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My husband got so bad about wandering away + taking everything apart + peeing on the floor + the constant food mess he made everyday, he had a bad breakdown and then couldn't even talk. The VA recomended long term care for him in a VA contracted home, I toured the home and it was very nice with caring staff. I finally took him up there after backing out twice, I'm surprised they took him. The next morning the relief I felt was so amazing and I thought shame on you!! Poor guy up there not knowing what's going on. I couldn't help it I was just so tired after taking care of him and now I can go where I want, eat what I want, take a nap, go to bed at night without getting up several times to check on him. I loved him when he was himself, now this child he is now is like a 2 yr. old, there's no reaching him at all. Jesus I'm so sorry but then again I'm so relieved and happy !! Dixie

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Good for you.

I imagine it's wonderfully freeing to be able to place a LO in a facility that will take better care of them.

Don't let anyone guilt you over this. CG is exhausting, simply put. You did your best and now it's time to move to the next chapter in your life.

((Hugs))
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After being a caregiver and living thru the unbelievably difficult years caring for my wife, relief was the one emotion I was grateful to experience. And although I was still her advocate, but now her secondary caregiver (the MC staff was primary) I could begin to put my life back together without worrying where she had wandered off to at 2 in the morning. The difficult part was being separated, but we all have to come to the realization that our LO needs better care than we can provide. Don't apologize to the Lord or anyone else. You gave of yourself those many years at home, there's nothing selfish or shameful about that.

But you're journey isn't over. There's still the grief of anticipating his death and the emotions that will follow when he is gone. You might want to read about grief and how to deal with it. One book I recommend is Getting to the Other Side of Grief- Overcoming the Loss of a Spouse by Susan J. Smeenge. You might think it's too early for such a book, but it's not.

I'm pleased you found relief and some happiness in placing your husband where he can get the best care, and you can start to slowly pick up the pieces of your life.
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Placing your husband with advanced Alzheimer's into long term care is akin to placing a very sick individual into the hospital for a disease. Why is there no guilt with hospitalization, yet there is a need to feel shame, guilt & apologize to Jesus for the other? It makes no sense. Your DH is safe & well cared for in a place where he can socialize with others in the same boat, and that's nothing to slough off either!

Remember that there are TWO lives that have been greatly affected by the horrible disease known as Alzheimer's, yet you're only focusing on ONE: his life. You matter too.

You did the right thing. Now you can go visit your DH and become the wife again instead of his exhausted and stressed out caregiver.

Allow yourself the luxury to relax and breathe now; you've earned it.
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NeedHelpWithMom Apr 2021
Absolutely! You know how this works. You are an advocate and caregiver that is overseeing your mom’s care.

You also have experience as an employee of a facility that saw the larger picture for many families and residents.

Everyone can benefit from your wisdom of learning how the advantages of facility care works in everyone’s favor, certainly from the caregiver’s point but most of all how it is beneficial for the residents at the facility.
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Don't feel bad for feeling good.
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Sensible lady! May it go well with you both xxx
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"I loved him when he was himself, now this child he is now is like a 2 yr. old"

Well said. The man u married is no longer there. Its not his fault and it isn't your fault that he has this desease. You kept him home as long as you could but now its time for someone else to take the reins. The first night Mom was in the AL was the first night I had a good sleep in 22 months. I never slept soundly in that time. It was like having a baby again and I hadn't had one of them in 30 years. She would wake up almost every night. Yes, I was happy that I no longer had to toilet her. I have a split level and had her in the lower level. She had her bed, sitting area, TV and bath room. She could look up the stairs and see us milling around. But, I couldn't have her on my main level because I had 3 flights of stairs. I would have to watch her constantly. So placing her in an AL was heaven sent. It was one floor and the building was rectangular. She could walk around inside to her hearts content. All halls lead to the common area. There she could socialize. She loved the entertainment. So, I think it was a win win.

My DH is addimate about not being placed in a NH. I have told him I cannot promise anything. He is 5ft 10in and 205 lbs to my 5ft. I will keep him home as long as possible.

So please don't feel good about being happy.
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lealonnie1 Apr 2021
You may want to change your last line to "So please don't feel BAD about being happy" JoAnn.
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You definitely made the best choice for each of you.

Thanks for sharing your experience.

Others will learn from you and be encouraged by your story.

My husband and I have already told each other not to hesitate to seek placement for each other if needed.
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Good for you...Dixie...hugs 🤗
He will beg & plea to “come home “ but you hold your ground! Don’t weaken & take him back home. Trust the professionals to take care of him...
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Dixie, thank you so much for your question. I am facing a similar decision in the not too distant future. On Monday, I am going to tour 2 facilities for an 8 day respite care for my husband, so I can go on vacation in August. If he does well, I will not feel as badly when the time comes for permanent placement.
All of you lovely people who answered Dixie have helped me tremendously. I felt like I was giving up on him when I have to place him, even though his doctor and I have already discussed it. His doctor flat out told me that I would eventually have to place him two years ago when he was first diagnosed. I feel so badly, because he waited on me hand and foot through neck surgery (flat on mt back for two weeks, the PT 3x a week for 4 months) and after rotatir cuff surgery, when I had my arm velcro'd to my waist for 6 weeks, the 6 months PT.
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disgustedtoo May 2021
"I felt like I was giving up on him when I have to place him..."

You're not giving up on him, just on all the work you have to do around him! That gives you time to breathe AND then perhaps enjoy visits with him.

It does make it hard when he was such a loving husband who doted on you when you were down and out. The difference is your conditions were more likely to get better and you would heal so you could resume being you. Sadly that's not the case with dementia.

If possible, try to make the 8 day respite permanent. Moving does impact those with dementia badly, sometimes resulting in regression. It's also in the time frame they generally recommend staying away, to allow the person to try to acclimate to their new surroundings.

If he's like many others, he may beg and plead to go home, but steel yourself. It is much better to leave the "hard" work to those who are better at it, who get to go home and night and come back refreshed. Then YOU can be refreshed and be able to visit and try to enjoy some of his good moments.
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I think relief is an absolutely normal reaction. Normal and actually positive.

From.Wikipeadia: "Relief is a positive emotion experienced when something unpleasant, painful or distressing has not happened or has come to an end."
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disgustedtoo May 2021
A former coworker bought a vanity plate for me way back in the day... It said:

How do you spell relief?
D-I-V-O-R-C-E

She wanted me to put it on my car. I told her she could come over and put it on when he was picking up the kids for a visit!

(It was a relief in one sense, but it didn't eliminate all the issues. So long as the kids were not "emancipated", he made life miserable sometimes!)
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It's a human thing to feel relief when a weight is lifted. I remember an article on caregiving that noted that caring for a loved one may sometimes mean putting them in the physical care of others.
Sounds like you found a good place; when you visit, you should have further relief, seeing that he's okay.
He's been robbed of himself. You have your memories of the person he was and, for that person's sake, you're giving that new person the best you can give. Remember that when this first wave of euphoria passes and you start second-guessing yourself.
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Hello everyone. I read different t stories on “caregiving”. What a responsibility,life changing experience.
I am watching my BF travel down this road caretaking for parent.
I feel a rollacoaster ride on my life as well. I love him dearly but it’s exhausting for him as well as for close parties evolved.
Pray, mediate ,and do create some social activities for yourself. This is a supportive web site. Stay with it!
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There are times when caring for someone else is too much, and beyond the capability of one person. Forgive yourself, you're doing your best. Try to visit him as much as you can, and now you can make the visits quality time to express your love and support for him. Even in a good facility the aides will treat a client better if they know that a family member will be coming to visit frequently.
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Care giving is exhausting! It takes a toll on us, physically, mentally and emotionally. We all need rest and self-care. It is normal to feel relieved to be free of the burdens of caregiving. For this very reason Hospice offers respite.
You are able to rest now. Do not feel guilty at all.
I am sure after you rest, you will visit him often.
Good for you, you made the tough decision, many do not make and got support, helping him and yourself.
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I feel great relief that my mother is in a nursing home. My history is different than yours, but knowing she is where a rotating staff and multiple strong younger people can toilet her, dress her and transfer her makes it safe for her. Also there are several angelic and patient social workers and nurses that can deal with her constant anxiety, paranoia and combative behaviors that I would never have been able to deal with on my own. It would have been suicide to have her here. I still feel sad sometimes that she is confused and doesn’t understand her condition, care needs or why she is there, but that is part of the disease. I didn’t cause her dementia or decline and would wish for her life to be different. I can only insure that she has proper care and oversight. And that is in a nursing home.
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I felt so much relief putting my dad into a great home 3 months ago. Because he never sleeps and many other behaviors I get a call about every other day. I’m more stressed out now than ever. Good luck I’m beyond heart break and so tired.
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A friend's mother commented that she had not slept undisturbed through the night in memory when her husband went to hospice. Just being able to rest is a great, and necessary, relief.
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Do not feel guilty. You did as much as you could for him. The level of his care became such that it was no longer safe to keep him at home. He is much safer in long-term care. You did the right thing.
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Dear Dixie,
You have been suffering from caregiving burnout. Since you couldn't get a full night's sleep and his care was becoming unending, placement into a fulltime residence was necessary. No one person can care for another 24/7 with limited sleep. The relief - and joy - you feel is the heavy burden of stress being lifted off your shoulders. You are not taking joy in the separation but finally having your needs met. Don't ruin it with shame.

Visit him when you can. Make the time together as sweet as you can - bring favorite treats, share favorite music, do simple activities he enjoys... Then be grateful that you can still be together at times. During times away, rejoice in all the things you can still do on your own.
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One can only do so much on their own when caring for a loved one lost to dementia. It is normal to feel relief. We can get so immersed in caring for others that we lose ourselves. The relief you feel is good. God bless
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It's always a relief to have the burden put on others.

It's a sad situation for him, but at least you tried.

In my opinion, the best solution if you can afford it is to have hired help and let him stay in his own home.

Prayers
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disgustedtoo May 2021
EVERY situation is unique.

What works for some doesn't work for everyone.

Read Joannona's comment, posted just after yours.

The "best" solution is what works best for EVERYONE involved.
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I read your post and I can relate 100%. I tried in home care but my husband was having no part it. When I leave the home, having a caregiver in our home to take care of my husband, he became agitated and threatened the caregiver with his fists and/or try to escape from the yard. I tried 3 different services with the same result. Our daughters tried to give me relief but he treated them unkindly and asked them repeatedly to leave. I moved him to a memory care facility and it was very difficult to leave him but such a big relief. The guilt, however, does not diminish. I thought myself selfish, thinking of my own good instead of his. No one really knows what it is like to be a 24/7 caregiver until you walk the same path.
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You did the right thing--caregiving is HARD and STRESSFUL and if you do not have the social support such as other family members sharing the burden, not to forget the financial burden--you SHOULD put them in a nursing home because the depression, frustration and anxiety caring for someone like this can lead to abuse if you truly cannot put yourself in the caregiving role. The caregiver can self destruct as well.

Caregiving requires a LOT of social and financial support to do this successfully. So if you and your husband does not have the financial means, you need to put him in a nursing home.

***When they start wandering, they require 24/7 care. I do mean around the clock.***
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No Dixie. I would say this is an honest reaction. Do know it may not last 100% and there may be times when there is more leisure to think that you will actually miss him, even changed as he was.
I will also tell you that when/if he passes you may feel the same relief. In all honesty my brother was likely the best man I ever knew and was for all my life the Hansel to my Gretel in any forest of life. I loved him so much. But I felt nothing so much as relief when he died a year ago after a diagnosis of probably early Lewy's. He didn't want to go on that long slow slide losing control and his own memories. And I didn't want it for him. He got a sepsis from a cellulitis and passed before he could suffer every sling and arrow of that awful disease, and I don't regret it. I miss him, but I don't regret it, not for HIM, and not for ME.
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Dixierose, it seems that would be a very normal reaction. After all your love, care and work, you got him this far and now you have placed him in caring, capable hands. You are an individual also, who needs comfort, happiness and enjoyment of life and you certainly deserve that. Enjoy your life to the fullest. Sounds like even the most simple, everyday things are a renewed pleasure to you now. Good for you.
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dixierose--To me it looks as if you are completely NORMAL in your feeling of relief, but the feeling of guilt, while not justified, shows that you still love your husband.
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Your feelings are valid.

You did what was best for both of you by placing him in care where there are multiple people to look after his needs.

Your feelings may change over time, that is ok too.

When my last child moved out, friends told me to expect to feel depressed and suffer from empty nest syndrome. Me I was ecstatic to no longer have to put other people first in all my daily activities and planning. It was the first time in 30 years that I was not responsible for someone else and it was liberating.
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My god, of course it was a good move to put him in nursing home. You simply could not continue to care for him with Alzheimers - it would have sooner than later put you right along side of him as this would have destroyed you. Thank god you did this - he is safe and you can live your life. You did the only right thing you could have done.
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You absolutely did the right thing. I can understand you feeling guilty but you have a life to live and your husband is safe and being cared for. Don't feel bad, this is a new beginning for both of you x
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Dear Dixierose,
I write from the patients perspective. I was diagnosed with Early Onset ALZ 5 yrs ago next month. I give credit to the Holy Spirit for guiding me to Agingcare. I made it a mission to learn as much as I could about this disease and have shared info with my DW and adult and teenage children. I want to encourage others that read this, to share this site with your family so they can understand what the future will be bringing in to their lives. Most recently I've thought I was in Mid Stages, I had a Neuropsych exam said I was moderate to severe and need 24/7 care. My PC and Neurologist agree with me that they believe I am in mid stages. The neuropsych doctor completely ignored the fact that I've had Cognitive Learning issues since I was 3 yrs old and my parents got me in to a program at Syracuse Univ for children with Cognitive Problems and I went there for tutoring from age 3-14. They then determined I reached my learning peak particularly as it related to math and science. I did above average in foreign language, history and English Composition.
I was told after my first Neuropsych exam in 1962 that I'd never hold a job, drive a car, own a house, or manage my money. Well, the doctor in 1962 was wrong, I had a 38yr career in the travel industry, and was in management of two travel agency's, I've owned two houses, and my DW and I have managed to acquire significant financial success, and I did they vast majority of managing our finances. I thank God the Father, Son and Holy Spirit, for all of the gifts we've received. I also thank them for putting my parents, family friends, relatives and the Sisters of St. Joseph, in my life, that did not accept my 1962 diagnosis, and never gave up on me. I was diagnosed as permanently disable by Social Security.
We have an appointment next month with the Neuropsych Doctor and ask him why he thinks I need 24/7 care, I am still able to shower and shave on my own each day, do the laundry, cut grass, vacuum the house, and manage my medications. Yes, I forget a dose once or twice a week of one or two of my meds. I stopped driving on my own 14 mos ago, I also stopped cooking when I am home alone. I can safely operate a microwave, and coffee pot.
The point of my message is to help people understand that a diagnosis of ALZ does not mean you can't continue to contribute to your family. My DW knows my wishes for the time I need to be placed in MC environment that I want her to move me 100 mi from where we live, so that neither she nor my adult children will feel like they have to spend every free moment visiting me and so they can live their own lives, and create a new future for themselves, and my DW who is 8 yrs younger than me. I want her to feel free to date, divorce me if she wants, and make a new life for herself. My DW has a lot to offer another companion.
We were in the process of settling our legal affairs, created a Trust in my DW's name, I gave up all of my interest in our home, bank accounts, cars etc, my DW agreed to be my DPOA for both Medical and Financial affairs. I hope this advice is helpful to all who read this.
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NinjaWarrior3 May 2021
You are amazing.
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