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.
No good answer. It takes a team and unfortunately a manager. Like a project manager.
but now it’s my husband, and I’m looking for conversation. Because no team here.
My husband had a massive stroke at 54, I was only 43. That was a little over 5 years ago. I've managed to keep him at home and care for him, but it has been the hardest 5 years of my life. Beyond the everyday care and all his physical needs, the mental and psychological impact it has had on me is exhausting and unwavering. He is non-ambulatory and non-verbal and has declined to being bedbound recently. Because it is soooo hard to find decent help in our area (the boonies) I've been alone giving him care most of the 5 years. I've tried agency help a few times but have found a HUGE lack of training and experience in handling the needs of someone such as my husband which made things even more difficult as I was left to train the people sent to help us (which I wouldn't mind except they would pull their worker after I trained them and send them elsewhere). So the result of 5 years giving care to him is me now at 49 with a broke down body. Yet I still get up every morning with a smile and positivity to set the mood for the day. Because I love my husband dearly, I am able to look past his lack of empathy, gratitude, compassion and romance... all because the stroke damaged most of his frontal lobe. Together 26 years now, I can't even imagine a day apart, yet I have sat sobbing at 3am after doing a complete bed change and total bed bath due to a river of diarrhea that swallowed the bed controller and the tv remote. But I was good with all of that until I was done, bagging everything, sweating, exhausted, finally crawl into bed and just drift off only to hear him yelling. I go out to figure out what is wrong.... the tv is on the wrong channel and that is all my fault, none of the hour long clean up was appreciated, why should I be tired and a bit grouchy, and so the ugly looks and his version of cussing me brings me to tears. I go to bed and pray that God takes him before he gets any worse and declines to the point I need to place him somewhere, that would kill us both. Bless you all and I hope each of you have an easier day tomorrow..... It's never easy, but some days are a little easier. Hang in there.
cheers.
I don’t want to sound like a victim. I have always been strong and independent, but I am now just getting through the days hoping for the end to happen. Oops...bad girl for thinking those thoughts . Who knows...once my mom is gone, maybe I will be lost without all the laundry, sounds and repetiveness of each day.
I really could relate to your story and I only wish I knew who you were as I would love to keep in touch.
janet o
People who have never done this will never understand it until they do it themselves. You can explain it to them until you are blue in the face. They will never "get it" until they have done it.
It is a totally different planet than taking care of children. As a caregiver, you must not only manage your own life, but you must manage the life, finances, and decisions of the loved one you are caring for. It is super overwhelming even if they are in a facility. The constant worry and concern never leave. All you can do is lean on God and pray for strength.
Just know that all of us here know your pain and what you're going through. We've been there and it is not a walk on the beach.
God bless you for the care you are giving your loved one and stay strong.
Don’t assume that assisted living is off the table. Your mother’s perspective may have changed as she has dealt with the isolation this year has brought us. And promises can be broken, especially since you had NO IDEA that life as a caregiver would be like this when you agreed.
The first step is to recognize the problem, like we have here. The second step is to find ways to improve the situation. Talk to a counselor, life coach, or social worker. There is away.
As for now, we should take small breaks. While it's not much, it's essential.
we will make it through, with support and hope.
All the best
While we each have our individual circumstances, your words are so eerily similar to what is happening to me.
Last week, I reached another breaking point. For various reasons, I’m not ready to move my mother out, but I NEED real relief.
My husband helps, but the effort is minimal, and everything is on my shoulders. Not just the caregiving and running the household, and taking care of my mom’s time consuming business matters. Everything. From car maintenance, to home repairs, to figuring out how to move while juggling everything else. Changing cell phone companies and getting new phones (nothing went smoothly) has eaten two full days of my time, while my husband watches sports on tv plays games on his iPad. I find myself angry, resentful, and frustrated ALL THE TIME. I’m using food and alcohol in unhealthy ways. I know this is killing my spirit, mind, and body. There is no end in sight, and the only end means more pain and guilt.
blog because we’ve all walked these shoes)
when things get bad even 24 hr care not enough because your home becomes a hospital and you’ve got others there day and night with no place to turn .
you or LO need to live out ... find best situation you can afford !!!!
nobody can do this ... and if you think your LO is liking this situation ..... think again !!!
there’s no easy or good solutions to this madness
best of luck !!!!
Your post nearly had me crying. I've broken down so many times, and each time it takes a bit more of your soul and there comes a point where you (the carer) aren't able to properly heal anymore. The scars build up. So I echo your warning - if you don't have to do it, DON'T! Even trained carers/nurses struggle when it's their own LO.
Mother and I have just had a ridiculous 5-minute conversation about how to make a sandwich. Basically, she expects me to do every little thing for her every day. On top of the big health dramas, it's little things like this... all day, every day.
I know it's not forever. It just feels like it. xxx
Lastly, I do feel like I've aged through these years and have let my own needs go. I'm in the sandwich generation and haven't had a vacation in the past seven years. I've also sacrificed some of my own family's needs for sure. There is one decision I've recently made, I told my father he may have to spend a week at a nice facility that provides respite care until I return from a weeks long vacation. Of course, I'll still worry a little while I'm away but I need to enjoy the rest of my life (I just kissed my 50's goodbye).
All (almost all, but there isn't time enough) of what you say is true.
I hope this will be some comfort to you: I have undergone almost every experience you describe so well and here I am to tell the tale and to sympathise in every way with the feelings.
So where do I take issue?
It IS a choice. You DON'T have to do it. Your mother's expressed wish never to go to Assisted Living did not and more importantly does not bind you to provide the alternative.
Other factors may, though - what are they?
I have and continue to help her with her expenses but the issue at hand is what do you do when things that she normally has have been stripped from her and she isn't getting the help for documents, social services, and other items with the lack of sympathy and proper assistance that should be a given as an aging senior.
Why is it that seniors do not get any priority similar to the military, they may not have served us in a war, but they have served us in all aspects of work services and now is their time to rest and retire. These two groups should be first at the head of the line for medical as well as housing this is a shameful fact that needs to be corrected immediately.
As a solution to this crisis for these two groups, why are we not looking into more information on the Tiny House Movement and or a modern version of Hostels for these individuals. 400sq ft homes that have the basics that are needed similar to this realtor.com - https://patch.com/connecticut/across-ct/ct-tiny-houses-sale there needs to be an accelerated law put on the books so that people can live out the rest of their lives in a peacefully and can be set up for these two sets of individuals only and as things start to progress create villages where there are on-site nurses and other healthcare professions in these villages as well.
This is a problem with the solution provided can we get the government to start doing things that help the people who put them in office for a change.
I think when we "promise" anything we do not intend to break it. Marriage vows are an example. I am twice divorced but it is not because I am flaky or because I am intolerant or difficult to live with. All my friends and family and my life achievements point in the opposite direction. I am tolerant and balanced and most importantly trustworthy.
I still felt the disappointment and the stigma around a "broken" marriage. Everything says it should last, vows are to be kept, marriages are for life.
Realistically though, contracts always come with conditions. Vows have to be over ridden if those conditions are no longer met. If a partner commits adultery (for me two strikes and they're out) or they develop something you just can't live with - then it's a rewrite.
The commitment to your parent at the point you promised 'no assisted living' is the same. You promised that with a set of conditions that presupposed it would be doable. That your mum would be a certain version of herself that you could still live with. That the future would not put your marriage or your sanity at risk.
I think we all want to look after our loved ones - come what may - but sometimes it isn't possible and at that point you need to be realistic about a promise you made.
Good luck and whatever you decide, this is not forever! x
Her health has been fairly stable with some bumps in the road over the last few years until the bottom fell out in December 2019 when she fractured her pelvis and then subsequently ended up inpatient due to her advancing liver disease in Jan 2020. She spent Jan-June 2020 in and out of the hospital/ rehab at which time we made the decision to move her in with us. She is camped out in my Dining room currently awaiting the sale of her home and the start of the mother in law suite addition.
we wanted to only add 300 sq ft for bedroom / bathroom simple and clean but due to our stupid township regs we could not do that and now have a major addition/ remodel on the 1st floor of our home to undertake. i have been coordinating multiple doctors, home pt/ot/nursing, home health aids (my angels that I cannot live without), contractor estimates, and township zoning hearings.
My hubby is an absolute angel but he is getting frustrated because he sees how this impacts me and how little support my brother gives us. I had to beg him to "baby sit" mom for 4 hr 1 sat night so we could get together w/ another couple who live a mile from home. we had another Saturday night that we went out with a few friends and I decided to have a family friend " baby sit" mom and put her to bed. She has worked for us and I trust her so from now on she is my go to for evenings. I have not even tried to look for a job because most days there is a parade of at least 2-3 people in and out during the day to care for mom which requires my attention and if her HHA dont show up I have no one to care for mom. I know my hubby wants me to work, but honestly, 11-7 would be the only time i could work which would mean no time to sleep.
Some days I want to get in the car and drive far far far away and never come home. My big outing this week was going food shopping so I could be alone and listen to my favorite pod casts and have some " me time". I only have 4 legged children so Im sure those of you who have had human children can relate i guess.
I am so happy to have this forum to express my feelings without judgement and condemnation. I started a workout program and have continued with my nutritionist to keep my health up because if something happens to me they are all screwed in my house. I told my mom if something happens to me she will either endup in my brothers basement if she is lucky or will end up dumped in some nursing home b/c my SIL would never want my mom there. She doesnt want her own parents in her home living there.
My saving grace is my faith in our almighty God and my guardian angels out there. I am just praying that mom gets through her current setback/health crisis and is able to regain her strength again. Thank you and sending love and prayers to all of you !!!
It's crazyfying.
The only thing that helps, is being a part of a supportive group. Consider joining the Alzheimer's/Dementia Caregiver's FB Support Group. It's a place where you can vent without judgment.