made in my mood and frame of mind.

Life is worth living again.

Do it! do not delay. If your mom has some money, use it! Help is so much less expensive than a retirement center or nursing home.

You have a life, too. Live it!!!!!!!!!!!!

Good luck!
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My heart goes out to you! What a raw and honest post. Thank you for sharing your situation and your feelings.

I am new to this forum. Your post was the first one I read. It took my breath away!
Someone else understands!!

Full-time caregiving is isolating, overwhelming, exhausting and frustrating. Words fail to adequately describe the emotional roller coaster we are riding.

AND, people who are not in our situation do not get it!!! Unfortunately, they are often the ones who offer “advice.”

I am so sorry you are going through this MOST difficult experience. While it doesn’t change anything or make it any better, I hope you find a small measure of comfort in knowing you are not alone...I know I did.
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Wow! I believe you expressed feelings we didn’t even realize were in fact there!
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I am so sorry you are going through this. Much the same was with my mother, but there comes a time that it is not the best for your Mom or yourself to continue with what you thought was best at the time. The time has changed and you need to make the best change for all. This is when I researched the best home for her. They were able to provide 24/7 care for all of her needs.
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Thank you thank you thank you for posting this. Never have I ever read anything that's resonated with me like this post has. This is exactly how it feels/has felt for me as a caregiver to my grandparents. My grandfather died in September so now it's just my grandmother that my mom and I look after but with her personality it is often like caring for 2 people.

I'm 35 now and feel like life is passing me by. I often wonder what my life would've been if I had guts and didn't come back home after college. My relationship with my bf has taken some hits also. He understands the caregiving luckily because he cared for his grandmother towards the end of her life but his situation was not like mine so he doesn't get my anger/frustration/sadness. He wants children and I feel like after this I'm not going to have the time, energy, or mental capacity to care for any. It's just so many things that not everyone understands but YOU nailed it. I pray that you have some peace, love, and joy and that you push through everything.
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Thanks for sharing. My first thought is how different this is from caring for a child. A child will grow and blossom and there is an end in sight to your caregiving fir a child. With caregiving for the elderly or infirm, there is no end in sight and no getting better or easier. Throughout our lives, we do a lot of difficult things, all in the hope that “this too will pass” and things will get better but, not so with caregiving. Generally, it gets worse. When you “do something for yourself”, the walk or hot bath or whatever, while necessary, it doesn’t remove anything from your plate - it just pushes it back and you do it later. Just understand, all of these feelings are normal. If you have taken this on, you are a strong, wonderful person (not invincible but strong). When feelings of doubt and guilt creep in, remind yourself of that.
All that being said, I have to rely on my faith more and more every day. God has me right where He wants me and I will respond to Him one day at a time.
Thanks for sharing this though. I just hope that people contemplating caregiving get the message.
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My goodness, you do have a way with words. For the one that said something about you saying it isn't a choice; I'm going to assume they were not THROWN into the deep end of the pool when the hospital called from another state away and you had to take off running like I did. A promise to the one you love when they were not in the throws of such an awful condition does not mean you cannot change that when it becomes overwhelming and you need more for them than you yourself can provide. My heart and prayers are with you. Thank you for sharing that.
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Yes , and I’m so sorry you are having to deal with this , it’s truly overwhelming.My sweet husband developed ALS , his started in his voice , and then he couldn’t swallow anything by mouth . It was heartbreaking. He was fully aware of everything going on . He into the hospital for a procedure and they recommended an assisted living facility for him , when released . I couldn’t do it , and he came home to die . It was the hardest thing , mentally and physically I ever did . Everything you described is true . My daughter moved in the last 2 months , so we were lucky, and family and friends came by daily .I can’t imagine doing this alone , as you are . After being married 50 year’s I was honored to do this last thing for my husband. I hope you might find a facility for your mom , or find a caregiver to help you out . You need it , the stress you are under is real .Please take care of yourself.
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If either Mom or Dad are veterans, help is available through the Veterans Administration, but only if loved one is in an assisted living facility. Choose a facility and ask the director about this program. They helped my mom as dad was in the navy.
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