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I am curious as to how others "knew" it was time to move their loved one into assisted living. It seems selfish or self-centered of me to consider moving my husband just because I am exhausted and burned out and occasionally find myself crying uncontrollably for no apparent reason. He started adult daycare 2 months ago and I feel so much happier and relieved during the day. However he is up most of the night pacing and changing clothes. When he does fall asleep he pushes me out of the bed. If I go in the spare room he follows me and the pushing starts again. He does not realize what he is doing. Nevertheless I am sleep deprived. He is tolerating daycare well. That is a miracle, as he didn't want to go and even ran away from home a few times to make me understand he wouldn't go. I had to call the sheriff dept to find him one freezing cold evening. We have special locks on the doors so he can't get out of the house without help but we were outside together when he sneaked away. He isn't violent or mean but gets agitated when he wants to do something and I won't let him. Sometimes he has hallucinations and has cursed at "me" while having a conversation with himself. He can no longer read and understand. He cannot write or sign his name. He has aphasia from left temporal lobe damage so he cannot coherently participate in a conversation or follow directions. Our daughter, our couselor, and our neighbors think it is time for me to at least consider placement for him. His symptoms started in 1999 but we didn't get his current diagnosis until a couple of years ago. It has been a long haul with no end in sight. I love him; I want him to be safe; I want him to be normal again; I want his life to be positive and full of daily joy. I don't want to die from the stress of everything.

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Longears, you know you are trying to do the work of 3 full time caregivers, eventually it will all catch with you. Sounds like you are already crashed and burned. One thing to think about is that about 40% of caregivers pass away leaving behind their love one. Then what? Chances are that person will either go to a relatives house or into Memory Care.

From what you have describe, it is time to think seriously about what to do next. While hubby is at adult day care, make appointments to see the various Assisted Living/Memory Care facilities in your area. You will know as soon as you walk in if the place feels right. Most places will offer you lunch, and I was surprised how good the food was. The place where my Dad moved was set up like a hotel.
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Longears,
It's time.

"It seems selfish or self centered of me to consider moving my husband just because I am exhausted and burned out and occasionally find myself crying uncontrollably for no apparent reason."
THAT is reason enough to place him as soon as you can. You are suffering for caring for him. You don't want to be one of the 40% of caregivers who die taking care of a loved one.

It's time. Don't feel guilty.
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Longears, your question is one I struggled with for a long time, but it was regarding a parent, which I'm sure is easier than when it's regarding a spouse. Even so, the decision to move my dad into the best memory care facility I could find and that was close enough for me to visit daily was still a hard one to make, but was something I knew I had to do due to sleep deprivation and knowing that I was also neglecting my own family.

One thing that I kept in mind while making my decision was what a long-time Alzheimer's support group facilitator told me, that he never knew anyone who, after placing their loved one in a facility, said that they had done that too soon. He had placed his own 65-year-old wife in a memory care facility after several years of care-giving, but only after their children told him that they didn't want to lose their dad in addition to losing their mom.

Like you, I found adult daycare provided some much needed relief, but at 30 hours per week that meant 24/7 caregiving was reduced by just 18% (8760 hours in a year / by 1560 daycare hours). The remaining 7200 hours per year of caregiving equates to the equivalent of 3.5 full-time jobs, but with no time off for holidays, vacations or sick leave. Freqflyer and SueC1957 mentioned that 40% of caregivers die before the person for whom they are providing care and I've read that the 40% increases to 70% for caregivers who are 70 or older. Stress and exhaustion kill and it is not selfish for you to want to survive by moving your husband to the best nearby facility you can find, which will enable you to frequently visit and monitor his care while still leaving some time to rest and take care of yourself. Caregiving is like a flight on a troubled airliner, you need to put on your own oxygen mask first so you can help those who can't do that for themselves. Best wishes.
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"I want him to be safe" --- This says it all. The safest place for your husband is now in a facility where he gets care around the clock. Understand, that since he wanders, it will have to be a memory care facility. I found a good one 10 minutes from my home when I needed a place for my Mom. They only took memory care residents into their assisted living facility.
I, or another family member, visited every day. The staff knew each of us by name. I advocated for my Mom and provided the extras that staff just doesn't have the time for . Hand massages, nail care, trips to ice cream parlors, treats brought to her, walks in the gated gardens, etc. The facility had religious services and it seemed that everyone attended whatever service was going on! : -) And I found that the Rabbis, ministers and Catholic Priests treated each resident with love. Kids from nearby schools and scout troops visited. Music programs played all of the old time music the older residents knew and loved. This was way more than i could have ever done at home by myself.
I worked with the staff to make sure my Mom had the best available care. And, I never felt guilty. When I visited each day, I arrived fully rested and smiling. I brought little treats --- a flower, some old photos to look at, a homemade cookie, a magazine to look at pictures together. Each day I arrived to find my Mom clean and dressed beautifully. I was able to focus on her.
Visit the memory care centers near you. It really sounds like it IS time. Keep us posted.
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Freqflyer, SueC1957 and bicycler, Thank you so much for your responses! The 40% of caregivers dying first scares the heck out of me. Our daughter says she can't lose her mom as well as her daddy. The hours required for care giving 24/7/365 are mind boggling! I never did the math or looked at things from that angle.

Some added threads in the tangled skein: we have a 20 acre cattle farm for which I do all the work and for the past year I am the one who is (supposed to be) keeping up with my mom in assisted living 45 minutes away. I am not doing a very good job on any task right now.

Our counselor is helping me work through the issue that due to my history of being abused as a child, I don't really know when enough is enough or how to assess if I am at the end of my rope.

I am so afraid of making a wrong decision that I am kind of frozen in place.

Bless y'all for taking the time to read and respond!
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can you live in an apartment in AL where you both can live together, yet you yourself will not be burdened with most of the work?
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Geewiz, The memories you have of that time spent with your Mom are wonderful! I would love to enjoy quality time with my husband and be present in the moment. I can't remember a time I wasn't exhausted and worried.

Karsten, Living together in an apartment in AL could work. I would have to sell the house, land and animals for us both to move into AL. Our Primary Care doctor suggested getting a small apartment in town close to the adult daycare, shops, restaurants and medical specialists, but keeping the main house and farm. We would live in town weekdays and on the farm weekends and holidays. I think too many moving parts are involved with that idea!!

Bless you both for considering my question and providing insight!
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You are past burnout and it is time. Personally, I disagree with the idea that you move with your husband into memory care. You do not need it. He does. It would be very complicated for a spouse to be different than the other residents. I saw that once. I also saw staff trying to prevent the well spouse from leaving on occasion because they knew she resided there and were used to preventing residents from leaving. As for bouncing back and forth between an apartment and a farm, it could make thing worse. Stability and routine is important for people with dementia. My mother goes wonky if her laundry is done at a different time or one of her tablemates sits in a different chair.
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When the police get involved is a definite sign. Your husband wanders, prevents you from sleeping, it is about to kill you caring for him so now is the time.

For me, the moment I knew mom needed to be out of her current environment was when I arrived at her house and she was blankly sitting on a stool wearing a dirty flannel nightgown with tangled hair, finishing off a container of Blue Bell ice cream.

I know that things were out of control because I know her, and what would be acceptable and unacceptable to her normally.
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I just jumped on to this after visiting an assisted living facility for my mom. I am facing the same circumstance, but on a smaller scale. She is not as progressed, but I see the writing on the wall. She was a caregiver herself and the stress of it has caused her own health and memory to decline at a rapid pace. She tried to manage her significant other, who recently had to move to a memory care AFH (which is beautiful).
I am an RN, and I have worked with dementia patients, so I have a bit of familiarity with progression and potential issues. I also work full time and cannot care for my mom full time, nor can I come home and be "on the clock" 24/7. What I have seen is that the care facilities can be such a blessing - safety speaking, having a whole team for a giant job, having the right set up, and allowing family self care. The first few weeks are very hard, especially week three (not sure why), but by the fourth week things are usually so much better for all. Everyone matters in this scenario - I am saying this for myself as much as anything, because I am the one who comes last, holds the door, lifts the heavy stuff, goes to bed last, cleans up the messes, you know the drill. It is okay to need help with the burden of care - we were never meant to do it alone. God Bless!!
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Hugs to you, your hubby is very lucky to have you, and it's good that you have the support of your daughter as well.

I agree, there's no shame in getting some help and putting him in memory care where he will be safe.

With my mom, I've realized early on that I can't do this indefinitely and we are looking at AL facilities for her.  With my hubby, I know it would be harder to make that decision if he were at that point, but I would want to make sure he was safe too. The wandering incident sounds like it was really scary. I know you had mentioned on my shadowing post about mom that your hubby is a shadower as well. I know very well how tiring and draining the shadowing can be, and just feeling tired and sleep deprived all the time. 

I would go ahead and look for a nice memory care place. Maybe you can take your daughter with you so you all can look together, and she can be there for support for you while you check out the place, ask questions of the staff, etc.

If it helps, you might think of it like he's still going to day care in a way, but more like a "sleepover" every day. I think you will be able to sleep much better knowing that he's got 24 hour staff to watch over him and attend to his needs, and you will be able to take care of yourself too so that you guys can enjoy your visits and time together without feeling overwhelmed.
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It seems like this is more than you can handle. I would find alternate care for him. As for my mother, the reason why I suggest to her to go into ALF is because she wants all this socialization all,,,,the,,,,time....she goes to adult daycare 3x/week and it’s still not enough...she wants more..if she went into ALF she would have all these people, her age, to talk to and all these activities...I want to do it for her own benefit. She does not want to do that,,no...let’s wreck my life!!!
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As another person just advised, "You are past burnout and it is time." Your spouse will never be "normal" again due to the progressive nature of the disease.

You are of little benefit to your husband if you are "burned out and exhausted." Also, it is no longer safe for both of you to be living in the same place. What will your husband do if you have some unexpected health crisis, such as falling and breaking your hip, or have a stroke? How will you manage to care for him?

For both of your sakes, please investigate an assisted-living place ASAP.
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Rosyday, HolidayEnd, aslanliveshere, Thank you so much for your insights and advice! It is hard for this lumberjack to see the forest for the trees. I keep sawing away at the tree in front of me only to find another tree and another and .... Sigh! My arms get so tired of sawing. Someone told me to realize that once hubby is placed, he is never coming back home. That I need to be confident that I have done everything to the best of my ability or I will fret myself to death with "what if" questions. God bless each of you for taking time to respond.
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FrazzledMama, The shadowing does wear me down. I try settling hubby in his chair with the news on, telling him where I will be in the house, and what chores I will be doing. I ask him to stay put, he says ok, I get busy on chores and next thing I know I trip over him. He doesn't say anything just quietly comes up behind me and hovers. Sometimes I involuntarily scream when he appears out of no where right behind me. With him in daycare I only get shadowed evenings and weekends. :-) Our daughter lives 10 hours away. Her family spends holidays and summer breaks visiting with us. We love the grandkids and want them to be able to remember grandpa. She has a 7 y/o, a 5 y/o, is in the last 2 weeks of a high risk pregnancy and has a large mass in her breast accompanied with bloody discharge. She is scheduled for biopsy of the mass after the baby is born. I am beyond worried!!!

Heidindsrespit1, I think he would enjoy all the people in AL. His daycare staff say he is so sweet, always greeting everyone, shaking hands, helping those who are less physically able. Before he retired he was in charge of a huge staff in an organization with dozens of other supervisors each with a large staff. I know he misses those days even if he can't remember the details. I have the problem with detaching. I worry am I giving up too soon. But then again am I holding him back from being as social as he could be while he still can?

dragonflower, one of my worst fears is me being injured or ill and hubby having no one to care for him! We have an emergency plan worked out with the neighbors, but they also have elderly parents and siblings they help.

Bless all of you who have chimed in with your heartfelt guidance! I so very much appreciate it! I will visit facilities next week. I will let you know how it goes.

P.S. Yesterday mom's AL called and said she needs memory care. She is not ready for a nursing home. Memory care is 3760 per month. Mom only has 1750 per month and we cover the rest. One brother chips in when he can. Sister says they have no money to spare. SIGH!!! It is always something!
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Oh my goodness, how scary about your daughter!! Praying for you both, and for your hubby. Hoping you find a great place that he will like that has really good care. :) Like you mentioned to Heidi, it sounds like it would be good for him to be able to socialize too. That's one reason why I think AL will be good for my mom too, because she's gotten so isolated being at home, and won't get out much due to her anxiety. I'm hoping maybe she will make some friends that she feels comfortable with that might encourage her to participate in the activities they offer.
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FrazzledMama, I am very anxious about my daughter.
Luckily I am too busy to become obsessed with worry. Thank you for the thoughts & prayers.

This is the experience we had with my Mom. She fought tooth & nail against moving into a senior care community. She refused to attend meals & ate cold cereal or sandwiches alone in her room. That lasted about one week. Then she found out they played bingo for money & she was never in her room! She met all the fun folks & she attracted lots of boyfriends & was in hog heaven. Your Mom may resist at first, but it is hard to ignore fun activities & happy people. Every community has folks who love life & enjoy meeting new people. We saw that when we looked at places for her. The activity director will be able to figure out the best person to pair with your Mom to help her get involved. Sending good vibes to y'all.
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Accepting that the person you once knew is gone and will probably never come back to their former self should be a strong motivation to look for as much professional assistance as possible. I've seen so many family care givers go down in misery no matter how strong they started out. It will eventually catch up with you and not in a good way. Help yourself and reach out.
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LOOOOL- "hog heaven" HA! I almost hit the floor when I read that Longears! Keep your sense of humor if you can.

I don't have the experience to help you, as my mom is not there...yet. But thank God we have this community to help us.

Your mom, hubby, daugher and the farm....? Just one of those would make the average person loose their mind! You and your family are in my thoughts and prayers. Please let us know how it all works out. God bless your daughter ten times over.

I just wanted to chime in and tell you how wonderful you are and what a blessing you are to your family. There are Angel's amongst us....and you're one of them. Big hugs Love.
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I was told when I first joined a Support group that when you start asking " When do I know when it is time..." it is time. Because you would not be asking that question if you were not
Exhausted
Burnt out
Hyper vigilant
Having to call the police to help locate him even after taking all sorts of safety measures.
Scared for his safety and yours.

Easy for me to say, it is not my Husband. And I recall saying when we got married..for better or worse, in sickness and in health....
You have to realize this person is NOT the person you married, not the person you made those promises to.
You can be a better Wife if you can focus on him. Not on doing laundry 4 times a day because he soaked through his clothes, the sheets. Not having to worry that he will wander away each time you take him to the store.
Placing him in Memory Care you can visit as often as you like, you can hold hands again and go for a walk and not have to worry if he will escape. When he needs to be changed you don't have to do it, you don't have to do the 4 loads of laundry. You don't have to fight with him to take a shower. You can be a Wife.
Better yet you can start to return to "Normal" what ever that is.
You have lost friends to this, start calling them up because now you can go to lunch, go to the movies, go to a play, dinner.
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My father refused to downsize or to even have help come into his home.The burden on my sister and myself was overwhelming. When he landed in the hospital and the doctor said he could no longer live on his own he had no choice.
Moving to one of our homes was not possible and there are a few nasty Assisted Living Facilities in our area. We shed many tears at the thought of moving him to one. But we did our research and found a great facility. We took my dad there ahead of time and got him used to it. We could even stay for lunch. Then came the move. We spent some extra time with him at first to help him transition.
So does he like it there? No, he LOVES it! And every time we talk to him he tell us so. We are so thrilled that we can go back to being his daughters again.
Hope our experience will help give some perspective as you contemplate your options.
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Longears..look into application for Medicaid if possible. It may take a while but it sounds like she would qualify.
At least then you are not responsible for payments to the facility. After all what are you going to use when it is your turn?
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Longears, I'd like to offer an alternative. I've been caring for my elderly parents in my home for 2 years now, but I have in- home caregivers for the overnight hours and some of the day. It is so much easier and actually can be less expensive than a nursing home. You absolutely deserve a good night's sleep and time to yourself, and you may not have to put him in a home to do it!
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I think you should sell the farm and animals and move to a facility that has independent, assisted living and memory care buildings on one campus. That would allow you to visit him every day but begin to have a life of your own. You would have made friends to help you when passes and won't be isolated on the farm. You will get a new lease on life!
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My mom recently decided it was time for her to move into assisted living. I knew it was the right decision when she had a mini stroke and I injured my back trying to lift her. The message was loud and clear – her needs were beyond what my family and I could physically provide.

Best wishes for you to have plenty of support, clarity, and the ability to take your time making a very complex decision and life transition.
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Hugs to each of you who have responded! I began making those phone calls today. For my mom's situation, I had no idea that nursing homes don't want you unless you are self paying! Where do poor people go when they can't stay at home and can't afford self payment? The social worker says we will have to get Mom admitted to the hospital for at least 3 days, have her evaluated for safety and performing ADLS then have her sent to the nursing home under medicare and then apply for medicaid. She thinks the nursing home will accept medicaid pending status. Medicaid denied her application in March because she was able to function in assisted living. She can feed herself and dress herself if someone hands her the clothes. She cannot bathe, brush her teeth, prepare food, shop for food, use a telephone, clean herself after toileting or remember how, what or when to take medications. Her ALF says she now needs the memory care unit. I call back June 4 to a nursing home that might take her medicaid pending. Fingers crossed for us that the right answer will be found sooner than later!!!

Blessings and hugs to everyone who has responded! I have learned so much from this forum. Each of you is a light to my feet and my path!!!
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bpgagirl22 Jun 2018
An don't forget you have to "spend down" for her medicaid. I worked in the program enrolling Medicare beneficiaries into the Part D drug program for the entire duration of that program and I was the only employee they had without any demerits on my record when it ended. Duh. My Mother was Regional Manager with her Co. in Cust. Svc. for 4 districts when she retired. Hugs to you and what you're going through. Also beware of those Nursing Homes or Assist. Living and their practices of care, ie: how closely they follow their patient's medication orders and how closely they attend to the patient's cleaning and clothes washing practices and theft of their clothes. I know several stories including one of my own Grandmother in Atlanta, GA where she was Diab. allowed to languish in the bed, got bed sores and when Mom and I went down on Vacation to visit, we had to AMA her out that day to a much better one about 150 miles away in the country. We were livid. Kudos to you for hanging in as long as you have and God bless that you find just the right caring place for her. Know this is sooooo hard on you. As I'm a Seer, Grandmama asked me "Did Granddaddy tell you it's ok for me to go?" "Yes Grandmama, he said you need to go." He'd been passed away about 2 years at that point. Sad.
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I have a friend down in Fla. going through this and she's in her 80's! Caring for her ex-husband! In her home! He's a Veteran and has blood clotting issues, balance issues, swelling (edema) has to be on a machine for that, gets up during the night and forgets what he's supposed to be doing, sleeping, drops stuff, gets bleeding injuries and you can guess the rest. I've repeatedly told her to have him moved to Assist. living but she is hell bent on caring for him. He's got VA assistance people coming and checking on him, she has to call 911 every time he falls, THIS IS RIDICULOUS! This is when they must get more 24/7 care! One person just cannot handle this! You must take care of yourself because you're no good to them if you're failing your own care and health!!!
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bpgagirl22, Thank you for your insight & info! My mom has no savings, no house, no car, no investment income, no prepaid funeral plan, nothing but her ss check. She ran out of money about 3 years ago. My brother and I have been paying for everything her ss check didn't cover. Brother had Mom in a ritzy senior community which cost $$$$! When she ran out of money it was inconvenient for him to move her someplace cheaper so he asked me and my sister to help him pay the shortfall. My sister said NO! Finally, last year, Brother moved Mom closer to me which is cheaper. But.....Brother is not keeping up his end of the finances as this time my name is on the facility contract. And the price just went up having Mom in memory care. I can't afford to pay the shortfall for memory care by myself. Sister still says NO! Brother says "the check is in the mail" I hope the person I call on Monday can tell me something positive!!!
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I'll be praying for you "longears" for you to get your Mom to a safe place that you can afford. That never helps being on top of what you're already dealing with. :'( I totally understand. Mama and her brother, now retired Episcopal Rector of his own church, had to deal with Grandmama's move, selling her home after Granddaddy dropped dead, sat down before going out to dinner (happened on my birthday), she walked from the hall through the living room through the dining room to the kitchen he was fine -smiling in his chair, she gets a drink of water, they WERE going out to dinner their weekly at Picadilly and came back and he was slumped over gone. He did however have those "heart attack creases" on his ears was later determined that's what it was - cholesterol. This was the 70's. Now they know about all that. ANYWAY, we were still in Atlanta, she and Uncle JP settled their estate, sold the house, divied up the belongings, she was already frail, had shrunk about 1 ft 1/2 from 5'9" down to 5'2" shorter than me at 5'4.5". We got her settled at his home with him and Aunt Shirley, she was so frail Aunt S had to literally take showers with her to keep her safe. At that point it was agreed about a year later to move her into a Nursing home, the one she had to later about a year more be AMA'd out to the nicer calmer sweeter one up in Dalton or Dahlonega, I can't remember which now, where she finally passed the morning 2 hrs before Mama and I left on vacation to go down and visit and ended up arranging her funeral. Soooooo sad. But I know what you're going through. I'll be praying you get relief in all of this! Hang in there, hugs. heart symbol. It wouldn't let me post that symbol.
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