I ask this because I have. I think daily about escape from this prison of servitude that has systematically removed me from the joys of aging and of being a happy participant in and a planner of, birthdays and holidays-which were always my favorite things, and now bring sadness and dread because I no longer have the resources or the energy to do, as well as the daily pain-pain of watching this man drift away in ways that, in themselves are equally tragic to both of us and have no positive resolutions. Yesterday was a good day. I am grateful for it. But that was wiped away at sunrise as he woke with confusion and all that goes with it. The physical pain that my own health issues bring to me daily that I struggle to deal with in order to give care, is often overwhelming. The pain I know he feels somewhere in his confused mind is so sad. Please know that I have, and will again, call a hotline. This has been a very positive experience. I have sought and will continue to seek, counseling. I have people who love me and who I love. I know that ending my own life would cause them tremendous pain, yet this all seems just like a terminal illness. I am not "crying out for help". I sometimes refer to this life experience as "a long day's journey into night", to refer to the play. But some days and in the dark of an interminable sleepless night, I just want to be gone. I am hoping to start an honest dialogue with caregivers and professionals.
In reading your post you mentioned that you sleep a lot. It sounds like you are in major caregiver burn out/exhaustion and possibly anxiety as well. Talk to your doctor about it. My panic attacks/anxiety were rearing their head when I was going through the hardest time with my honey between Feb and the time he got out of rehab and I found myself either sleeping way too much or not being able to sleep. I have had strokes (13) and have a dormant seizure disorder and due to the stress did not want either to resurface so I talked to my doctor and it helped. Besides the heart meds (diagnosed with heart failure in 2003) and the gabapentin (for the solid headache I have had since Feb 2016) that I take he added a mild anti anxiety med. I only take a half of a pill at a time of the anti anxiety med as I have to stay sharp to take care of my honey's IV but it definitely helped and allows me to maintain my focus. If you have a hobby you like...work on it when you get a few minutes...anything that you enjoy that will relax you. Be sure to take time for yourself even if it is just a few minutes or an hour a day.
Hang in there and please let us know how you are doing.
She, I am just so sorry. You and your family have been dealt such a series of mean, below-the-belt blows.
And yet. Here you are still standing. And very much needed, as I know you know.
Could you try being a bit impressed with your own strength?
What”s worse for me is the burn out I’m feeling. I’m just waiting for her to slide back down into helplessness and I resent it. I’m tired of being the cheering section. I’m tired of being the problem solver, the fixer upper, the penny pincher, the repairperson or the contractor. She doesn’t want to be a burden on anybody so she relies on me! I don’t know anything about fixing the plumbing or why the electric bill is so high or why her blood sugar suddenly is soaring. I’ve been trying to do it all for ten years and I’m just tired...
Now I’ve gotten the family a little bit involved. Enough that they want to know why I spent so much on grocerie, why isn’t her calendar up to date, when is her property insurance due. Why can’t they learn what medicine she takes? I’ll still order it, count it and dole it out but why do I have to be the only one who knows?
My brother and sister are going on vacation for the next 2 weeks. Mom has been chair bound for 3 months already. Ya I dream of escape. Mom says I’m always sleeping. I don’t know how long it’s been since I slept a whole night thru. I’ve got her piped in right next to my head on a baby monitor hearing her breathe, watching tv, hearing her phone calls.
I want to help her have a quality life. She's not infirm just weak. That doesn’t mean I like waiting on her hand and foot.
I have to get a grip or I can’t call myself her caretaker anymore, I’m afraid. I don’t like the person I’m turning into that’s for sure.
She didn’t ask to be this way and the alternative is unthinkable. She’s always been there for me. I don’t want to have any regrets so I need to figure out how to get myself right.
That's one extremely good reason not to do it, if you are a member of a faith that teaches this. But I can't see that it's any reason at all not to discuss the feelings that surround it.
And Holy God, Tacy.
The night before the school term began, my son's housemaster locked himself in the garage with his car's engine running. This left his shocked widow in the position where the very next day she had to explain to some forty adolescent boys how the person who was responsible for their welfare felt he had no other option, when she herself had absolutely no idea why.
I'm not sure that other people even flit across the minds of those who have reached final despair.
"I have had suicidal thoughts in the past, but I would never act on them"
AND:
"If I ever have a suicidal thought, I do not entertain those thoughts anymore".
I think the issue is that this is a subject that bears discussion, not condemnation for those who might even contemplate it, and especially not moral or religious judgment.
Namvet, please don't get wrong... I am not playing down what you or she1934 are feeling. I am so thankful that you are not contemplating suicide. You don't say how old you are though if I am correct you are caring for your wife. It is hard watching someone you love decline or go through difficult times and if they have a difficult personality it is even harder.
I have actually grieved twice for the man I fell in love with 30 years ago. The first time was when he had his strokes 13 years ago and was initially diagnosed as being about age 3 mentally at that time (he is now at around 16 though he acts like a 5 year old at times). I still love him very much and it kills me to know that in all likelihood he does not have a lot of time left and I will lose the love of my life and my soul mate so I grieve silently so that he will not know. But I know I have to keep strong for myself, him and our two four-legged "fur babies".
Namvet...just as I told she1934... hang in there. You need to find time for yourself even if it is just a few minutes to do a hobby, watch a tv program or do something you want to do. If you can afford it (I have found out Medicare will not pay for non-medical caregivers) see if you can get a professional caregiver to come in for a couple or three hours a week ( even 8 hours) to give you some relief so that you can find yourself again and regenerate. I hadn't cried in 12 years until the time period of Feb to May and was ready to run down the street screaming when I found this forum. There are a lot of wonderful people on this forum who care. I don't know what I would have done if I had not found this forum as I had no one to talk to who could understand. Please keep posting and keep us posted how you are doing.
I'm so glad you have people you can talk to/lean on! They are your most precious commodity.
First She1934 how are you doing? How are you holding up? Please let me know how you are doing.
Everyone....Suicide is a taboo subject in society, but not as bad as it used to be. In the 30 years that I have been caregiving, first with my parents (I was in my early 30's) and then with my honey, whose caregiver I have been in one form or another for 27 years it has been hard. The only thing that has kept me out of the dark places was love, my faith, my inner strength and my art. Though my family is few and not geographically close, I know they love me as even though my honey acts like a horse's patoot I know he loves me as well. My art...For me working on my paintings is where I can lose myself and forget any worries or woes. Though I have to admit that when stress is high my creativity seems to take a vacation, but it comes back like an old friend. I have paintings hanging in France, Ireland, England and throughout the US and feel very blessed for this and the many other things that I have to be thankful for.
I have learned since joining this forum that I have to make time for myself or I am no good to anyone or myself. And I think that is a major key as well as having a wonderful group of people to talk to who are going through something similar or the same as I am. It is also important to take time out if nothing else to take a few deep breaths to clear my head when things get overwhelming.
I hope this post has made sense. What I have written above and knowing the pain that suicide can bring to others I care about (plus losing a dear friend to suicide ) has kept me from visiting those dark places that can make life seem hopeless. Y'all have a good night!
Mercy killing is OK to talk about, be voted on and performed but suicide cannot be acknowledged. Ridiculous....
Or what I call "soaring" music - the Hallelujah Chorus, Schiller's Ode to Joy - they transport me beyond the confines and challenges of not only caregiving but daily living . I'm never depressed after listening to such magnificent music; singing it is even more powerful.
Decades ago I sang with a university chorus; our first performance was of Carmina Burana, a powerful masterpiece in its own right. For the encore, we sang the Hallelujah Chorus. The emotional and mental elevation of singing that powerful composition, to an audience, is beyond description. It's literally transcendent.
And then there's literature. I think if the well known observation that "Music hath charms to soothe the savage (sometimes read anxious) breast" were to be adapted, it could be read that "Music hath charms to soothe a depressed caregiver."
Similarly, I would alter "If music be the food of love, play on..." (omitting the fact that that particular discourse changes tone after this marvelous opening), I would write that "if music be the comfort (or soothing balm) of caregivers..."
(With apologies to Congreve and Shakespeare for alteration of these magnificent truisms)
I think it's also very common to experience a strong desire to "escape" or flee from an impossible situation. Our nervous systems are built for fight or flight, that is just how we are wired. Your situation of being a 24/7 caregiver for your dad has taken a tremendous toll on you physically and emotionally, so take moments whenever you can to recharge and reboot, even just a little bit. I have huge admiration and respect for what you are doing, it actually shows super human strength and resilience, more than you realize. Most people could not do what you do day in and day out.
When I dream lately, I often seem to have escape dreams with my running or fleeing or getting out of some prison. And I totally get that you feel like you are a prisoner, because I often feel so stuck too having a 24/7 caregiving situation. It sounds at some level that you might yearn for freedom more than escape, to feel free to do the things you enjoy and be fulfilled and happy. The one thing that has kept me sane is to find more of those moments where I feel like myself, whether it's enjoying nature or having lunch with a friend.
I agree with other posters that you need more caregiving support so you can do get out and do some of the things that bring you pleasure. Make a wish list of things you want to do or are passionate about, post it on some wall or bulletin board, and check off at least one item every week!
Keep posting and talking to all of us. Sending you hugs and love and so much appreciation for having this conversation.
I pray. I pray through the darkness knowing if I can get through those hours of barely being able to breath thru the pain and heartache, it will get better. Even if it’s a little better, a little at a time. It always gets better, at least liveable, within hours of the darkest hours - that’s gotten me through a few of my lowest darkest times.
Do you have someone you can talk with, that too has felt like this? I think having someone, who has been there, understands and can listen without judgement, without taking over - just listen. That would be incredibly helpful. If you don’t, please message me. I’d be honored to be your shoulder and ear to lean on.
Also, for many years people have suggested journaling. I never really got into it. Recently? I wrote out my prayers - talking to “someone” takes a great deal of the pain off my heart, the worry, whatever is weighing so heavyily on me gets better, even so slightly if I write it all out as it flows from my brain. If it rambles. No one is going to read it. Just pour out your heart into the pages. That could give you enough relief, strength and hope to get to a safe spot.
When I’m that low, hurting that badly, my head is also spinning out of control with the pain, guilt, everything that’s wrong, my worries, etc. writing those out, stops the spinning, makes them seem more organized, you’ve thought each one through, it just, for me, has become quite therapeutic.
I’ll be praying for each of you. This is definitely a hard, long road.
There are definitly times i think i just cant do this all by myself one more day . But the next day gets better or the next. You might laugh . But there is this 'game" on the internet called " Secondlife" I go on there and just fine a beach and listen to beach sounds and gulls.. My secret get away from everything and everyone . You can go or do anything there . Dance , listen to concerts etc. Sometimes its a book . You need a different kind of escape
working towards. Not just day to day chore. I know those are endless :/
negative tips so far towards the negative, or even not just negative, but a seemingly
endless round of chores with nothing else. When LO's are mired in negative, whether due to PD, disease, dementia, outlook, etc, and we're their lifeline and the only ones to
make it all better, it's vital we don't get sucked into it ourselves.
There are both online and phone support meetings, face to face meetings depending
on the area you're in for many types of issues. I use OA (overeaters anonymous) and it can be a life saver to hear other supportive voices when I'm feeling stuck and eating for comfort. Certain foods can leave me feeling sick and dangerously depressed.
Face to face meetings are wonderful, and depending on the area there are many types
of groups to get involved in. May be caregiver support groups in your area too.
Getting out in nature even just for short walks, gardening. Making something, even if it's just a nice meal, or accomplishing something, a puzzle, sewing project, building project,
even finishing a chore, can give a much needed boost to the spirit. Volunteering even
for an hour here or there can reconnect you to the outside world.
All of these types of things can bring a boost to the spirit. Try and find as many small
things you can include in your day to life your spirits and shift the focus towards
the positive and life affirming. It's really tough to do when you're so tired and just
wrung out. But it really does make a difference. Best wishes to you!!!! ((((hugs))))
The forum has discussed suicide and depression many times and none of those posts set off alarm bells in me like SHe1934's initial comment did. I agree that the topic should not be off limits, it just happened that I found the wording of this post worrisome.
Caregiving can be so lonely and isolating - that's how I felt anyway-I'm glad you have people who love you -keep them close-Especially if you have someone who you can laugh through the tears with you -if that makes sense -
It's grieving too, as you said, of what was, or maybe in some cases what never was, or the way things have gotten. So glad people like you and others share your stories and experiences, and I hope you'll keep coming here and let us know how you're doing. Your experience and journey can help us too.