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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.

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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.
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NeedHelpWithMom Nov 2020
Wonderful response!
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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.
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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.
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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.
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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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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.
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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.
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Shell38314 Nov 2020
Sorry for your loss too.
Hugs💗
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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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I’m sorry for the loss of your beloved husband. It may not seem related, but often when I’m looking to buy something I read reviews for whatever item it is. I always see that people are much more prone to write a negative review than a positive one, it’s human nature to report on something negative than something positive. You’re looking back now on a stressful time, hard beyond any measure, and falling into the human nature of seeing the negative things that happened instead of focusing on the good times and the wonderful marriage you had before all this. I hope you’ll be more gentle with yourself, look at the happy memories, offer yourself forgiveness, and have peace knowing you did the best you could in such a trying time
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I am very sorry for your loss. Please give yourself some grace because the truth of the matter is that you loved him, but you are human and caregiving is very hard and it takes everything out of you. I believe that he knows that you love him and you were burned out; in other words, you were emotionally, physically, and mentally exhausted. We go into caregiving with the best intentions not realizing that we are so exhausted and frustrated that we can't see straight. Just cut yourself some slack. You are grieving and part of that is the 'should've, would've, could've', in truth, you did the best job you could and that is all you (we as caregivers) can do.

May you find peace.

Sending you lots of hugs!💗
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I'm sorry for your loss.

Which actually happened slowly, along the years. You've been pre-grieving for so long, it became your 'norm'. Now your 'new norm' is dealing with the EOL things and moving forward.

There's NO ONE in the world who wouldn't have felt exhausted and frustrated in your place. Be gentle with yourself, OK?

My DH is not in good health and is getting ready to retire--when asked what he wants to do, all he ever says is 'sleep'....and I have no reason to believe he isn't going to do just that. He's been in bed all week. And he will probably not get up tomorrow nor Sunday, either.

Believe me, I am pre-grieving all the things I thought we'd do together---and hanging on tightly to the memories of when he DIDN'T want to sleep 24/7.

I'm sure your DH was profoundly grateful to you--just couldn't voice it. Time will heal this. Prayers for you today.
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I'm always so grateful to read the wise and comforting and helpful words on this forum.
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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.
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Shane1124 Nov 2020
Perfectly stated. We’re only human. You did the best you could.
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Sorry for your loss 🙏🏼

Welcome to the club...with getting annoyed at a lo ....

as a matter of fact, yesterday I got so annoyed at my mother scratching her crotch...& me keep sanitizing her hand & fingers...& this was a repetitive behavior...so I took break 5 min ...went back...to clean her, change diaper & put crotch itch cream.. then she stopped with that & fell asleep 😴.......hugs 🤗
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I'd get annoyed at my mom too, when she was rude to me, when she had Alzheimer's, but I had to remind myself that it was the disease talking. I also had to remind myself that if my mom's brain allowed, she wouldn't be acting in an inappropriate way. It's only human to get aggravated over these situations. I even wrote a book about our travails taking care of her, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I would just remind myself of the nice time that my mom and I had, before Alzheimer's basically hijacked her brain. Hang in there, and know that you did a really good job within a really bad situation.
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Jamison Nov 2020
Hi - I actually bought your book this year as my husbands caregiving is now 24/7 with dementia and Parkinsons. Some days are just really hard. We have only been married 15 years and the last 7 of those he has had dementia. I think it's human to feel loss and despair some days - it is a pretty bleak outcome after all - and I feel lucky to be able to take care of my husband in our home with our pets. Not real happy about spending my 60s inside the house watching him full time - we just moved 250 miles away from everyone we know and know no one here yet #pandemic. Just a matter of time. Sometimes I yell at him but I always go back in and apologize. I think he has a sense of what I'm going through. Good to keep a sense of humor intact if you can! I practice on the dogs!
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Juse understand that you're human and did the best you could.

And believe me, he was a thousand times better off. Felt more love, was not scared nor did he feel lonely or depressed and wax very fortunate to have been able to live tge rest of his life in his own home verses being miserable in a home.

Praters for comfort.
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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.
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Sorry for your loss, but you need to cut yourself some slack. As others have said, we are only human and we have our shortcomings. The fact that you cared for him as you did, for 3 long years says you are a good person!

As my kids learned at a very young age, there is only one thing in the world that is perfect - aholes... YOU are not one of them!!!

As others said, focus on all the good times you had and the wonderful care you were able to provide. Let those moments of frustration go. Would've Could've Should've never serves any purpose other than to bring one down. Those moments of frustration are just that, moments. I'm sure we've all had those moments over the many years when our LOs were healthy and fine - do you agonize over those? These are no different, other than having to deal with all that you did tends to bring them out sometimes. Forgive yourself!
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I am so sorry you lost your husband and under those circumstances. Hopefully time will help you. None of us are perfect and I am sure you did your best - you were in a terrible situation so don't be too hard on yourself. Just try and concentrate on the good times - and remember you were there for him and didn't give up on him. Lots of love to you and hugs. Give yourself time..........
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First my condolences on the death of your husband. This must be hard.

Really as a caregiver in the thick of tasks and seeing that his needs were met, you really didn’t have time to be a wife who can get used to the fact of your dying husband. We all have the voice of a critical parent inside us. So instead of being kind to yourself as you would be to a friend, you are being critical you are now holding yourself to the standards of a saint. Realistically this is not helpful to you nor being kind to yourself. Now is the time to be that friend and forgive yourself that your are human, acted normally and are not a saint.

If it continues, please get counseling for your grief and how you are feeling this unforgiveness towards yourself. Either go through clergy, hospice (if he had this), or a therapist.
Take Care.
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I am so sorry. I have experienced many of the same feelings for my LO. One of the things that I do is a meditation called forgiving yourself. It is on the calm.com app, you can get a free seven day trial. During the meditation the speaker asks you to forgive yourself and reminds you that you did the best that you could. She also reminds you that if a friend were telling you of the pain that they experienced that you would urge them to not be so hard on themselves. So try not to be so hard on yourself. It is a process and I think it takes a long time. But it is important to work on it every day. Over time this has helped settle my feelings of guilt, grief, pain and loss. I urge you to check it out. God bless.
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Time.

You did way more than would be expected of anyone.

If you feel you need therapy seek it out, and do not feel ashamed at having to do so. Could also talk to your local minister/rabbi/priest/imam if you're religious.
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Passion is passion. You were giving him all you had to give. The hardest thing I have found is this introduction to taking care of oneself for the first time in forever. Rest now and heal your body. What would you do to help a good friend in your situation? Caregivers have to think this way. Our bodies and minds don't know us anymore. You've done God's work. You won every day, and he knew you had him covered.
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You have plenty of company. I lost my bed bound husband about 3 weeks ago. There were times, not too many, when I would have what I called a melt down. Looking back, those times seemed to occur when there’d be a significant change in my husband’s condition. The most vivid was when he became totally incontinent. It was traumatic for both of us. Lots of tears and drama. I think my brain rewired itself to the new normal. I was losing the love of my life slowly and steadily with occasional memorable times as mentioned. I never dreamed I’d ever be called upon to do all the things I did. I felt clearly that the end of my husband’s life had many lessons for both of us to learn.
I’ve mostly felt numb and even paralyzed. I’ve too felt bad for the times I wasn’t perfect. These last 3 years seem to fade away as I recall our happier days. I’ve grieved continuously since he began to change and decline. It really has been a “long good-bye.”
You have a whole sisterhood grieving along with you. Prayers
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Tashi5 Dec 2020
I am so sorry.
So sad for all your pain and I pray that
you will be released from it and feel the comfort
of happiness in your precious life again.
Love from Tashi
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You did a fantastic job that very few achieve. No one is perfect! NO ONE!
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I lost my husband with Alzheimers in August. He was only in your husbands state of being bed bound and on hospice for a few weeks. But before that he was always wetting himself and refused to wear depends so I understand what you mean. So.ehow you have to let go of all that. He has forgiven you you have to forgive yourself and consciously only remember good times. It will come. I'm a tualky grieving loss of my darling husband more right now because I'm missing the friend ,companion and lover I had before. There are many steps to grief pull out pictures of good times. I put pictures of cruises we went on and other happy times all around the house. That helps me. I pass one and remember the fun. Hope this helps you a little
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It's hard for us to truly forgive ourselves -
its all so mixed up with our feelings of pain, loss,
and exhaustion- both physical and emotional.
May you more and more often be released from
the painful memories and be happy again.

My heart goes out to you.
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Ms. Hoover 🙏🏿
I been through annoying days as they forget where the bathroom was before we knew what was going on with their minds. days when I didn’t realize what to face it was figure matter. refused to put on clothes to eat , Didn’t want to take a shower just didn’t want to do what we want them to do. And I found out was because I do believe they understood us and they understood their independence and now they were taking orders from us constantly and didn’t appreciate it . Their independence was being taken away and this was the only way to show. I agree we are you human beings and we do get angry and we do cry and we laughed and we fill of mixed emotions.
It was the transition that they were going through regardless memory loss Alzheimer /dementia /Parkinson’s/ vascular dementia everything under that umbrella.
We accepted the early onset , but as they start transitioning personally ourselves could not cope with the changes. We tell everybody were dealing with it but we actually was not we were excepting The moment and we wanted to stop. We realize that we started grieving the death at least I did mother had vascular dementia but she did not leave to Glory base on vascular dementia on August 20, 2020 she passed away of arrhythmia weighing 94 pounds at the age of 86 and I placed her in the SNF two years ago I had retired in 2014 inherit mother January 1, 2015 caregiving for her for four years before then . . So as to look back as annoyed I just please with the family member we were caring for that I was at my breaking point. Was not accepting to be treated by our love ones we taking care for you are treated because we were not used to that anger on both of our sides denying in our love ones keep telling me I am not a baby .
And as I write this form flashbacks of my time with my mother I wouldn’t say it was disrespectful because I know I would never done any screaming and yelling or raising my voice and higher levels at her I need to find out that annoy them even more so I had to learn to take three deep breath‘s and calm voice readjust myself to the situation and handle it in a come a position .
So Miss Hoover those days will come of happiness and you will smile and then they’ll be days that you regret that you have lost your temper and yelled ,you hollered , you walked away and you will cry so go head and cry let it out it happens to all of us but it’s a good thing. So since I lost my mother in August 20, 2020 my days of loneliness has arrive and yes I cry every day for a little while, cries more cries remembering things I do we used to do together makes it even more to cry but. I do see a Breavement Councelor and I still see her to this day she said you have 13 months to see the Breavement Councelor 8-20,2020 and then they will have a memorial afterwards and if required longer they are there for me / this Services was offered by Sivitz Hospice so if you feel that Breavement counselor would help call your funeral home if that’s what you had called the social worker at your doctors office to set you up with free Breavement Councelor Your Internet they have sessions free sessions they might even have one in your area just put it in Breavement Counselor then put your state or your city , or check with AARP I wish you well the holidays will be rough as the first one has been for me as long as you keep the memory alive eventually our hearts will calm .& our Soul
And yet when you feel comfortable you should share your experience with another because you never know what they’re going through it might be the same and they too need to let them self converse about it first & you two can assist each other .
PS: Its only know I fully realize the state of condition Mother was in. Her world was changing, I wasn’t accepting because, I just retired with my plans & didn’t asked to care for her . My life was on hold .Denying the reality in the face,
God bless you and have safe holidays
Miss Bradshaw
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Both you and hubz are the victims of a sad situation. Few couples now are totally without relatives somewhere, and yours, wherever they may live, should have pitched in with cash or on-site help. Leave that part in God's hands. You did what God required of you, and you are free to re-think how you handled all the details while basically getting an unpleasant job done. Try this: Make a list of things you believe you did well with and for hubz. Take joy in it and share it with God in prayer. The items where you feel you came up short are common to all of us, all the time. Then, each day, watch for something that reminds you of thing[s] that you and hubz did together. Don't intellectualize, just enjoy. Do not indulge now in criticizing the relatives for what they did not do. Pray for their salvation. You are a good person. Take on a FEW new things to fill the void, IF THOSE THINGS ARE COMFORTABLE. [I'm a retirement home nerd because I don't like to play bridge. !!] God bless.

Russell W. Ramsey, 85 y/o widower who team nursed [with wife] our parents.
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I am so sorry for your loss. Please give yourself grace. You spent many years doing an extremely difficult task, watching your husband decline. Caregiving is a 36 hour a day job, meaning there are never enough hours in one day to complete tasks. It is so overwhelming and taxing. On top of this, you are grieving.
Now, forgive yourself and grieve. Cry, cry, cry. Take deep breaths, get support. Make sure you do some self care now.
Most of all know you are worthy and fine.
Every caregiver gets angry. All of us are human. God loves you, your husbandoved you.
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I think we all have periods of time when our behavior towards our loved one wasn’t perfect. I had a friend tell me remember this, “ at the time you were doing the best you could and yes anger and frustration took over for a bit. If it didn’t you wouldn’t be human. You love this person and yet here you are doing things for them that you never dreamed you would do. Forgive yourself because he would have.”
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