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My husband with ALZ passed away two months ago. After caring for him in our home for four years, I reached the point where I couldn't do it anymore. I was actually concerned I was going to die before he did from the stress. He was in a national chain MC facility for four days, then sent to the hospital for a "psych evaluation" when he was deemed "unmanageable". The facility doctor had quadrupled his Seroquel dose the 2nd day he was there (possible connection to his behavioral changes?) After two nights in the hospital he went into a private home care facility and died two days later. Prior to all this, I had visited multiple MC facilities and was told by each one that it is best to not visit for the first few weeks and give the person a chance to "bond" with the staff. I was so desperate for a break that I did not process how ridiculous this procedure really is. So you take someone you love that is 100% dependent on you for absolutely everything, and you drop them off in a strange place with strange people and their new caregivers are mostly minimally trained workers barely making minimum wage? And you're asked to not visit while they are "settling in". I would not send my dogs to live with strangers if they became ill, and yet this is how I dealt with my husband's last days on earth? I am so consumed by guilt I can barely breathe. I live in Florida, and Memory Care places are popping up all around me. They charge $4000 to $6000/month. My new personal challenge is to become much more knowledgeable about how these places are regulated and the quality of the oversight provided by the state of Florida. Based on my experience, it is very expensive warehousing of the most vulnerable, and anyone that reads the stages of ALZ knows there will be challenges, especially in the later stages. If a facility can't handle those challenges, what is their reason for existing? Thank you for letting me vent, and if you're looking for MC for your loved one, please be careful.

Thank you to all who responded to my post. This forum is one of the best things we as caregivers have as a way to share our questions, concerns, anger, sadness and guilt.
I pray for all of us.
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JKH I'm so, so sorry to read your story.

It's just such a tragic end to the years of dedicated care and love that you gave your husband. I'm not going to challenge your feelings of guilt, not because I in any way agree that these feelings are an appropriate response to what happened, but because given the events of the last weeks of your husband's life I can see exactly why you would feel like that - no matter how unfair to you it is, no matter how much duress you were under when making these decisions.

There is a lot of poor practice and formulaic care out there; but I think the one overriding reason for that is that best practice and excellent care for advanced dementia is SO specialised and so difficult to establish.

You have had only two months to recover, and that's just not long enough. But when you do, perhaps you'd like to think about ways to use your experience and knowledge and passion, with others, to push for change.
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JKH, I am so sorry for your loss.

My mom was similar, though did not pass until she had been first in a national memory care facility, then a care home, the last two years of her life. She was kicked out of MC after about 18 months then to the care home that was recommended by hospice. All residents at the care home had been kicked out of their previous facilities. The caregiver/resident ratio was lower and the cost lower as well. It was a better situation for mom. But, there was really no care setting would have worked well. It was a case of just doing the best that you can do. Mom was a danger to herself and others.

Mom needed an outside caregiver, on top of memory care or care home costs on and off for two years. She was UNMANAGEABLE! Sometimes this is how it has to be for some, for whatever reason. Not at all fair, is it? They are the chosen that have to suffer terrible symptoms of this wretched disease, that are unmanageable regardless of what meds, activity, staff whatever you can think of that have been done to try to help them be more comfortable.

Try to relieve your guilt by realising and understanding that your husband would not have wanted to live that way, that he would not have wanted to make this so difficult on you. He now recognises how very difficult this was for you, he is very grateful that you did the best you could and loves you for it. He would not have wanted to live with the disease any more than my mom would have. They do not want to become a burden to those they love the most any more than we wouldn't want our loved ones to suffer.

Be easy on yourself knowing you did so much for him for so long. When you couldn't any longer, you handed his care to those that could. You must not think that if you had been a bit stronger he would still be here. He passed, when it was his time. He was burdened by the burden he had become and rest assured that he did not want you to struggle with his care any longer. You did GREAT, and he knows that.

I am so sorry for your loss.
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@jkh300 I am so sorry and I hope you will soon be able to find some peace. Many hugs...
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jkh, your experience breaks my heart. Thank you for this information...it is the good that is coming out of the bad. Hugs and peace to you.
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Thank you both for your comments. AlvaDeer, my husband was 84. He led an amazing life and we had a wonderful life together for 40 years. Other than ALZ and some kidney issues, he was really in good physical health. There was no autopsy. I was only told that he become aggressive with the staff, and they had to send him for the psych evaluation. After the two days in the hospital he went to a private home for care the last two days of his life. His behavior became increasingly erratic, and he was given Ativan which was not a good choice for him. I really believe that he was so confused and bewildered and probably heartbroken that he just gave up. I am relieved he does not have to suffer with this horrible disease any further, no doubt about that. Your last sentence is so true--"People always think it will be easier when they are gone, and are so shocked to realize that it is only MORE loss."
I just want people to understand that placing someone in a Memory Care facility requires a great deal of research and then oversight, so don't be deterred from visiting your loved one--you need to see what is going on.
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I am so sorry for your loss. Please don't feel guilty about placing your husband in memory care. You were doing what you thought best for both of you. Having cared for my mother with dementia/Alzheimer's, I can certainly understand how difficult it is, especially when you have no help, no respite. You need to take care of yourself too and you saw that it was breaking you down and acted accordingly before you became ill. You can't second guess yourself; you had no way of knowing what would happen.

I've always admired most the people that take their own personal losses and turn them into an effort to help others. Every state needs better care facilities for the elderly, be it assisted living, nursing home care, or memory care. If you can be instrumental in making that happen in your state, go for it! It will be a wonderful tribute to your love for your husband.
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I appreciate that you posted here your advice. It certainly is well worth thinking about.
How old was your husband if I may ask? What medical conditions did he have? And most importantly was there an autopsy at all? What were you told about what happened to him?
I would very much appreciate more details. I think that they might give us even more to consider. You are absolutely correct as to this being the advice.
As to guilt, I am afraid good and decent people suffer at it. Psychopaths, the selfish and uncaring, narcissists, and etc are not bothered about it at all. I must assume, given how you spent the time you did in his care, that it is clear in your heart and mind that you did what you could. In all truth, for myself, I would bless the day that my loved one is released from the torment of this long slow slide into Hades. Have whatever feelings you need to to work your way through all the clashing thoughts that will enter your head, but remember, that logical part of your mind that is still in there with you through all those horrific thoughts, that is saying "But you had no choice".; "but you thought you were doing it the RIGHT way".....you know it is right. You are doing what you can about this. Trying to work your way through it, sharing your thoughts on some of the thigns we are "told" is best, and may not be.
Thanks for caring for others while you go through this personal trauma, and I am so sorry for your loss of your husband, both while he was living, and now he is gone. People always think it will be easier when they are gone, and are so shocked to realize that it is only MORE loss.
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