I'm Hitting My Limit
I am so lost right now and really need to vent.
I don't know that I can take the complaints, shadowing and delusions anymore. Perhaps it's because I keep hoping for something back, even though I know my DW can't offer anything back. I feel like a complete failure in this caregiving and wonder what kind of person I am that I can't just offer up unconditional love despite the hits I keep getting. Am I really that needy that I have to feel some sense of love from my partner who I know is completely unable to offer it back because of a horrible disease? Perhaps I am.
I don't think I can be any more disappointed in myself than I am right now while I'm also overwhelmed with resentment. I've lost my life, failed at my most recent job because of her care needs, my career is over at 58, I'm in debt to pay for a caregiver for respite, moved us to her dream location and all I get back is absolutely nothing but grief from her. And, I have it so much better than so many of you and here I am breaking down completely.
Gaaaaaaaaahhhhhhhhhhhh!!
Comments
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You are not a failure. This path we all are on and our LO is on is the hardest thing we ever have done in our lives. Please don’t be so hard on yourself. First of all you are doing the best you can. Yes your LO can be self centered but that is part of the disease. She too is doing the best she can. Hugs to you!
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One big hug to you.
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Be kind to yourself.
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Give yourself some grace. You are doing what you can do and the best that you can. This is not fair. Vent as you need to. I hope you begin to feel a bit better and can move in the best direction for both of you.
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You are not alone. I am sure everyone on this caregiver journey will feel the way you do at one point or another. Please be kind to yourself!
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I also feel like you do. As much as I try to make my DW at ease, she just cries and cries all day long saying she can’t remember anything and doesn’t know why. I lay in bed each morning dreading getting out because I know what is in store for me. Helping her shower and then helping her dress herself takes over an hour. By the time we are done I am already exhausted and still have to get through the rest of the day. Then the crying starts and I want to just tell her to knock it off but I don’t because she doesn’t know what she is doing and then the guilt comes to me for even thinking this. In between crying spells she will tell me how much she needs me and loves me triggering my guilt all over. All we can do is to try our best to keep our LO’s safe while they battle this terrible disease.
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((HUGS))
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There is a drug that is supposed to help with this uncontrollable crying (or laughing) you might want to to look into that
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Dear Cindy, you are nowhere near being a failure. You are a wonderful and loving caregiver. You are also human and you’re tired. Please don’t be so hard on yourself. Your DW is progressing in her disease. That’s hard to deal with. I’m sorry it’s so hard right now but you are definitely not a failure. Sending love and hugs.
Brenda
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I agree with the others; you are not a failure. It is very hard because your relationship is no longer a partnership and never will be again. I remember another poster once said that sometimes no matter what you do to please your DW, the person with dementia may not ever be happy. There is no easy answer; so sorry you have hit a wall on this journey.
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Be kind to yourself. You are going through grief. You are in the denial stage, hoping. We’ve been where you are. You’re grieving what you’ve lost and having anticipatory grief for what is to come and grieving what could have been. You will gradually move through the other stages of grief. It takes time. It’s a terrible disease for both of you. We’re here for you. Sending hugs and praying for your strength. 💜
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The commonly discussed stages of grief are denial, numbness, anger, bargaining, depression, and acceptance. Grief is individual and people may not experience all stages, or in a specific order. The stages are non-linear, and some steps may last longer than others.
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Cindy, you are an amazing person for standing by your DW like you have with little to no positive affirmation coming back. You are in the thick of the battle now, but at 58 you are still very young and have much to look forward to. It really hurts that we have to walk away from a work environment we enjoyed to take on the thankless job of caregiver. Besides losing the financial benefits, we also lose social interaction, camaraderie with closest co-workers, career goals, physical activity, etc.- all of which is irreplaceable in the caregiver role. They say one of the best ways to resist the negative drag of resentment and rumination during tough times is to maintain a positive sense of purpose and visualize goals for your future self. Unfortunately, in our situation (caring for a terminal patient) this means we need to envision self-actualizing our full potential without our LO by our side. This all sucks, and the present pain is so real. If we just keep moving through the fire we can be satisfied we did our best when life threw some of it’s worst challenges in our path. We can see ourselves as survivors who will find joy in whatever comes next in our life’s journey. Hang in there!
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Dear CindyBum, I truly know how you feel and I am sure most on this site have experienced the same feelings of failure, anger, hopelessness etc. This is a disease that can take down both the patient and the caregiver. You must fight for your sanity and your life.
I have gone from "I can do this" to feelings of hopelessness, depression and just wanting to give up. I have cycled through the grief process 2 - 3 times. From uncontrollable crying, antidepressants, counseling to even suicidal thoughts. My DH is now in memory care and I have felt like a huge failure, betrayer, selfish, ungodly etc. for placing him.
It takes time to sort all of these feelings and get to a place where you can discern the difference between the emotions and facts involved in our plight. For example, "I feel I SHOULD be able to care for my love one; I am a monster for not being able to do this; I am selfish." For me, I have concluded that some of my feelings are originating from a sense of pride in what I think I can do and not what is realistic. I even thought about bringing my DH home and then he had a paranoid episode and tried to leave the facility. Wow! Witnessing that, slapped me in the face to show that I wasn't capable of handling him with this disease. I also saw myself as selfish because of the anger etc. Guess what, the anger is part of your grief and is PERFECTLY normal because you are losing so much.
The only thing that has really helped me get through this is my faith. It has grown stronger. Some would question the existence of a God who would allow this disease. I have come to accept that life is hard and we all will encounter dark times in our lives. If we are willing to forge a strong relationship with God, he will get you through this. He has put people in my life who have guided me, things that I have read to comfort me, incidents in which He has shown me (twice) that I can't handle caring for my DH and that I am doing what is best for my DH. I could go on.
CindyBum, I have broken into a million pieces, yet, somehow I am growing and healing at the same time. I accept my limitations and embrace that I am a good person, who is trying to do the best she can and so are you.
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My wife is in MC and I still have a lot of these feelings. Our marriage was not good and should have ended years ago but didn't then 9 years ago came Alzheimer's diagnoses and I feel stuck. I did what I thought was right to make sure she had the care she needs I gave up a business before I was ready to care for her then a year later she had a stroke and moved to MC, then about 2 1/2 weeks ago she broke her arm. Even though she is not here at home I am still tired. I still have resentment because of the past and still not really able to move forward. I go see her every day because now she won't eat unless I help her (she tells the staff that she is not hungry when they try to help her). Sometimes I wish that she would have another stroke and end this. Then I feel guilty for thinking that. Your feelings are very understandable.
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There are no positives about this disease. Through the course of caring for DW for the past several years, I have developed a set of skills that have been useful in other areas of my life. I hope to come out the other side of this intact, with a clarity of purpose for the remainder of my life. Something I might otherwise not possess had I not gone through this.
My mother and I used to share an expression used during the hard times and difficult circumstances: "Knocked down nine times, get up ten"
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I know those feelings, the constant negativity, the isolating, the shadowing and sundowning, and searching endlessly for workable solutions without really finding much. Someone suggested the book "Travelers to Unimaginable Lands" by Dasha Kiper which has some great insights into how my expectations that DW will respond as she has for our many years together, only results in frustration for both of us. Occasional signs that she is still the person she was, cause terminal hope and then more disappointment.
This is a ten year ordeal so far, for me.
I have turned to faith as the only real comfort, as someone else has suggested. That, and getting up each and every morning making a gratitude list of five items then starting the day with optimism. Every day is a new beginning and has new hope.5 -
CindyBum, I feel the same. I think all of us do, or have, or will. There is no way to do this 'right' if that means fixing what's wrong with our loved ones. My sweet DH swears at me and complains in a word salad. There's nothing I can do to fix that. It's not him. It's the disease. I still strongly want to keep him home, and yet I know a big part of that is proving that I will take care of him no matter what — that I love him enough to do it no matter the obstacle — and also that I can't stand losing his physical presence here in the house. So my guilt about wondering if I can really do this is combined with guilt that maybe I'm doing it for the wrong reasons and he would be better off at a facility with trained (and rested) caregivers.
There's no right answer, except that you do what you have to do. It may not make any difference to your loved ones, or to others who watch you struggle. It just is. And by doing that you are doing the best.
{{Hugs}} we are in this together.
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Oh, you all! I am utterly grateful for your support and understanding. Let's see — denial? Yep. I'm having a very difficult time getting up and over the need to make decisions without her. And, listening to her today try to describe to me in a sentence that made little sense, I realize that I am definitely taking her criticism too much to heart. She has no idea, quite literally, what she's talking about. The poor thing.
Pride? Oh yeah. I can often get caught in the land of "shoulds", like "I should be able to be perfect to take care of my wife. I'm just that good." lol. Nope, I'm just human.
I do want to keep her at home, but honestly think I'm also starting to really acknowledge that I'm likely going to have to place my DW at some point. I can feel that closing in on use and it is working a number on my head and my heart.
I love the gratitude list idea. I love the faith lean in. And I love the support you all give. And I've always gotten back up, but had never heard the phrase, "knocked down 9 times, get up 10." My new motto.
xoxo
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I am with you sister. My DH can be so ugly. The doctor prescribed Quetiapine and it helps, but I sure can tell when he has missed his dose.
It is like a betrayal. I struggle with all the important decisions and tasks being fully my responsibility. It was always shared before and I could count on him to do the things I felt less competent to handle. The loss of affection hurts so bad. I am lucky that it still sometimes surfaces.
I am so sorry you are struggling. I hope you get some Respite.
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I have a week of respite coming starting on June 3rd. I cannot wait!
Now go get yourself some! It will make such a difference if you can get it arranged. Our brains and hearts need a break now and again.
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It isn’t you or the person you care for it is the disease that has robbed you of a relationship, employment and a life. There is no upside what so ever. Survival is the most we can hope for. Find something that you can enjoy each day and don’t expect anything from DW and don’t beat yourself up. It is the disease not you or DW.
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Cindy, I don't know how you do it. My wife knew she needed help and thanked me nearly every night for taking care of her. That affirmation made carrying on so much easier. Enjoy your respite, you richly deserve it.
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I understand fully. I have been helping a very close friend/ travel partner for over 2 1/2 years since I noticed his memory failing. I encouraged him to see a gerontologist since his PCP was no help, got MRI showed early Alzheimer’s. Went off island to Oahu to the big neurocenter, did everything we could do including every 5 week trips for a clinical trial. No help. Last 8 months he go worse. My living situation in Kauai got super tight with 8increase of HOA to $200 per month so I decided that for my daughter and grandson we had to move to mainland. I told my friend that was what he needed to make plans about. He got scammed, lost $5000 and that’s when I realized he had only $500 nest egg that was not goi g to last with his spending habits. I became so stressed, calling everyone I could to help my dear friend, his 2 children are non responsive and his sister just did not respond to my pleads for help except encouragement in ways that did not help. I finally reached out to the children he raised with his ex wife and they contacted her. She offered to help while I had to be in the mainland.
No she accused me of all sorts of BS, that I was even a threat to her personnel safety. This is so bizarre. I am a gentle person.
anyway long story short she arranged for him to get a new phone while I was gone, changed his number and took him to CA. I have no way to reach him now. He is going to ? Stay with his sister.He was so close to me for over 7 years, first person I spoke to every morning and the last at night. We did most of our days together. They baited him with the trip saying I was to be there to meet him there. Lies and more lies.
I am deeply saddened for first the gradual loss of my best friends memory and now to be completely cut off.
I don’t know how to cope.Suggestions.?
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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