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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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Mrs. Hoover, I'm sorry for your loss, and I understand what you are saying. I lost my mother about 9 months ago. She was in a nursing home, and each time I visited I would "resolve" to be as patient as I could--but there were days when her being extremely hard of hearing and her constant questions (often about things I didn't know or about why my sister did such-and-such (I don't know--ask HER when you see her!) that I'd finally raise my voice, and she would get upset, saying "some day YOU will be old" and "I'm here by myself all day...". I apologized, and she would forget soon afterward. By the time I left (usually after 1 1/2-2 hours, staying around to help her eat her dinner and provide additional snacks, etc.), I was sometimes stressed and exhausted. I simply chalked it all up to "I did the best I could" and admit I'm not perfect. My sister seemed to do better, but she didn't go quite as often and as usual when she did she talked so much that I doubt my mother got much of a chance to ask her many questions!
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Reply to jacobsonbob
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Dear bereaved, I have rejoined in order to write to you with sympathy.
My husband died last April after 46 years together. I am still grieving, grief is a long process as one does ones best to carry on.
We all second guess ourselves. I was caregiver alone for 4 years .
I loved my husband and did my best never the less I was angry a time or two . We are human and I strive not to focus on that but think of all the times you got it right and did your best. Then think of all the good memories before he was ill.
Even now I talk to my husband and tell him all the things that upset me during his condition and how bad I felt when I lost patience.
Give yourself time you loved him now you have to love yourself and weather the variety of feelings from guilt, sorrow, relief , and the loss of your partner and how the condition was cruel for both of you.
I keep busy , still sob at times then carry on as they wouldn’t want us to be unhappy forever.
My husband loved life so I carry on in his honor and life is sacred so we must honor our own.
Its hard but you will get through the grieving process.
I send you love, understanding, and strength.
Aloha
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Reply to deperateheart2
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I agree with wolf lover. You was angry and yelling at the disease and not your husband. Sometimes it is hard for people to sort out the two. The disease made him do those things. Never would he purposely do that to you. So no need to beat yourself up for being angry at the disease. Any of us who have had a family member, or someone close, with dementia has gone through frustration with what the disease makes them do.
Give yourself time to grieve and go to grief counseling or a grieving group. two weeks is not enough time. Some people need a year to grieve. It depends on the individual and circumstance.
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Reply to Pinkpanther
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A few years ago I was having a bad time so I bought a pretty notebook. Each night I wrote down 3 good things that had happened that day. Simple things like a kid giggling, fresh flowers, a chat with a friend. It wasn’t always easy to find 3 good things but I persisted. I started mentally bookmarking those things during the day until I began to focus on the good, happy things in my life instead of the negative ones.

Each time you have a memory of the bad times write it down on a piece of paper and throw it away or burn it. Then write down a good memory of your life together and put it in a special box. When you have those sad thoughts open the box and read the messages.

My condolences on your loss, your husband was fortunate to have had you in his life. It's only been a few weeks, allow yourself time to grieve and heal.
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Reply to Frances73
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You were acting like a human.

It is normal to lose it now and then, when you are responsible for someone else's health care.

It is much more difficult to change an adult diaper than a child's diaper. They are bigger and more ornery.

I am sorry for your loss.

It is typical that people always feel guilty about the hollering, but your husband was very very very lucky that you took care of him.

Sending hugs. You deserve hugs and a medal.
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Reply to Heather10
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Be easy on yourself. Sounds like you were a loving but exhausted caregiver. It's hard work! I've read a lot about folks who keep a journal of positive things that happen during the caregiving journey in order to destress. Maybe it would help now to do something similar. Write down all the things you did to care for your loved one each day...every gesture counts, brushing hair, giving a sip of water, preparing meals, etc. Possibly reading over this in times of guilt will help. So sorry for your loss. ((Hugs)) Prayers for peace and comfort.
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Reply to Countrygal55
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Oh dear Mrs Hoover, please don’t punish yourself with grief over the times you yelled at your husband. The things you became angry over would make any of us exhausted caregivers very upset, and exasperated at having more work to do! It sounds to me like you were a very loving and attentive wife, giving and doing the best you could for your bed bound husband. I’m so sorry for your loss, and try to let your grief be over losing him, and not for the times you became furious with him. But I know that’s easier said than done, as I get so angry at my own husband with dementia, and then feel sad and guilty because I know he isn’t at fault and didn’t ask for this horrible illness. But then, neither did I plan to be a caregiver instead of a wife for the last third of my life! So give yourself a break, and when you begin to feel grief over your hollering occasions, try to replace it with thoughts of all the ways you provided your husband with so much care♥️

Darlene
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Reply to DRoseSB
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I wish I could reach through the space of media, virtually wrap my arms around you, to hug you through the pain. You may be experiencing survivor guilt. To go from the level of responsibility you carried all that time, basically living to support a loved one, then it all stops like turning off a light. Its devastating to you because of the foundation of your love with him. Please don't look back at incidents of fatigue fueled frustration and let it dominate over years of your loving care. Commit to let the good memories and shared laughter be what you remember of him. You must go through the grief process, but don't allow yourself to drown in undeserved, destructive guilt.
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Reply to SouthernSun
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I can understand your feelings as you recall the things you may feel guilty about. I lost my husband in May 2020, who had lived with emphysema and some residual effects of a stroke. I took very good care of my husband too, in fact, his sons had commented that he wouldn't have been cared for so well by their own mother. All our friends and the social workers made comments from time to time on how I loved and cared for him and the last thing he said to me before he lapsed into a coma was that I took very good care of him. And yet, I couldn't take comfort in that in the weeks and early months since he died. I kept asking myself what I could have done better or worrying that the way I adjusted his oxygen levels might have caused his brain to shut down. I had storms of weeping and feeling incredibly guilty and lost whole days because I just couldn't function properly at all. I couldn't see any point on carrying on living without him. I had a very abusive first marriage and I felt my late husband was my knight in shining armour. I felt that the 30 years we spent together were the only happy years of my life.

Like you, I had occasionally lost my temper and I had demanded to know why he couldn't avoid making messes. I often felt guilty close to the time and never stayed angry for long. We were able to cuddle and I would apologise, but then the next time something went wrong I would blow up again. My husband had also lost his short-term memory and he would forgive me each time,

My feeling of loss was compounded by the fact that the Covid restrictions had started and I was fearful of being with people. My friends who are also in the vulnerable category like I am couldn't be with me and so I wasn't able to have the hugs and comfort I would have liked. I was lucky enough to have a social worker who called me at intervals and just talked with me. She told me that feeling guilty was a very normal reaction from a bereaved spouse who had cared for their loved one, not everyone, of course, but it was a frequent enough reaction. I didn't believe her at first but eventually it has relieved some of my guilty feelings.

I still have days when I cry all day and feel guilt again but they are getting less often. I still say good morning or good night to him and yesterday I also said that I would try to do better and not break down again. Somehow that worked and I had a good day. I didn't want him to go when he did but I know he had been very brave in his last months. I couldn't have expected him to go through the ordeal that was his life any longer. I just wish that I had been allowed to go to the hospital and hold his hand in his last hours.

I have been going through some of our old travel photos and remembering the happy times we had together helps.

I hope that you are able to come through this difficult time and that eventually the feelings of guilt will recede and be replaced by your happy memories.

Many hugs to you.
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Reply to Jellylava
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sunshinelife Dec 2, 2020
Many people go a lifetime and don't experience the love and happiness you shared with your husband. Lucky lady
Im sure the Angels are taking very good care of him now.
And he will be waiting for you when you pass over with open arms & a big smile.
Enjoy each day here, it passes so quickly
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One of the things I do for my loved ones who have gone on is to say a "prayer for the departed" which is supposed to help their souls grow closer to God.
One I use is this:

O my God! O Thou Forgiver of sins, Bestower of gifts, Dispeller of afflictions!
Verily, I beseech Thee to forgive the sins of such as have abandoned the physical garment and have ascended to the spiritual world. O my Lord, purify them their trespasses, dispel their sorrows and change their darkness into light. Cause them to enter the garden of happiness! Cleanse them with the most pure water! And grant them to behold Thy splendors on the loftiest mount."

I also thank God for having this person in my life and for the love and blessings I received from them. And, if I remember, I try to do something special for another person in the name of this loved one, honoring them by doing this.

Being able to take some positive actions for our loved ones helps me feel that love still and be thankful for it. Perhaps it would "atone" for your bouts of frustration and anger.

I hope this helps!
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Puma1953 Dec 2, 2020
JohnnyJ: Your words helped me because I miss my mother. It has been 3 years and I cry almost every day. I do a lot of things for my elderly neighbors and yes, I do it to honor my mother.
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I am so sorry for your loss. Many condolences.
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Reply to Llamalover47
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Seems you are on your way to finding comfort in good memories of him - even in the midst of a difficult situation. Think more about the good memories. Ask God to forgive you for the difficult moments and your frustration.

If you feel you need more help, join a grief group like GriefShare during this first year of life without him.
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Reply to Taarna
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I don't think you were hollering at "him" but more so the disease.  I guess we all feel guilty at time for lashing out after being frustrated and drained, but it has to come out sometime or we would all go crazy and also become physically sick ourselves (stress does terrible things on the body).  I know there was a couple time I yelled at my dad using a 4 letter word which I never used around them, but I had just had enough.  Just like today with my mother.  She doesn't have full blown dementia but I can tell in small things that she will be getting it or has a "small" amount in there somewhere.  after trying to determine IF she put the wrong meds in with another med and also with her diabetic stick pen.....she got mad and said she didn't give a "d" and I said I didn't give a "f"..........I felt bad later but I just get tired some days.  Just like you.........you did a wonderful job but after trying to get someone with a disease to understand and they don't.......you have a breaking point.  Don't beat yourself up over it........again you were hollering at the disease for being so unresponsive to your request.  I am sure your hubby (if he could tell you now), that he did NOT hold it against you and that he couldn't help it.  I wish you peace with knowing you did good.  Get a picture of him and talk to him, tell him you are sorry.......God bless and wishing you a peaceful recovery of his death.
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Reply to wolflover451
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I, like yourself expect the very best of myself at all times, and forgive others shortcomings relatively easily. Generally men are comfortable being 'angry' and women comfortable being 'sad'. It societal conditioning. We all have the full spectrum of emotions. And it is healthy to express them..especially with family
Considering the strain of constant demand and little appreciation (at the time) you have just been through, its amazing you weren't angry 'a Lot more often'.
Anger is how we push people back. A defense mechanism. Don't second guess yourself and punish yourself with guilt.
You were completely devoted.
And showed loyalty and care in a time when very few ever do. Read some of the conversations on other questions on the platform.
Most people advise institutionalizing the elderly when they lose control of their own health. And therefore life. Whether it be a spouse, a family member or a relative.
Rest secure in the knowledge that the Angels are taking care of him now.
And you need to take care of your health and be gentle with yourself
Dr Bach Rescue Remedy avail at any big pharmacy, market, or Amazon, used frequently, (rub onto perfume spots..behind ears & on inner wrists, and added to juice & water constantly) will help you keep your emotional balance. Its made from essence of flowers, no drugs, no side effects. And has been available for over 80 years now.
Its okay to feel relieved.
We are only human beings after all
Im sure he will be waiting by the door for you when you too cross over.

"Love is never seperated from itself for long"
Mother Theresa
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Reply to sunshinelife
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So sorry for your loss. It sounds like you were a very devoted caregiver, and like your husband's needs were pretty extensive. I hope you can forgive yourself for being human -- everyone has a breaking point -- and allow yourself to grieve your husband without beating yourself up. You did the best you could, loved him faithfully, and cared for him to the very end of his life. Hecwas a lucky man to be so loved.
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Reply to Farmerswife
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Sorry for your loss. This is a terrible time for you. Forgive yourself we’re going through the same thing with our father, it’s irritating, frustrating and sooo time consuming it’s not a good feeling. Just know that others have/are doing the same but it doesn’t mean we don’t still love them. Warm hugs
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Reply to malsings07
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My heart hurts for you. I lost my husband to Lewey Boby Dementia June 26. My heart is hurting so bad. We would have celebrated our 55 anniversary the day after Thanksgiving. I'm trying to take one day at a time. Sending hugs & prayers. I'm thinking about trying to find a suuport.
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NeedHelpWithMom Dec 1, 2020
So sorry for your loss. Many hugs.

Your husband lives in your heart. He will be with you in spirit for your anniversary.

It’s obvious how very much you loved him.
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Sometimes. When we care we tire our selves out with care giving. We are human and tend to fall apart. Sound like you needed help before his death. You may have put your mental and emotional health at Risk. Please forgive your self only you are hurting you with all these regrets. I needed help from my Dr.and friends. After 5 years in my 70’s I was worn My daughter helped me . He went into Rehab because of a small stroke. His family took control. God loves you and he does not hol those things over you. I am saying this out of my heart. You have been a wonderful caregiver
Jane Osborne


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Reply to sanejane
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Your grief and your guilt is testament to the strength of your love. Feel them but don't dwell on them for too long. All of your feelings were normal and valid. Focus on your shared love, which is alive and everlasting. Wouldn't your husband say he knows how much you love him? When you are feeling anxious about it, try this therapy technique that I learned: Close your eyes and imagine you and your husband together. Where are you? Use your 5 senses to recreate a moment. The more detailed the better. Say them out loud. What do you see? What do you hear? What do you feel? What do you smell? What do you taste? Really form the whole picture in your head and spend the time. Open your eyes and note how you feel. You can keep that beautiful image in your head whenever you need it throughout the day.
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Reply to Chrismci
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MrsHoover,

I'm so sorry for your loss. Grief is such a peculiar mix of feelings and all too often guilt sneaks in and complicates everything, especially our recovery.

Grief is the price of love. There is no timetable for it. Allow it; don't suppress it as it ebbs and flows.

So you lost patience at times. Forgive yourself those lapses. You are only human. But you were there for him, for better and for worse. How fortunate for you both you shared a love many only dream of!
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Reply to CantDance
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Being a care giver is the most stressful vocation you can do.
No matter how much you loved your husband, and it certainly sounds as if you both were blessed with a loving relationship, we all have our breaking points. I am sure you provided excellent care for him.
Think about the loving times you shared together.
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Reply to Christservant
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Griefshare.org
look for a group in your area.
and starting dates
you do not have to go to every single meeting
and you only speak if you want to
They sometimes offer a session called
surviving the holidays
and another for widows.
very helpful.
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Reply to THretired
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PS Your husband died only two weeks ago! This is still shock and PSTD time for you. Take care of yourself and give yourself plenty of time.
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Reply to RedVanAnnie
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Caring for my husband was not nearly as daunting a task as you and many others describe. I was fairly lucky in that regard. Still, I was sometimes exasperated or angry or furious at things he would say or do. When he would not "co-operate" such as leaving his feet on the bed long enough for me to run around to get his head also on the bed, I would holler at him, "I'm going to take you the The Home," all the while thinking, "You can't be mad at someone who is dying!" But, of course, you can. You are stressed and tired and depressed that your LO is dying. Your husband's difficult behavior put you right over the edge. So you hollered. That's how you felt. You and your feelings count too. Do not beat yourself up about that.
If there is any "there" there, your husband is only remembering that he loved you and that you took wonderful care of him and that, yes, he probably gave you a run for your money there for awhile. Any yelling you did in the process is long forgotten.
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Reply to RedVanAnnie
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My husband has FTD and I went through the exact same thing. He’s now in a close by residential facility and they take care of the things that used to cause my meltdowns. I have to hope that those episodes did not stick with him. I often apologized afterward. I know it’s irrational to become so angry with someone who can’t help it, and it helps after reading these answers to know that I’m not alone. Bless you and know that YOU are not alone. You were not angry with your husband as much as the horrible situation, and he probably knew that. I hope that all along they feel our unconditional love.
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Reply to Rafaela
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I hear ya sistah! My hubs of 51 years passed May 21. I had been taking care of him for 15 years. The last 3.5 years were the worst he was mostly in a wheelchair late in the day but on a walker the rest of the time. I eventually had to take the walker away at night because he would get up to go to the bathroom and had forgotten what he needed to do. I usually woke up at some point after he had left the bedroom. The messes he would make with poop trying to clean himself smh. When he no longer had the walker, he would wake me up and I would walk him to the bathroom and give him prompts about what to do when he “finished”. Eventually he went to adult diapers full time as his mind and body deteriorated.

Yes, I yelled and I fussed. He would just smile. He was a brilliant man before his stroke and I loved him very much and he was very fastidious about his personal hygiene and grooming. So I tried very hard to maintain that. But things can get frustrating to say the least when you’ve cleaned them up, got them dressed for a doc apt, then have to do it all over again because of an accident. Anyone would get aggravated. Don’t beat yourself I’ve thought about all those times and wish I still had him here to do things for again. That’s 6 months out perspective. It’s part of the grieving process. He passed holding my hand. I’m sure he knew I loved him and your hubs did too. Take a little time and pat yourself on a job well done even if there were a few bumps in the road.
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NeedHelpWithMom Dec 1, 2020
So sorry. Thanks so much for your transparency. It helps for others to see that people aren’t perfect!
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Wish I could reach out and hug you right now. Bless you. Caregiving isn't easy ~ especially 24\7. I know it's difficult to see this right now - but, the very moment you start remembering the awesome times you had together ~ the older memories, the good memories, the happy memories will be first & forefront. You may occasionally think back to an unpleasant memory, but the majority will be the fun times. Look through your pictures and remember ther good times. Remember the pictures just as they were when you were in them. Those memories will soon flood you with the the beautiful life you had together.
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Reply to JBryan
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My deepest condolences to you for the loss of your husband. We've all been right where you've been. Beloved, no matter how angry or upset you became at times, your love covered him more than the anger. God's grace towards you was sufficient even during the suicidal times, so that tells me of His love for you. Caregiving is the hardest work in the world because of the constant giving of yourself. Most don't realize that the caregiver needs care at times too. But you made it and God is very proud of you. Now it's your turn to be cared for. And take your time too!
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Reply to Bluesandwhite
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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!!!
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Reply to Skyblue
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I'm so sorry for your loss. It is hard to be a caregiver so don't pound yourself for your anger, it's natural. But, on the other hand, could you imagine seeing your husband like you describe, for a few more years, his own embarrasment at what he had to have you do for him. That wasn't in his mind when he married you, and so as he neared the end, he must have felt something that made him want to help or get on with by wiping his hands.
Don't beat yourself up. Would you have wanted him to go on like that for a few more years? I know I wouldn't want that. You did what most of us spouses do/did. We take care of our loved one, despite being grossed out.
I took care of my husband for 10 years or so first with dementia then Alzheimer's. He mostly was docile, slept most of all day on his recliner, but in the beginning we went for walks and places. Later, it was just in his chair; he probably slept 18 hours a day. Finally, came the day I had to do IT. Find a place for him, as he got to wandering (you've all read this before, crossed 6 lanes of boulevard on a Sunday afternoon when there was hardly any traffic!). That was hard to do. He didn't get incontinent until he was in the AL; he began falling, 3 times there when he didn't fall at home, Hospitalized for all 3. Came back to the AL and Hospice was making up his room for safety when he had 3-4 strokes between his being showered and brought to his bed. While I hated to see him pass, I was relieved for him, as he would have had a more tragic death since he was prone to wandering at this stage, and very well could have walked into the street if the doors weren't locked. And, by the way, he hadn't know who I was for at least 4 years before his passing. Before he was in AL, I found him one day putting the house key in the ignition of the car (his keys were in the safe and mine in my purse); I knew it was almost time. His wandering up the boulevard was the straw that broke the camel's back. When he passed, as I was talking with him in the bed, I shed a few tears, but to this day, I couldn't shed a tear, barely at his memorial at the VA cemetery. In my heart I was glad that he had no more suffering, I didn't have to worry about him breaking down the door at the AL, or figuring out the button to push to get the hallway doors opened , as he was prone to do., and he could keep his pride when he soiled. We know when our spouses we've been married to many years (mine 58), should go, we don't want to accept that, but for their sake, we must think what is best for HIM/HER, not for us. Be brave, chin up, look around the house of memories, put all your pictures of you together on the wall, talk to them if you must, and remember only all the good things of your lives together. They are in a better place. Shed the rock on your shoulder of your words that may have hurt him. Maybe he didn't even know what you were saying or understand. Be kind to yourself. Hospice provided me with a counselor, and I didn't think I needed it. But, it helped me so much. I suggest the same for you. It will definitely help.
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