OK, I'm fog walking still. As you know, I lost my DH during the first of December, but just feel as though I'm still in a fog. I've done all the paperwork stuff, had services in the manner we wanted, and was comforted by the sharing of love with our two grown children and family. Now I'm alone, living in 'our' home. I've moved 'the chair', bought new mattresses and changed the floor plan of the bedroom, which I still can not sleep in, and am trying to plan on updating our home, traveling, and all of the other things you just grasp at to make it all better, yet I constantly sit crying? He would hate that.
I think of how I cared for him, and I am satisfied at my attempt, some of the time. In our last months, I feel I should have shown him more affection, but was so weak and broken myself, that I just met his needs, and avoided those hugs or intimate moments, knowing they would require so much more of each. Under the circumstances he couldn't understand, I was just barely able to even care for him. I had no sleep, and was physically failing myself.
Now, two months later, with a bit of energy renewed, I am thinking more clearly, and dragging myself through feelings of guilt of things that I should have done more of. I know, back then, there was no way I could have given of myself any more than I did, but now, I sure wish I had been able to think more clearly. I had no idea I had let myself become so beat, so unable to realize how little I was able to comprehend or do. I should not have been so independent and self assured that I could take care of so much on my own. My ONLY relief was a three hour window on a Thursday afternoon to take care of everything,... shopping, Dr. appointments, etc. I was just barely functioning to make his life go around. Again, he would have been so against me doing this.
Anyway, ….for those who are still needing to care for your loved one, please, please stop to think of what you are NOT able to do, instead of what you are doing because you think you can. Yes, emotions seem to dictate your decisions, but just maybe your love is best shared when your own energy is renewed and then spent making sure your loved one is in the best environment to meet their needs. I so often think of what it would have been like, to have had the opportunity, to have seen him through these eyes of renewed energy. What did I miss? Decisions based on emotional need just may be what is worse for both of you. My second thoughts are just overwhelming me. Try, please, to consider that you just may not be deciding and thinking with a clear mind, but emotional attachment and memories. Just say'n!
We all have second thoughts. Oh how I wish I had said this, not done that, etc. But the truth is we are who we are, we can't become someone else just because we are thrust into the CG position. But your thoughts about not trying to be all things to your LO are important for CG's to think about, and I know how hard it is to do as you advise. Your message is well delivered, I hope some CG's will take it to heart. Not easy, but they should try.
Thanks for taking the time to give everyone the benefit of your experience and the warning that decisions and actions made on emotions can work against us. You did the best you could at the time, and no one can fault you. We all get so tired and beat up, it's a wonder we don't just blow away in the wind. I'm glad you're feeling more energy now, and I know that in time, you will be yourself again. Well, all right, a self without your dear husband, but still a self. God bless.
But when we are in the midst of care giving a loved one how else can a decision be made except through emotion? I have regrets of not paying attention on the last night my dh was at home before the trip to the ER. I keep thinking I should have done more than just allow him to thrash around. It keeps haunting me. The next time he was at home hospice was here and he was dead in a week. Janny, my dh passed Oct. 2 and I'm still in a fog going to griefcare and reading all the material. One thing I read is when you love you will grieve. I'm sure you did your best. Just keep on keeping on and I have found each week is a little better than the last if only just a smidge.
My dh passed on Aug. 28th and I still cry every day. Today was the first time I went out to eat and sat down inside and ate alone. It wasn't easy. There is no part of this that is easy. Please don't beat yourself up all we can do is the best we can. You served him well for a long time and you did the best you could with your health as a factor. This is not your fault at all. But, it is still early for you and crying is part of letting go. I am sure many here who have their star cry often months and years later. Hugs....You will feel better when you get rested. Take care dear one.
janny*, this really hit home with me. How you did way too much, and had no energy left for extra love. You know, my guy was way further along that most people knew, and as I look back, I really cannot believe how hard I tried to make it work. For those of you that think you need to be ALL, at the risk of your health, listen up to what janny* says. And take it from me, I almost felt like I was close to death last month, with the worst lung infection and sickness I have ever had. Due to catching a bug, and exhaustion and emotional pain to make it worse. And, I am very strong.
thank you for this thread janny*, and may you continue to heal and not question yourself.
janny*--I really hope your words are taken to heart by some of our Spouses. We can care for them to the end, bu we must be sensible about it. Theis nothing wrong with geting help in or using Day Care, or Placement. We are still in charge of their care. No one can take our place, but being the Caregiver does not mean sacraficing our health and wellbeing. If we don't take care of ourselves, there is the possibility we won't be able to care for them to the end. I've tried to promote these ideas since I've been here. I learned it early in my Caregiving, when I ended up with a bout with Clinical Depression. I was going to do it all--be there for our daughte,take care of DH,the House, the bills, etc., etc., etc. There isn't anythiing much worse than feeling that your presence here on earth really doesn't matter; that in fact, everything would be better if you just disappeared. I recognized that it wasn't right headed thinking and I got help. We are the Caregiver. We are in charge of our LOs care. It is up to us to makle good choices in seeing to that, and good choices include taking care of ourselves. Use DayCare, in-home help,Placement--if needs be. Taking respite. starting early with in-home help szo our LO gets used to others helping besides us, in case of emergency. Coming from someone who "did it all" and is now so worn out she doubts herself and is having a hard time grieving because she feels she may have short changed hehr Lo and herself by being to worn out to express her love fully at the end, maybe wiil ring some warning bells. There is nothing wrong with having help, seeking help, accepting help. We have to concentrate on the things ONLY we can do. Anybody can wash dishes, do laundry, go after groceries. As you said....Just sayin'.
Janny*, former Arkansas head football coach Frank Broyles says it very well in his "Coach Broyles Playbook For Alzheimer Caregivers" when he devotes a full chapter to "Taking Care of the Quarterback". He speaks from first hand experience in caring for his own beloved AD wife, and equates the caregiver to the quarterback of the football team, stressing the importance of caregivers taking care of themselves so they can continue to be effective caregivers. The book used to be free through the Alzheimer Association, and I got lots of good help from it as I began my own caregiving journey.
About 2 months or so before my dh passed and I really thought he had maybe 6 months to a year left and I knew I was at the breaking point. I placed him in an ALF for two weeks. Don't think I have heard of anyone taking respite for 2 weeks...but, I knew my body could not hold up for the final months if I didn't get totally rested. The first week I slept most of the time and watched rented movies. I could feel myself getting better by the second week. Now...that my "caregiving" is over, I know I could not have made it without those two weeks. So...you that are getting so weary and tired, listen to your body and take some respite. Not just a few hours or a day here and a day there. Get totally away from your burdens if only for a few days. It is the best thing you will ever do for yourself and you spouse.