I wrote this at 3am when I was feeling utterly overwhelmed and in despair. I wish someone had told me the honest and harsh realities of being a primary family caregiver. Anyone else feel this way?
My editorial warning on caregiving
“It’s kind of like taking care of a child.” I've heard it. I’ve said it. I don’t have children, but I am confident I can make the bold statement that no, it is not like taking care of a child. You can choose to have a child. Family caregiving is not a choice. It is thrust upon you and ridiculously expected.
I'm positive there is joy in raising a child. I am also positive there is no joy watching your loved one slowly die without the dignity they deserve. It is heart and soul crushing, not rewarding.
Meanwhile, your life disappears. The person you have always known you were becomes in question. The where, how and why of fitting in outside the confines of the caregiving home fade away because you can rarely leave the confines. The world moves on without you. All you can do is helplessly watch.
Say good bye to a good nights sleep. Interrupted sleep becomes the norm, setting you up for mental and physical ailments you will have no time nor will to address.
The advice you get is, self care. Trust me when I say, there isn’t enough self care to properly deal with the physical, emotional and mental toll family caregivng will take on you. No walk. Nor yoga or meditation. No hobby or hot bath. Body, mind and soul are pierced, deeply.
“What your doing is so full love.” That may be, but how it really feels? Desperate. Nails on the chalk board. Suffocating. Death of your young, healthy soul. You get to the point of just wanting the person to die so they would not be suffering and you would be free, which quickly turns to feeling like a pile of selfish sh—. Say hello to low self esteem.
And I haven’t even touched on the firestorm of childhood crap it brings up to be taking care of your elderly parent. Let alone the all encompassing grief of witnessing the slow, sad demise of said parent.
Oh, and your marriage. Yeah. That will take a direct hit as well. No matter how supportive your spouse is, your marriage will not be the same. It will become a struggle to find time just you two and eventually the only thing you have to talk about is caregiving. The threat of growing apart becomes heartbreakingly real.
No matter how much guilt you feel, move through it. Do not put your life on hold. Do not live the life of an elderly person when you are not in fact elderly. Because that’s what happens. You eat dinner by 4 and go to bed by 8, with no substance to your day, just endless motions of caregiving.
Talk to your parent about options; help in the home, assisted living, etc. When mom moved here she stated she never wanted to go to assisted living. We agreed. Now we are stuck is this sad, perpetual purgatory that could last for years.
My warning to you, to everyone....if you don’t have to, don’t do it.
Right on.
Thank you.
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.
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.
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.
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.
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.
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.
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.
I feel your pain as I am sole caregiver for my husband who has Alzheimer.
God bless.
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.
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!
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.
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.
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.