Follow
Share

After taking care of my 73 year old husband with early-onset Alzheimer's for over ten years, I had to put him in memory care six months ago. He had become dangerous to me. Threatened me. Did not recognize me any longer. Saw me as an impostor. I had no choice but to place him. I was a burned out nervous wreck. We've been married 52 years and I still love him. I KNEW placing him wasn't going to hold together. I JUST KNEW IT! How did I know it? I don't know. Just a feeling that proved to be true.


He just got thrown out of that memory care center last week for aggressive behavior. I can't believe it. I feel like this: "I've done EVERYTHING FOR YOU THAT I KNOW TO DO! I'M AT WITS END. I'm going broke trying to pay for your care. I've got you in 5 star facilities where you'll get the best of everything. The very least you could do is behave yourself!" (I know......it's unrealistic to expect that. It's just simply how I feel). I'm still tired from the ten years of care giving.


Last week I quickly had to find him another place to live. He's been there three days. I have to admit: I have not even called to check on him. I will, but I haven't yet. Of course, can't visit because of the virus. Have not been able to see him since March 4. I'm no more settled than I was six months ago when he left this house. Every time the phone rings, I go, "Oh no......" And sure enough, it's yet another issue that gets dumped on me to solve. If this new facility throws him out, I don't know where we go next with all of this. Do I have the same feeling that nothing is going to work out? Yep. I do.


I have learned this: Putting them in a facility does NOT solve your problems! There are still sleepless nights and dread for the future. I haven't had a happy day in so long, I wouldn't know what to do with one. Before him, I had both my parents and his mother with the same disease. But I didn't have facility issues.

This question has been closed for answers. Ask a New Question.
He’s beyond memory care & should be in nursing home. Usually, when they become aggressive & violent, (my 93 yo mother does, too), the SNF sends them to psych hospital for medication adjustment & observation. Then when they are stabilized, sent back to SNF. When my mother (she’s at home) fails to calm down, her neurologist suggested increase dosage of medication. Tell them, under no circumstances are they to release him without having somewhere else to go!!! You can’t take him back home or you’ll drop dead. HUGS 🤗
Helpful Answer (5)
Report
sister46 May 2020
My elder attorney said nursing homes in Florida won't take these patients until they break a hip. That's the ticket for getting in. He was in Adult Behavioral ER last week for a day. They did extensive testing and sent him right back to the memory care center which promptly called me and said he has to go. Physically, there is virtually nothing wrong with him. He used to be a marathon runner. It's just his mind.
(0)
Report
Have you discussed the outbursts with his doctor? There are medications that can be used to calm him. I am not saying make him unresponsive but enough to be able to control the outbursts.
Different types of dementia can cause people to react differently, and people can have more than 1 type of dementia so a correct diagnosis can be important.
You have nothing to feel guilty about, as I have said in many posts safety should be the number 1 priority. Safety for the caregiver as well as the person you are caring for. And this includes physical safety as well as emotional/mental safety. You did the best you could for longer than you probably should have.
Helpful Answer (2)
Report
sister46 May 2020
Doctor (geriatric neurologist) knows. She has changed his meds several times. (And I'm changing HER out this week). He just seems to go from bad to worse.
(0)
Report
He needs to be evaluated by a geriatric psychiatrist. Perhaps admission to a "senior behavioral init" or psych hospital. Not something under his control.

((((Hugs))))
Helpful Answer (0)
Report
sister46 May 2020
He has been evaluated and is being treated by a geriatric neurologist. She's changed his meds several times. He was sent to the Adult Behavior ER Unit at a local hospital last week and had a jillion tests. They did not admit him. Said he didn't need it and sent him back to the facility that threw him out the next day. He's "physically" perfect. He was a marathon runner in younger years. It's just his mind is gone. I expect a psych hospital will be in his future. Probably this year.
(1)
Report
Dear sister46,
I feel I almost know you. I, too, was married to a wonderful woman for 52 years. I, too, had to place her in memory care because of the her delusions, wandering, irrational behavior and my despair. In MC she became angry, resentful and incorrigible. The director suggested she be sent to a psychiatric hospital. After only 12 days she was released back to MC where she finished out her days (18 months). MC never threatened to discharge her. Does his facility offer such a remedy for his behavior? I always suggest asking a facility how they would handle such a situation. If the facility can't handle his behavior, they should be obligated to find another place. Certainly, they cannot simply release him into the community under your care.

Please see if there is a dementia support group in your area. Call the Alz Assn, your local Area Agency on Aging or your state Dept of Aging to find out. They are great source of comfort knowing you're not alone in this endeavor.

The feeling of guilt is universal among caregivers who place their LO in MC, but AD gives you no other choice. After 2 1/2 years, loneliness still prevails. No longer guilt, however, because I know, even though she was in a facility, I was taking care of her.

I hope his current facility has a plan to address his behavior. Their are treatments. Since my wife's passing, I have prayed every day for those with dementia and their caregivers. I pray for you, also.
Helpful Answer (5)
Report
sister46 May 2020
Thank you for praying. I know God has everything under control. I just feel like I DON'T!!!
Yes, the new facility claimed they can handle him. However, they had not met him yet when they said that and had not seen him act out. I think that's why I'm reluctant to call and see how he's doing and feel like, at least temporarily, "ignorance is bliss". But I will call tomorrow. I was told by the old facility that he gets mad and throws chairs and bangs on tables.

When I said he was "thrown out" of former facility, I don't mean that in the literal sense. They can't put these people out on the street. I know that. I was called at 7:00 a.m. and told to place him somewhere else ASAP because he couldn't continue living there. I was NOT given the 45 days' notice that the lease called for. But I didn't want him there 45 more days if THEY didn't want him there! Asking for trouble. I don't want him hurt and because of the virus, I can't get in to see him in person and see what condition he's in. That bothers me. Before it was over, I was as anxious as they were to move him. I didn't even get to see him the day he was moved. Once again, because of the virus.

Interesting thing, the old facility told me they had called the sheriff the day he acted out. Then he was taken by ambulance to the Adult Behavior ER. I've called the sheriff because I want to see their report. I want to see IN WRITING what he actually did. Sheriff's Department has no record of it. I ordered his ER records and they reported him as totally docile and calm. When they asked him in the ER why he did (whatever it was he did), his reply reportedly was, "Oh. I was just playing". That doesn't sound like him at all. He's not capable of giving those kinds of answers. He wouldn't have remembered the incident at all. Certainly wouldn't have evaluated it like that. It feels like I'm in the Twilight Zone. Tomorrow is a new day.
(2)
Report
I’m so sorry. It sounds like he needs to be kept in the psych unit until the geriatric neurologist can figure out the combination of meds.
Helpful Answer (6)
Report
sister46 May 2020
I agree. And the hospital had the chance to keep him in the psych unit 14 days ago when he was taken to the ER. But they wouldn't. They sent him right back to the facility who wanted him out. He's been in the new facility for five days and he's (so far......) doing okay. Behaving himself and making new friends. Oh, and a new doctor.
(2)
Report
I'm so sorry. Know that you and your husband are being lifted up with intentions for the best outcome. Sending you both peace~
Helpful Answer (1)
Report
sister46 May 2020
Thank you.
(0)
Report
I have been through this. My husband misbehaved too. Thank goodness he did not get kicked out! I know this is do hard on you. I cried the first visit on his last rehab stay because I knew he was never returning home.
My heart goes out to you. Its so very hard to manage everything. I managed to hold on to my job too. I will never be the same. Posttraumatic stress still gets to me after 3 years.
Stay strong if you can, and know you had no other choice. Your safety is important too. I thought my husband would kill me and not remember. Our grown son stayed up with him so I could rest. It got so bad that we both could not continue. We were exhausted! Please remember you are not alone. This site helped me cope. Take care!
Helpful Answer (4)
Report
sister46 May 2020
When you say you cried when you realized he was not returning home..........it's a terrible feeling. You lose them twice. The first time is when it hits you they aren't returning home from the facility and you go through that feeling again when they die. It's a double whammy any way you look at it.
(1)
Report
My LO was taken from the MCF to the hospital yesterday because of pneumonia. Hospital called me several times that he is a behavior problem, won’t stay in bed, a fall risk. They got him a sitter in his room but he didn’t like like that. He keeps calling me to get him out. I know what you mean about the phone ringing and you cringe. Two nurses called me to talk to him. I finally told the nurse to have doctor give him a sedative because my talking to him is fruitless. Last night they did. I don’t know why professional nurses who are more knowledgeable than me in medical situations couldn’t figure this out. Each call stressed and upset me. I was told his pneumonia is getting better but I’m unable to sleep because of all the stress..
So I suppose my point is you’re not alone and that you’re doing the best you can.
Helpful Answer (3)
Report
sister46 May 2020
I know what you're saying about the care. I hope your husband recovers entirely from the pneumonia. It really saps their strength.
(1)
Report
I’m so sorry. I read through and was so glad to read your reply that you plan to find another doctor for your husband. I’m a firm believer in firing docs that are of no real help and finding another, someone will help! In the meantime I wish you rest and peace
Helpful Answer (2)
Report
sister46 May 2020
Thanks. That doctor is already gone as of today. I wasted no time on THAT task! We'll see what happens. She immediately ordered a tranquilizer for him and it's what he needed. The other one wouldn't.
(1)
Report
"...I'm going broke trying to pay for your care. I've got you in 5 star facilities where you'll get the best of everything..." You cannot afford 5 star facilities. Start saving your money for yourself and for your own future wellbeing. Find an affordable nursing home and place him there whether that's 30 or 300 miles away. You can get help finding a nursing home:

Florida offers free and confidential health insurance counseling for Medicare beneficiaries, their families, and caregivers through our SHINE (Serving Health Insurance Needs of Elders) Program and you can call the statewide Elder Helpline at 1-800-96-ELDER (1-800-963-5337).

I would contact the Senior Legal Helpline 1-888-895-7873 about the sheriff and ER reports.

Right now there don't seem to be good solutions to your very serious problems with your husband but rather only least bad ones.
Helpful Answer (5)
Report
sister46 May 2020
Thanks for this information.
(2)
Report
See 1 more reply
Hi Sister46,
I am in the same situation as you.  My husband is 71 and has early onset Alzheimer's.  I have not been dealing with this as long as you have.  It's been about 3+ years and I am exhausted also.  My husband also became agitated and aggressive and I decided it was just too much to bear along with all the other responsibilities that I carry. I made the tough decision to place him.  I just can't do it anymore.  We have also been married 52 years. He was in a skilled nursing facility last year and I was told about his behavior and thought it was everyone else not my husband.  I took him out and bought him home.  I realized I was wrong after about 8 months. I hate to hear what might be ahead of me.  I've already had a call and I also cringe when there is a call. I will read and re-read your thread.  My family thinks this is the answer, the Nursing Home, but I fear my fate will be the same as yours, worry, sleepless nights because the NH will want him gone. I am going to pray it will not.  I feel this is so unfair.  After all I took care of my children, my mother, my grandmother and now my husband.  I wanted my retirement to be the time of our lives especially mine after taking care of everyone else all my life.  I thought this would be time for just me.  But I do know what you're feeling because I am walking in your shoes.  I know some may call me selfish but I don't care.
Helpful Answer (1)
Report
sister46 May 2020
Yes, your sentence: "We wanted our retirement to be the best time of our lives". That's so true. It all got ruined, didn't it? Every single bit of it. Seems like all I ever say to my friends (who are living out of their luggage) is, "Good-bye. Have a good time. Be safe!" I sound like a parrot!!!!!!!!!! It's not jealousy. I just wanted to get to do it too. In fact, we could have traveled with THEM.
(4)
Report
See 1 more reply
My husband is also physically fit like yours. His brain is just the problem.
Helpful Answer (0)
Report
sister46 May 2020
Yes, I certainly "get it"! It's such a shame. You look at them and just want to cry.
(1)
Report
Dear Sister46....
Your story is heart wrenching....I'm so sorry you are being "slowly pushed through a keyhole", as the saying goes.
I will share with you the only thing in the world that gives me hope and courage to carry on....and that is making Jesus Christ my absolute Lord and Saviour...
I wouldn't be here anymore if I wasn't saved....if I wasn't a Christian. I despaired over much loss and deep grieving....Christ is for real. Begin to read your Bible...I would start with the book of John. Repent, or turn away from your sins, and ask Him to come save your precious soul, be sincere and honest because He knows all things, and certainly knows insincerity.
Make time to watch on YT, a most fascinating guy who talks to people all the time about the Lord....his name is Ray Comfort. He's sweet, kind, to-the-point, and funny! Please watch him! He's well worth watching...and he's got lots of videos on YT and various films free to all who choose to watch. I call him, Ray of Comfort.... because he is. Please watch him....Ray Comfort.
May you be forever blessed. Shalom! 💖🕊💖
Helpful Answer (2)
Report
sister46 May 2020
Jesus is my Lord and Saviour. I'm a Christian and a strong believer. I've given this whole problem over to Him, but alas, I realize I haven't "let go". He knows the end, I don't. And I don't understand who sooooo much care giving has come my way. Care giving does not come naturally to me. If it had, I would have been a healthcare worker! If you add up the care giving years I've devoted to both my parents, my mother-in-law and my husband, it comes to 34. And I'm 73. I'm just t-i-r-e-d. Thanks for your reply.
(3)
Report
Sister46 - Let go and let God.

No one and certainly not a merciful and loving God wants to see you impoverish yourself or make yourself sick for anything. If you believe, then you must know that God does not want us making ourselves into sacrificial lambs for earthly reasons.

You have love in your heart for your husband; however, that does not mean that you sacrifice yourself indefinitely. After 34 years, you have sacrificed to the point of burnout. Stepping back and letting go and letting God is hard, but you will be so glad once you commit fully to allowing the universe to provide.

Do you have a financial advisor?
Helpful Answer (2)
Report
vicky64 May 2020
Letting go of our troubles is so much harder than talking about it.
And it does not matter what it is about.   Children, teenagers, parents, neighbors, or just our own failures that follow us around like puppies!!   Prayers with all those who are caregiving, in whatever manner they have chosen!!  God Bless You All!
(3)
Report
See 1 more reply
Dear sister46,

When you describe your reaction every time the phone rings, I am right there with you with similar feelings and increased stress level. I have been managing my Dad’s medical and financial affairs for the past 12 years. He has a multitude of medical conditions which have required treatment from many providers including Psychiatry, Neuropsychiatry, Gastroenterology, Orthopedics, Neuroophthalmology, Geriatrics, and Oncology. He has had mild cognitive disorder for the past five years and was finally diagnosed with full-blown dementia following his cancer treatment one year ago.

I just wanted to share some things that I have experienced in the hopes that they may be helpful to you. My dad is currently in his third nursing home. After he developed dementia following his cancer treatment the previous nursing home pressured me to move him to a “more appropriate” long-term care facility As they did not want to deal with his dementia.

Turns out they did him a great favor. The social worker at his current nursing home advised me he is eligible for hospice with additional services for both Dad and the family. I located a good hospice provider based on recommendations from the nursing home, dad‘s primary care physician and doing some online research. If your husband is eligible for hospice, which is covered under Medicare insurance, hospice will meet with you and develop a care plan and they may be able to provide services including a hospice nurse, specific equipment for his comfort, a hospice social worker, a hospice CNA, a hospice chaplain,A music therapist and volunteers to meet your husband’s needs. They will work directly with you and the nursing home to help you ensure your husband’s needs are met. In addition, share your own concerns with the hospice staff to determine what services they may be able to offer for your well-being.

While I have continued to remain In charge of my dad‘s care and in constant communication with his facility, hospice, and my dad, the addition of Hospice has been a godsend for me. The hospice nurse and I were able to determine The appropriate medication for dad when his behavior became volatile which is completely out of character for him. As you have learned, if the patient’s behavior is not “Under control” the facility may force him to leave. So I was greatly relieved to find a medication that enabled my dad’s personality to return, without sedating him to the point of being” a zombie.”

I have also found it helpful discussing coping mechanisms that others have used . To that end, this site has been extremely helpful and informative as has another site http://betterhealthwhileaging.net/. Finally, as many others have already posted Your religious faith can carry you through this extremely difficult time. May God bless you and Care for you. I wish you the best and am confident that you will find the tools You need to live your best life.
Best regards,
Punknjo
Helpful Answer (5)
Report
erwash May 2020
It was my understanding that hospice was for those with < 6 months to live? AND if you can feed yourself you are NOT eligible?
(0)
Report
See 1 more reply
No one will tolerate "aggressive behavior". Ativan works.
You need counseling to deal with your separation. You will always have those 53 years as long as you live. The counseling will help you to adjust and take on your own "life".
Helpful Answer (2)
Report

I feel like crying for what you're going through, my friend. It's all just TOO MUCH, isn't it? While I am not in the same position as you are with a DH in Memory Care, I do have a mother in Memory Care; every time the phone rings and I see who's calling, my heart lurches and then drops to my feet. What now? What next? She's fallen 46x so far. Been to the hospital (not for falls, though, believe it or not) about a dozen times at least. Half a dozen trips to the ER. Just one thing after another since 2011. Now she's lying (more so than usual) about what's going on, saying how 'sick' she is and how she's 'throwing up and throwing up and throwing up' and all sorts of other things. I call to 'fact check' with the ALF and it's always either a bald faced lie or highly exaggerated talk. She's fine. At 93, she's in better physical condition than I am at 63. Then again, she's been pampered and looked after for her entire life, and I have been doing the looking after for my entire life. See where I'm going with this? I went gray at 28 for a good reason. She allowed herself to go gray at 92, only because it was too expensive to continue getting her hair dyed BLONDE every month. She's extremely cheap and has no idea that her room & board is over $6500 a month. Yeah, I do all of her finances too.

Get a good geri-psych doc involved with your DHs care. Get him medicated right away. The violent behavior should be pretty straightforward to calm down so he can stay PUT where he is.

This is NOT just about your DH. It's about YOU, too. So often, we get SO caught up in caring for others that we lose OURSELVES completely in the process. Your husband has dementia; he likely will not remember what happens tomorrow. You, on the other hand, WILL. Please see about getting some counseling and perhaps some medication for yourself as well so you can try to rebuild your life now. Once you get DH squared away with the required medication to stabilize his moods, it's time to work on YOU and to make YOU happy again.

You've done enough. This miserable disease has taken your loved ones away from you. You owe it to yourself now (and to THEM as well) to live your best life. God doesn't want any of His children to do any less.

Wishing you all the best moving forward
Helpful Answer (7)
Report
erwash May 2020
How do you manage to pay $6500/month?
(0)
Report
See 1 more reply
@erwash....
My Husband was on Hospice for just over 3 years.
When he started on Hospice he was able to feed himself.
These are not the only criteria that must be met for Hospice eligibility.
Yes, standard is 6 months or less if the disease that makes the person eligible for Hospice takes a "normal" course.
but there are many people on Hospice that can feed themselves, care for themselves and do many of the ADL's.
Helpful Answer (1)
Report

sister46: Firstly, big hugs ((( ))) to you. Imho, you may need counseling for yourself, else YOU fall faint and ill. It happens. You may ask where and when you can find the time for it, but it is imperative that you do, as you haven't had a happy day in so long. Many prayers sent to you, dear lady.
Helpful Answer (1)
Report
sister46 May 2020
Thank you!
(0)
Report
I read your post with a sinking heart. I too have a husband with early onset. He is 69 years old. His symptoms started in 2006, he was diagnosed with MCI in 2012. Then in 2016 he got the AD diagnosis. I am so tired of the responsibility for his care. He has become uncooperative and argumentative. He goes to a senior center 3 days a week. It is a tremendous help. I know the day is coming when he will need full time care but he will fight me tooth and nail. And I am trying to manage our finances for my future as well. I am 67 and in pretty good health.
I did not consider that a facility could ask for him to be moved. He is generally better with others than he is me.
Helpful Answer (1)
Report
sister46 May 2020
They cycle through being pretty good with you and rejecting towards others, then reverse it and YOU'RE the enemy for awhile. Alternatively, you become the PERMANENT enemy. Each day is different. Be careful of him going for a long period of time and not knowing who you really are. You will sense it. Sometimes you become an impostor--and that's when it can get dangerous for you. They can snap in an instant. I'm saying, IN AN INSTANT! Totally unexpected. Unprovoked.
Oh yes, a facility can ask for them to be moved and I found out last week when it happened to me they can do it without notice. They can also lie all they want to. The hospital will help them with that in order to get him moved. And the memory facility can put a block on you if you irk them in any way. My "refund" from the old facility for half the month of May came yesterday. I was promised a certain amount. When the check arrived, nearly $400.00 had been taken out for "damages". I just have to take their word for it that he damaged something. No photos. No proof. No explanation. And I can't get in to see him at his new facility because of the virus.
I'm trying to bury myself in reading and sewing. But every few minutes, the reality of what has happened hits like a brick! I have 300 year old giant Live Oaks in my front yard. I want to sit under one of them and watch grass grow! I need to heal.
If you can't get your husband to a memory care facility (and I couldn't get mine there either. We had to have a catastrophe that required the sheriff and EMS to come and take him out of our home to a hospital where he was put in a straight jacket--a heartbreak situation for sure--but it was necessary for my safety to remove him from our home), perhaps the day care facility your husband attends would cooperate with you in getting him into a facility. Perhaps instead of coming back home one day, you could have arrangements made to have him transported from day care to a memory facility to live. They'll need some back-up because he might fight them. It will create guilt--I can tell you that firsthand. So be prepared to be tough and try to stay in the background unseen so that he doesn't "blame" you. He may not remember the logistics of being moved, but he may associate you with something "bad" that happened to him. Try to avoid that if you can. Let the professionals handle those logistics. But you may be approaching that juncture. It's the hardest thing you will ever do. You have my prayers and my support. Bless you.
If you make this move, would love to hear from you as to how it went.
(1)
Report
Dear Sister46,  I can feel your pain.  My husband was transferred directly to the nursing home from the hospital.  Well it's only been a week and a half and off he goes back to the adult behavioral ward of the hospital.  I told you I also cringe when the phone rings.  He should have been on his usual med of risperidone, but they changed it to others and I knew he would not last.  I am exhausted and I feel glad I can not see him right now.  I have no answers.  I am to pay the first month's nursing home stay and he is gone already.  I feel so sorry for him, but not sorry enough for him to return home.  I've gone my distance and I need to take care of myself for a change.  I think the nursing home will take him back but I know he is on the 3 strikes and you're out system.  I pray every night for him and myself and I realize I have to let go and let God.  I can't give him what he needs anymore and I am afraid for myself.  I read about the hospice from an earlier thread and I was wondering how that happens when the person is not ready to die soon.
Helpful Answer (1)
Report

Sister46 and everyone else, did you know that 40% of caregivers of a LO die before the Alzheimer's patient because of the toll that it takes to care for their LO.  Please, please remember to take care of yourself.  Don't be a statistic.  Don't be plagued by guilt.  Remember if your LO was in his/her right mind, they would not want you to sacrifice your own health and life for theirs.
Helpful Answer (1)
Report

This is a terrible strain you have been going through. I can really emphasize! I may suggest to talking to someone at A Place for Mom to inquire about assistance with finding the next facility, should that be needed, in the future. This would take that responsibility away, I hope. Perhaps they can even deal with the current facility to agree to a stay, in order to allow the time needed to get him placed elsewhere. Don't feel guilty. This is a wake up call that you can't do it alone. Most people can't do it alone. You are entitled to a happy life now. God bless you! All best. Linda
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter