My husband, 91 with ALZ, was finally admitted to the Veterans War home. They are practicing CDC guidelines very well. On October 12 our son and grandson made the four hour drive with Bill and myself. He was alert and awake the entire day. It was so cool to see him interacting with the three year old grandson. He did not know where we were going or why. After the three hour admitting process was complete we said goodbye and that was it. Bill didn’t understand what was happening, so eventually I told him I was going to get some ice cream and would see him soon. That satisfied him. He was in quarantine for two weeks. His move from the quarantine building to his forever building was very confusing for him. A nurse called me so I could reassure him. He was convinced that he would be on the streets by nightfall if I didn’t come right away. This was the first time I spoke to him. After I did my best to comfort him I called his hospice nurse and asked if she would go see him. Her report stated that he was adjusting well and even making new friends. My son and I are scheduled for an outdoor visit, separated by plexiglass and wearing mask, on Monday. We are not aloud to touch or give him anything. We wanted to bring ice cream of course, but we were told no.
I don’t think anyone that hasn’t lived as a caregiver can even imagine the relief of not constantly looking at a camera on your phone or being able to just go to the store or anywhere without planning in advance. I did the best I could for the past eleven and a half years and my hope is that he can be happy and well cared for in the end stages of his life. I feel very guilty that he is alone, but comforted that his nurses are qualified and caring. Our son is worried that his son will not have memories of his grandfather. If COVID restrictions go into next year children will still not be permitted at the nursing home. This may be his last Christmas and we have always had everyone over to celebrate; this year is going to be sad, but hopefully I will be able to take him some familiar things.
When will the relief and guilt mesh together? When will it just be “normal” to go about my day without thinking, “it’s so strange to....”
Can anyone relate? I feel like I’m being selfish, but I also feel like I deserve this freedom.

I am going through similar situation. I am now guardian of my 78 yr old dad. He has dementia, but about mid stage. His body is failing faster than his mind he’s in kidney failure, brittle diabetic, has a huge mass in lung. He was in nursing home 1 year placed by my stepmom. I took him out 2 weeks ago and brought him home. He was so happy. But I didn’t know how hard it would be. I didn’t sleep for two weeks. Just an hour of 30 min here and there. I had to sleep in the room with him. He has severe COPD too. I couldn’t afford to hire a caregiver I tried and I couldn’t afford it. I offered live in accommodations plus salary and no responses. I had to return him to nursing home. I found a small one and I tricked him by saying he was going into the hospital. He does have several specialist scheduled to see him. I placed him yesterday. He flipped out. They had to put him alone and away from isolation room and try to sedate him. He called 18 times. I couldn’t answer. I listened to his vm and had to stop I cried all way home and I can’t stop. I just wasn’t able to do it unless I hired someone AND quit my job. But now the pain won’t stop. I feel tremendous guilt. So I can’t tell you how yours will either. Everyone says you did the right thing. I’m sure you hear that too. But to me the right thing is if we could keep them comfortable at home until death without paying more money than we can afford. I wished with all my heart I could’ve done that and I hate that my dad is going to die in a nursing home. It sounds like you did it for a very long time so it will take time. I only did it for 2 weeks and physically wasn’t able to stay up without sleep any longer. We both are grieving. Hopefully people can give us support here.
Helpful Answer (11)
Reply to Melissa621
Sweetstuff Nov 1, 2020
I’m very sorry Melissa. Is your Dad doing any better today do you know?
I don't think "Christmas" and "Thanksgiving" are important as far as making memories go. What's important is the time you've already spent together..........the memories you've already made. The time your DH has spent with his grandson. THOSE are the times you will cherish in your heart forever. Not what 'isn't' coming next because of an unfortunate & untimely pandemic, although I don't know when would be a 'good' or 'timely' time for a pandemic TO happen.

Your DH is stricken down with a terrible affliction of the brain which has destroyed your life and his life, for the most part, let's face it. Watching a loved one wither away from the ravages of dementia/ALZ is devastating. For BOTH the caregiver/loved one and the one afflicted. It robs him of who he once was and it robs you of being all you can be because you're worried and frightened and on guard 24/7.

You did the right thing by placing him. Was it easy? Of course not. Will he adjust? Yes, totally. With YOU, he will be miserable and complaining b/c you are his sounding board. With his carers and other residents, he's likely to be fine, making friends and adjusting daily.

Now is the time for you to create your new normal. Your new schedule, your new way of doing things without looking over your shoulder or getting a knot in your stomach worrying. Allow yourself the time to mourn the loss, and this IS a loss worthy of mourning. To not grieve this situation would not be normal. But don't focus on it from a 'guilt' perspective as if you've done something 'wrong'. You haven't. You've done what's right for HIM, mainly, and then for you, secondly.

Be gentle with yourself as you adjust to the changes in your life, dear one. All the best.
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Reply to lealonnie1
dogparkmomma Nov 3, 2020
Well said. I was thinking about how we put some much emphasis on the importance of holidays and often people are disappointed when it does not turn out to be a Norman Rockwell day. For the person with dementia, the holiday is often just another day. We always had our inlaws over for all the holidays since we were the only children that lived locally. As their dementia deepened, we visited them instead, first in the independent living and then in memory care. What I thought was a blessing is that due to dementia, they lost the significance of the holidays and did not really seem that aware of what they had lost. I think that is a good thing. It was still sad to see but they really did not compare it to prior years.
So many of us have been or are in the same position. I am about to move my mom into Assisted Care. If it wasn't for Covid-19 restrictions it would still be difficult, but it has made the choice more difficult. But it comes down to only bad choices whether she stays home or not. Her well-being and my well-being, need a change.

Guilt is a part of care taking, whether it is at home or at a facility. I have come to realize that. I feel guilty with her at home all the time. I find it harder and harder to be the full time care taker. I know my mother can't help being who she is - it is not her but the disease, but after taking care of her for years, I am worn out and not the person that I want to be. I can't always be kind, I can't always let her life dictate mine.

Please forgive yourself. You have done what you can do, and the choice is the best choice that you could make.
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Reply to karenonthames

I am glad you feel the relief. You SHOULD feel relief. We should even be allowed to feel relief when our loved one dies before descending still further down this awful slide of loss after loss.
I am glad you recognize you have a right to freedom and a life.
What you describe as "guilt" I call another G word, which is grief. You are grieving. You are not a felon who has done evil with malice aforethought and delight in the pain you cause. You are a human being who cannot fix everything, cannot make everything perfect. You aren't a Saint. I like to say sainthood is a pretty bad job description overall because we load them up full of shot arrows, kill them, then make them listen to us for eternity in the hope they will fix everything for us. You are a human being who has limitations, who can't fix everything, and who is now grieving THAT fact, as long as grieving what has had to come.
As to the young and the "memories " they want to make. Bless their hearts, but they haven't yet a clue about life. It's OK. It is where it should be in the passages. They are full of idealism, and the belief that everything has a fix.
I sometimes think we stay in guilt in order not to have to move to grief just because we need a "reason" and need a thought that "it might have been fixed". It is so hard to come to the finality of hopelessness and loss. But eventually we have to make that journey.
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Reply to AlvaDeer
Mrsrubee Nov 3, 2020
I LOVE your description of sainthood! Too funny; too true.
A fellow caregiver advised me to focus on my wife's gain, not my loss.
Helpful Answer (6)
Reply to HomelyandBald

Dear sweet caregiver
First of all most of most of us truly understand and are here to love and support each other. God bless you for taking care of him for 11 years. I truly understand and believe that most of us caregivers all reach a point to where it’s simply enough. I’m there right now. I think your decision was the best of both of you. My goal is to get my mom placed soon as I can’t take care of her anymore. Placing a loved one is nothing to feel guilty about, and you now get to visit with him
and ENJOY that time instead of being so worn out. God bless you and your family and keep you in the palm of His hand.
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Reply to Momsonlychild
Frances73 Nov 1, 2020
So true, I am tired of hearing people say that they "would never put my Mom in a HOME," Unless you have lived with an ill, infirm, mentally declining adult you have no right to make judgements of my decision. A yoga teacher once told us to Observe but do not Judge. Great advice.
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I know this feeling so well. Your post brought it right back to my heart. I had to place my dad in an assisted living. It was not easy. Covid made things even more difficult. He was so strong to go, but I remember looking back it him before leaving. He looked like a frightened little boy on the first day of kindergarten. I felt so many different feelings, but one was relief. I knew he would be as safe as possible. I also mislabeled the “g” word as AlvaDeer mentioned. I was experiencing grief...but thought it was guilt. You and your family are in my thoughts and prayers.
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Reply to Sunnydayze

There is relief. There is guilt.
There were many days after my Husband died when I thought..I have to get home, the caregiver has to leave by 3. Only to remember that there was no caregiver.
It was a long time before I could sleep through the night without waking up thinking I had a brief to change, or I had to re-position him.
Yes the holidays will be difficult. They will be different. But this year everyone's holidays will be "different".
Enjoy the holidays as best as you can. Talk about your husband. Make him still a part of your day. This year though you won't have to worry about what is going to happen. Will he want to go home, will he want others to leave, will he aspirate the mashed potatoes, will he be overly tired, will he get angry that there are a lot of people around, if you are traveling to someone house will you be able to change his clothes if his brief leaks, will you have brought enough briefs with you All the things that caregivers worry about.
For several years now I have Volunteered with a group of Veterans and we put up flags. During the display we take turns standing watch while the display is up. During that time, every hour we will read some of the names of the men and women that have been killed that are from our state by the time we take down the display all the names have been read at least 1 time. When asked why we do that this is what we say:
A soldier dies twice, once when he takes his last breath; and he dies again when he is forgotten.
Your husband will not be forgotten.
Talk about him.
Tell the grandkids what he loved to do.
Tell your grandson that he has Grandpa's nose, or smile.
Tell everyone the funny story about ---------------
Tell everyone where you met and how you met, where you went on your first date and how nervous you were.
If you keep your husband around in the stories you tell, the things you do then others will feel comfortable talking about him as well. Tell your son that his son WILL know Grandpa because you will keep him with you in your hearts, minds and in spirit.
This will also help when your husband does die. So many people are afraid to talk about a loved one that has died for fear that it will make you cry, make you sad like you are not already sad.
By the way if you can arrange it when you do visit ask the nurse or whoever is in charge where he is if they can bring him a bowl of ice cream when you visit, tell him it is from you. If you stop and get ice cream yourself you can eat it together. (I use any excuse to eat ice cream!)

You are not selfish.
You have done a lot of caregiving over the years.
Let him be cared for by others.
Caregiving is stressful and it is time to take care of yourself now.
With Veteran's Day looming...Thank him for his Service, thank you for your service to him. (and if you are also a Veteran, thank you for your Service as well)
Helpful Answer (5)
Reply to Grandma1954

You did not give your husband this terrible disease, so don't carry the guilt of him having Alz.! It sounds like your husband was placed because his needs were to great for you to handle on your own, he needed 24/7 supervision that comes from professional caregivers. Continue to advocate for him the best way you can during this pandemic. Take care of yourself so you will be around to advocate for him!

The pandemic is hard for all residents in long-term care communities but it is particularly hard for residents with dementia. They are unable to process a pandemic and don't understand why their families are not coming to see them. Many of my clients who have dementia in long-term care communities are feeling like their families have abandon them because they can't process the current visitation restrictions.

Continue to talk to him on the phone. Many communities are doing FaceTime and video conferencing so residents and families can connect. Great idea for most but again some residents with dementia cannot process a two dimensional video call they need to see a three dimensional figure. This is a result of the progression of the dementia. Some of my clients have become fearful when they see their loved one on a video conference call. Sometimes the best option is the "window visit".

If you need help arranging a "window visit" reach out to your local Long-term Care Ombudsman Program, they could advocate for you and your loved one. There is not cost for their help.

I wish you the best, keep us updated on how things are going. Remember, you did NOT give your husband this terrible disease so don't carry the guilt of the disease.
Helpful Answer (5)
Reply to cjwilson

Not only is this a change for hubby, the biggest change is for you. You have to find a new normal at your house and it may take awhile. I'm sorry for the mixed feelings you have at this time. A big hug!

To keep family and the kids in some sort of contact, ask about bringing an ipad or other device where, with some assistance on his end, he could see you and the family and kids could have some interaction with him.

Bless you and the family as your day to day lives take this new phase. If you believe in God, ask for strength. Pat yourself on the back for what you've done in the past - it made a difference in his life.
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Reply to my2cents

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