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MrsHoover Asked November 2020

I lost my bedbound husband two weeks ago after 3 years of being sole caregiver. How do I get over the grief at the many times I was annoyed?

Hubz was mostly bedbound, in diapers, had a feeding tube and catheter and had occasional vascular dementia. I took exceptional care of him but I also got exceptionally angry at him for forgetting stuff like keeping his hands out of his dirty diaper area while I changed him or wiping feces on the wall. Anything that gave me extra work. I lashed out verbally, not too often or I would be suicidal now but instead of being proud of how good a job I did, all I can remember is hollering at him. He was a sweet, wonderful man who deserved better and I am lucky that the short-term memory allowed him to forget my anger, which came mostly I think from exhaustion. We loved each other very much and truly I was not ready for him to pass.

lealonnie1 Nov 2020
I'm so sorry for the loss of your dear husband; my deepest condolences.

You were given a very, very difficult job to care for a bedbound man with as many issues as your husband had. And you did it to the very best of your ability. Since you're human, you had your moments of frustration and annoyance, as ANY human being would have. You had an exhausting and often thankless job, yet for some reason, you expect that you should have done it 'to perfection' with absolutely no breakdowns or issues of any kind. Imagine if someone else was telling you THEIR story, and said they had some moments of anger toward their husband in the same situation? How would you counsel her? Would you tell her that she was a terrible person for being human, or would you tell her that WOW, you did an EXCEPTIONAL job and stop putting yourself under a microscope & examining your every word & movement!?

Nobody is every 'ready' for a loved one to pass. But your husband was ready to transition into the next phase of his eternal life. One with no pain, no suffering, no dirty diapers, no dementia.............just happiness and joy.

My mother is 94 next month and living with dementia in a Memory Care AL. I pray every day for God to come take her b/c she's miserable. To live in constant misery and pain is no life, let's face it. I know that she will be finally joyous and pain FREE once she transitions, so why not NOW?

The other thing that lots of people forget is that care giving is a two way street. It's not 100% about the sick person. It's also about the care giver. There are TWO people who's lives have been thrown upside down, yet all we tend to focus on is the 'sick' person. What about YOU? Who was there to comfort YOU? Who was there to help YOU? Who's shoulder did YOU cry on?

You've already been through enough pain and suffering, my friend. Now is the time to allow yourself to HEAL. You will always grieve the loss of your husband for the rest of your life, but that is something different. Allowing yourself to heal means that you choose to focus on all the beautiful memories you made together, before he got sick & before you became his full time care giver. Don't remember him sick; remember him healthy & vibrant & laughing. Remember the happy times and you will KNOW you're beginning to heal when you can do that.

How do you eat an elephant? One bite at a time, otherwise you choke. Take small bites every day and allow the sunshine and laughter back into your heart, because that's what your husband wants you to do now. Live the rest of your life happy and free from anger & self hatred. You deserve to.
NeedHelpWithMom Nov 2020
Wonderful response!
cwillie Nov 2020
One of the reasons I finally placed my mom into a nursing home was that I found that my fuse was getting shorter and shorter, I would roll out of bed each morning with my head filled with good intentions and I seldom made it to noon before an ugly incident. Mom was in the nursing home for 18 months and she's been gone now for 2 years beyond that, although I still sometimes remember and feel remorse time really does make things easier.
lealonnie1 Nov 2020
This is such a truthful statement; in an effort not to 'put' my grandmother in the 'dreaded' nursing home, my mother let her live with us. They fought like cats & dogs, day & night, ruining my childhood entirely. Not to mention their own LIVES as well. Ironically, after 25 years of living with my folks, grandma went to live in another state with another daughter who 'put' her in a SNF after a couple of months. Grandma was a handful, as is my mother *her daughter*.

You were wise enough to recognize your short fuse & that your mom AND you would be better off with her in a SNF. No shame in that; just good old common sense & smarts. Sometimes, we're forced to choose the lesser of 2 evils in life and that's one of the ugly facts of old age & elder care in general.

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funkygrandma59 Nov 2020
I lost my bedridden husband a little over 2 months ago now, so I can certainly relate to what you are feeling. My husband had vascular dementia, and many other issues, and I cared for him for many years, including the last 22 months of his life, where he remained bedridden. It wasn't easy. Caregiving isn't. Did I lose my temper with him at times? Of course I did. Did I always feel bad afterwards? Of course I did. I would always apologize afterwards, and I was always grateful when at times he would say that he didn't remember me hollering at him. But like you, I remembered.

My husband too remained for the most part very sweet, and kind right up to the end, and we loved each other very much, but caregiving takes it's toll on the best of us. You have to allow yourself some grace(as do I), and know that you did the very best you could. My husband had wanted to die at home, and even though it was hard, I was bound and determined to let him do just that.

So while it is important for you to grieve, please don't waste your time grieving what you shouldn't of said or done. The past is the past. Leave it there, and allow yourself to instead, grieve the man you loved and lost, and know that you did the very best you could.

My heart goes out to you. I truly feel your pain. I believe there has only been 2 days since my husband died on Sept 14th, that I haven't cried at some point in the day. And I'm ok with that. I will continue to grieve as long as necessary, and I will try along the way to be kind to myself as well. That is my wish for you as well, that you stop beating yourself up over the past and just be kind to yourself, as you grieve the man you loved. May God comfort you and give you His peace, in the days, weeks, and months ahead.
Shell38314 Nov 2020
Sorry for your loss too.
Hugs💗
Skyblue Dec 2020
I lost my husband after 3 years of brain cancer. I remember telling him to be quiet in the hospital as he lay dying. He moaned so loudly. When I look back over our life together I see many occasions we lashed out at one another. I wish I had been more loving. When you are giving care and feeling suicidal you can not cope completely with your own emotions. Stress has to be expressed or you will become incapacitated. Both of you knew this. He knew this. The fact that you cared for him instead of leaving him demonstrates your undying love for him. No one is a perfect caregiver. We fail and keep trying over and over. Besides your love is not based on whether you lose your cool or not. Your love is based on how you cherish each other even when you are driving each other crazy. Your husband is now in a place of unconditional love. You can count on him offering that unconditional love to you. The transcendent realm or after life is all about love. Not being perfect. You were awesome with your husband. You still are. You and he can connect on a different plane within your heart. Remember the three years that you cared for him were a sacrifice for both of you. It was not normal. It was not how you wanted it. Life never is. But love endures. Love endures. You are beautiful. You are an inspiration. I can’t think how anyone could do what you did without cracking under the strain. You are human. You are a human who loved your husband. Love never dies. Please enjoy life however you can even if it’s just for a few minutes here and there. You don’t have to feel happy all the time if ever!!!

AlvaDeer Nov 2020
I am so sorry for your loss. You are the first person I have seen correctly label this as grief. Most say "guilt" as though they were felons who did evil with malice aforethought. You already recognize that this is grieving. You understand what your poor husband went through. How could you not wish that you were a Saint rather than a human with frustration, exhaustion, human limitations. You already know you are grieving. I wish I could say this will go away forever someday, but there is SOMETHING in us that uses these single moments when we failed the test of perfection. Is it because we, from infancy, are exhorted to "be good"?
Or are we desperate to assign fault, as though were we to identify it we could cure everything?. Of all the many ways that it all went well for my parents at the end of their lives, I still cling on to two moments, one when my Mom was angry that my bro and I had to leave, and one when she said "Is there no way I could stay at home until I die", knowing all the while that there was no way. I remember these moments amidst all the LIFETIME of wonderful things; I still wish there had been SOME WAY I could have stopped those moments of grief or anger, could have escaped what I felt inside myself.
I hope there will come a day you will be all right with his leaving. That you will feel a kind of relief for you both. That he has no longer to be in that torment, that you no longer have to witness it. That there is peace for you. I believe with time--and what else can heal grief?--you will be all right. I know within yourself you already recognize what a marvelous thing you did for the man you so loved/so love. Know it at least rationally.

Sweetstuff Nov 2020
MrsHoover, I agree that we loose our patience because we are exhausted. However, I honestly believe if you took those instances lacking total patience and measured them against all the other times over many many many years of patient caregiving, they would not register on the scale. Please try not to focus on those immeasurable moments. I appreciate you sharing honestly as I also feel the guilt of not being perfect with my Mom. Our LO’s knew well before their illness that we were not perfect and we need to accept that reality. I am very sorry for your loss and hope that you can let go of those moments and keep hold of the many loving memories and be very proud of the how well you took care of your husband. Sending you a hug.
Shane1124 Nov 2020
Perfectly stated. We’re only human. You did the best you could.
jacobsonbob Nov 2020
MrsHoover, the fact that you feel guilty about this proves that you are a kind and caring person, and because of the latter, you had done the best you could have done.

My mother was very hard of hearing and ended up with very poor short-term memory, so she would ask the same question several times in short order. (She had always been an "interrogator"!) Sometimes I would lose my cool and snap at her, but with her memory she would usually forget. Sometimes I apologized, and she just said "it's okay" and let it go. I usually spent a couple hours with her 3 or 4 times a week (she ended up bedridden in a nursing home) so I did the best I could.

Could I have done any better?--YES

However, did I do the best I could taking into account my own personal flaws, shortcomings and basic human fallibility?--YES

Therefore, I just accept that I did the best I was capable of doing, and she was taken care of, I can't change anything now, and she knew I loved her and she loved me, and I let it go at that because the bottom line is that our time together worked out successfully.

NeedHelpWithMom Nov 2020
I am so very sorry for the loss of your husband.

It is truly refreshing to see someone post with such transparency.

Everyone becomes frustrated during the most challenging times of caregiving. Please don’t feel badly or have regrets.

Even Mother Teresa who is now ‘Blessed Mother Teresa,’ now an ordained Saint became depressed and needed time away from her dedication to caring for others.

Mother Teresa would often spend four hours in the morning, in solitude, praying in her chapel before she attended to the dying. She did that to gain the strength and insight that she needed to care for the poorest of the poor, the sick and dying.

I would struggle when caring for my mom. I heard a beautiful homily in Mass where my priest said that we are not all called to be like Mother Teresa.

Often I expected too much from myself and felt like I had failed my mom, even though I knew that I loved her and took very good care of her.

It took others and my therapist to point out to me that I hadn’t failed.

I was human and did my very best. We all lose patience from time to time.

Be at peace, knowing that you did your very best. Your husband knew that you did your best and felt your love. He loved you.

He will live in your heart forever. Find comfort in knowing that he is no longer suffering.

Take care, dear lady. I wish you well.

There is no right or wrong way to cope with these matters.

Many of us cannot do what you were able to do. You cared for him until his last breath.

You will reflect on his life. Grieve, which truly starts before the actual death occurs.

We grieve for the person that we once had, knowing they will never be healthy and well again.

Please know that it is okay to move forward in your life when you are ready to.

sjplegacy Nov 2020
Many in this forum have lost a parent, the one who gave them life, the one who nutured them, the one who loved them unconditionally. But to loose your spouse is to loose your future, your better half, your intimacy, your dependence on one another. It is the one person you vowed to go thru life with thru thick and thin. No one has the patience of Job and I don't know if he could have kept his cool under these circumstances. We all get annoyed, frustrated, angry and sometimes resentful.

We experience grief because we lost a loved one. The longer and more loving the relationship, the deeper the grief. Your grief and your pain validate the significance of your relationship. My wife had Alzheimer's. She would mistake the closet for the bathroom. After one such episode I told her I was going to explode! To this day ( 3 yrs after her death) I regret those words. But I move on. So must you. You have to choose to resolve your grief. Not in a day, a month or a year. You'll resolve it in your own time. Seek out grief suport groups, talk to your pastor, seek professional counseling if you must. You did what you had to do. Now begin to do the things that bring you joy. I hope the memories of your days together bring a smile to your face. God bless you.

You might like “Getting to the Other Side of Grief, Overcoming the Loss of a Spouse”. Get the book at your library or from Amazon.

cdnreader Nov 2020
Dear MrsHoover,

My deepest sympathies and condolences. I'm so sorry for your loss.

Being a caregiver is the toughest job in the world. You did your best under very difficult circumstances. Lea said it so well and I find so many caregivers don't have enough support and try to shoulder everything on their own. We keep going every day even when we feel like we can't.

Please be kind and gentle with yourself during this sad time. It's only natural to look back and think we should have done things differently. I know I still do this with my dad and it's been 4 years.

((((hugs)))) Please know we are with you.

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