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My wife is about stage 5 and appears normal to outsiders. She toilets herself, showers, dresses and gets around house with no assistance. She can’t cook, turn the TV on and the microwave confuses her. I do all of the cooking, cleaning and shopping in addition to now running my business from home. I do have to go out to bank, go to post office and attend meetings. She will call me every 5 minutes while I’m away. Bringing her along becomes disruptive as she talks constantly. That said, it’s not a viable option. Even if I have someone stay in the house with her when I’m gone, she still calls me. If I don’t answer she keeps calling. If I do answer, she will still call again and again and again. Taking her phone away is not an option as she carries it everywhere and it seems to be her safety net. I have a well established business and working from home is hard. However, hiring someone to stay with her has not been successful. She is very threatened by anyone being in the house. She gets annoyed with them too easily. When possible, my daughters will stay with her if I have to go out of town. She enjoys them but still calls me to the point where I feel like I am losing it. I’m doing it all and she wants more. I have a few health issues myself and so I need a little peace of mind to deal with them. She is only happy when I am with her or she is at, or going to a doctors appointment. We never had a marriage made in Heaven. She was not the best wife or mother. I stayed because we had children. After that I stayed because there was no point in leaving, there was no place special I wanted to go. She was happy as long as she had the comforts of life. I just accepted the way she was and the way it was.


For the past 4 years I’ve stayed because it is my responsibility to be there for her. If I were to leave, it would all fall on my adult children and they have a difficult time dealing with her as it is (and do so reluctantly). I don’t think she is at a point where she needs memory care. Also, to be honest, I doubt I could afford a nice facility. She won’t be eligible for Medicaid as her name is still in deed to our home. I don’t allow anyone to see what is happening to me, but I’m unraveling and don’t know where to turn. I know I can’t leave her. I have to see this through and act as affectionately as I can. However, I am alive and don’t have a life or any hope of one at this time. Her disease has progressed slowly and I know I’m in for a long haul. Don’t get me wrong. I want the best for her. She did give me two children I love dearly. I don’t want her to have a harder time than she has to. The problem is I don’t know where to go from here. Everyone sees me as a pillar of strength. I’m not. I’m crumbling inside.

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Sighman your situation is so difficult and I can't help but respond when I have new ideas.

I don't think it matters what anyone tells you but her doctors, if they say she is fine to be left alone for short periods, then she is fine to be left.

Have you thought about a housekeeper, someone who can come in and clean the house, do laundry, maybe throw a meal into the slow cooker once or twice a month. You would be surprised how much help a twice monthly cleaning can be.

Have you contacted the charities in your area? I volunteer for one and it is not ever based on income for someone to come hang out with your wife. This could give you a couple of breaks a month. If you find the right person your wife would probably not even miss you. Speaking from personal experience with elderly people that had separation anxiety and I found ways to engage with them to give their spouse a worry free break. I have fallen in love with some of them and I will help them when they need me, no charge.

If you have to have an aide come in and it is a minimum, take advantage of the time for you. Go to lunch, go for a walk or anything that helps you relax.

Another thing that I think would ease your mind, your daughters know exactly what their mom is. You are not protecting them from anything about her personality. She raised them and they know, whether they say anything or not, they know what she is. Stop worrying about that, it is okay for people to understand the realities. They are probably trying to protect your feelings by not saying anything.

There are many charitable organizations that can help you and are not based on money. Spend some time calling catholic charities, jewish family services and other social service resources for community services available to help you have some space from this situation.

Remember that you matter and you deserve to have something in your life that doesn't revolve around your wife, even if it was a wonderful marriage it is simply to much for 1 person to deal with 24/7/365.
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Herindaws Dec 2019
Hiya there. Greetings from downunder

I love your advise
Yes there are places about

I currently look solely after lifetime girlfriend who has been diagnosed with early onset dementia

We are both 64

Originally she moved here to buy a unit in my area ....after living. With her sister for 3 years

During the process of buying she had a meltdown. ...she wouldnt come home some nights. Had psychotic episodes ....then started being incontinent

Her family think i may have triggered something but if truth be known she has never lived alone before nor married

Anyway ive done my best taking care of her
Taking her to drs. The works

My question is. She has changed a bit

She has always been lazy and addicted to her mobile and tv

But now she is spiteful
I try and encourage her to keep busy
But she refuses to get out of bed somedays

She knows we /she has appointments or similar but dosent care or if she does takes hours to get ready.

She can be very cunning and lies to me which i get very disappointed about
Im wondering is it really dementia or a psych condition
And why does she shoot down and wear me thin on purpose
I love her dearly. Been friends since primary school
She is bright. Can do her own banking. Use the computer. Shower cook everything else
But hates giving me a hand with household stuff.
My dr told me im not well enuff to care for her but do.
Hope this is making some sense? Gulp
Am i being used like friends who know and see her suggest and i feel... where /how does dementia show its real ugly head

She has tons more stamina then i
If im asleep she goes thru mt private things
She is not the friend i have had for over 55 yrs

Just curious and feeling a tad used at the minute

Merry Christmas
Cheers
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Sighman - first I wanted to say that I am impressed that you have responded to every comment...not necessary, but impressive. LOL

I just read your response to my earlier post about your age.  Yes, you are pretty young  be dealing with this.  I started managing moms care in my mid 40's and now in my mid 50's feel like I have aged substantially from the stress of it all  The first couple of years she would call me at work with the craziest of stories.  Someone was shining lazers into her bedroom and she couldn't get any sleep. Or I just let a man into my house and he gave me a pill to take and I woke up in my bed.  Or there is a gang of kids that are stealing my mail out of my mailbox, etc...  Once you hang up from phone calls like that, it's a bit hard to just go back to work like nothing is wrong...  so I understand your mounting stress.

The doctors that you took her to only saw her for a very short period of time and maybe she was even having a moment of clarity when with them, but I assure you she should not be left alone.  Some of the posters have great ideas about a nanny cam and turning off appliances, separate phone just for her calls... Those things might buy you some time for sure.  Sounds like you're doing many of them. So the type of dementia she has is Alzheimers?  We think my mothers dementia was caused by taking Benadryl every day for years to deal with her allergies.  This type of dementia seems to progress slowly.  She wasn't right back in 2008.  I have had her in assisted living for more than 6 years now.  I met with a doctor who did research on drug linked dementia.  He said don't take anything that turns your brain off...no sleeping pills, no allergy medication like Benadryl, etc.  You can actually google the list of drugs that have been linked to dementia.

I certainly understand the financial struggle.  Your lawyer is correct in that you aren't alone and this is very common.  My mom is in the same boat in that she makes too much to get assistance but not enough to pay for her care.  Right now I supplement what I can and have sold her house and car (neither were paid for) so that she has a small lump of cash to add to her monthly pension to make the assisted living monthly payments.  No one knows how they will go and you can plan all day long and still may never pick the right route to cover your situation.  I'm sure you and your wife never dreamed that you would be dealing with dementia in your 50's.

I just scrolled down and read a response you made about the relationship you had with your wife.  That's horrible that you didn't have a better marriage.  I think when the relationship was bad before the illness, it makes that fact that you now have to care for her feel like salt in a wound. 

Ignore the woman who was shaming you on this post.  This is a safe zone and you can feel anyway you want.

As you can tell, none of us have the answers...we have opinions, suggestions and of course our own sad stories to share.  I hope you find it cathartic just to talk it out with those of us who understand your struggles.  

Please keep us up to date on how you're doing and just like they tell you on an airplane....put your own oxygen mask on first before helping others!  Take care.
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Sighman Dec 2019
Jamesj
Thanks so much for your uplifting post. I appreciate it very much. The doctors didnt see her at a particularly good or clear minded time. If I am correct, she had an fMRI. She seems normal in so many ways. The areas of her brain that are compromised are not in a usual pattern, therefore she can still function on certain levels.
She has always asked others to do things for her. I ask her to do simple things around the house to keep her from being bored. She will start vacuuming and tell me to take over (as she always has). I never wanted conflict around my girls so I just let things slide.
I know she didn’t honour our marriage vows but again, she is the mother of my children and I dont want them to suffer because she is sick. I have a responsibility and I know this. I’m not necessarily the good guy here. I am just a responsible person and a dad that loves his daughters. There are times when I feel like running away but reality is that I can’t. The girls have taken care of her a few times when I’ve had to be out of town for a week or so. That doesn’t happen often. She can be very demanding and the girls have a hard time with that behavior. It is not how I want them to remember their mother.
Thank you for sharing so much with me. I have tried paying a few qualified caregivers a couple of times. Everyone online seems to think it’s nevessary. Even if I’m only gone an hour and a half, I have to pay for four hours. Then, to make matters worse, she is upset and angry when I get home. Last week it cost me almost $200 for being gone a total of 4 hours over a 2 day period. I was gone in 15 and 30 minutes increments on those days.
We have too much income and too many assets to qualify for any help. Yet, on the other hand, I do not have enough to spend a few thousand a month and still prepare for what’s to come. I want to be able to provide a good MC facility or good home care when it is time. She asks me to turn her shower on and off. I know she can do it as Ive watched her when she thought I was asleep. All I can say is that she has always felt she needed people to do for her. Two separate doctors said it’s not likely that she will stop expecting that.
Had we divorced all those years ago when I wanted to leave, someone else would be in my shoes. Perhaps it would
be someone madly in love with her? She gets treated well now and I have figured I’ll be caregiver for most probably another 5-7 years. They say people can go on for twenty years with this disease. I just want everyone to be happy and things to be as normal as they can for as long as they can. The phone calls are still invasive. When I ask her to stop and only call if it’s important, she says okay and calls again! She wants to know where I am every second of every day. I read about others here and many have things far worse than I do. I am grateful for being able to vent here. Thank you again for your non judgmental comments.
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The hardest thing and the best thing I ever did was move my Mom to Memory Care. I have a place that is a "home concept" not a residential home but there are several in the community that look like homes. My husbands family spent some time considering moving their Mom to MC but the decision was made when she fell (unattended) in AL - After skilled nursing, its on to MC. Find an affordable place and put her there. She will be unhappy - maybe for a long time. But the people who care for her and work there know what to do.
Its hard - closing and selling Moms house (the one I grew up in) , her car (she loved!) and distributing her things - but she is perfectly fine where she is. And with people who know how to manage AZ!! And I don't have to worry 24/7 (of course I do - but I don't have to!)
We all understand.....
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Sighman Dec 2019
DrCarol56
NThe doctors don’t think my wife is ready for MC or assisted living. I was hoping to keep our home until it doesn’t matter to her as to where she is.
I have been told that familiar and comfortable surroundings really make it easier on the patient . I can’t say I love her deeply. However, I really do care about her welfare. She gave me two wonderful children. I will never do anything to tarnish my girls image of me. How I treat their mother will tech them what to expect for themselves in their relationships. I suppose it’s selfish of me in as many ways as it is positive.
I love my work. That said, I can transfer a lot of my emotions by channeling them in to productive areas. I also want to be able to leave my girls something should I pass earlier than expected. My heart goes out to you in having to sell the house you grew up in.
What I haven’t been able to explain effectively is that she functions too well to be in a home. We still go out to dinner with friends and have a few over for dinner from time to time. She dresses herself, showers, toilets and all of that. What I see most are the repetitive questions, losing things (like her glasses or a jacket or whatever) and the endless searching for them. She can go to the fridge and get out everything needed for a sandwich. The problem is that she gets confused in putting it all together. She also shadows me or comes in to my office and sits down on the couch and wants to chat while I’m working.
The other day, she walked around our cul de sac and two neighbors brought her home in their golf cart. I have no idea why they picked her up. She can’t go anywhere unseen from the circle and neighbors have been told what’s wrong. I hated telling people (she would be embarrassed knowing that I’ve done this) but I thought caution and extra eyes were more useful than my need for privacy. Thanks for your input. Every bit of information helps me understand a little more than I did.
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Check out the Readers Digest for December 2018, an article called "The Lifesaver on Dad's Computer Screen". This might be something that would work for you!
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Sighman: Wow. Genius idea on that electrician!
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She is NOT ok to be left alone. She is deteriorating in front of you. Respond for the next level of care needed, not the current one. There are rules that let a living spouse keep the house. Go to an elder-care attorney and get it all worked out. Your wife needs activities and watching over more than you think. Take my word for it. Don’t wait for a crisis.
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Sighman Dec 2019
Sandwich42plus As there were so many people saying it was not acceptable to leave her alone, I made emergency appointments with her psychiatrist and neurologist. That, believe me, was not easy to arrange. They both, independently, and then by agreement. felt that she was quite able to be left alone for periods of time at this point. It was explained to us that no two cases of Alzheimers are alike. Some people are unable to function at earlier stages, some function at later stages for years. They said staging was more for the caregiver. She sounds perfectly normal to people who dont know her. She gets lost when trying to follow a conversation when we are out with friends. At home, she knows what not to touch at this time. She knows who everyone in the family is by name. She can’t turn on the TV or the microwave. Power to kitchen is off when I go out anyway. She can’t put things away in the right place and can’t put outfits together. However, she is very aware she has some issues. The doctor told us that there are people in later stage 4 and live alone. The system doesn’t work for everyone. Doctors told us that there is such a varied pattern of timing and brain change. Thank you for you thoughts.
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Hi Sighman -

I'm just going to address the phone issue since I found a solution that works pretty well for me. Big huge caveat this is in regards to my mom , so we're talking a whole different set of dynamics. Plus who knows how long her lasered-in multiple calls phase will last ( pretty long so far! ) Anyhoo, she has been and always is a TREMENDOUS talker, and calls me constantly. So I:

1) Gave her a special ringtone
2) Realized - and this one is tough - that she is going to feel anxious no matter what plus she doesn't remember how often she calls or what she called about. So I limit my phone pickups for her to once or twice a day. These calls are draining but I DO call or pick up regularly on this 1-2 per day schedule which helps me feel less like an arse and her feel like I have not 'abandoned' her. Overall there really is no way to ease her mind if she keeps forgetting she calls..(fully admit I've had some therapy sessions over my mom's feelings and my powerlessness over them )
3) Calls became more incessant so I put my phone on silent
4) I got a second phone! Second number THAT MOM DOES NOT HAVE. Now mom can call to her heart's content and I can keep the ringer off. When I need to wait for a call for an electrician, etc..I can give them that second number. I'm not tied to that first phone and having to hear it constantly ring , knowing what's on the other side of that ring, which is great!
5) Fyi I got an LG flip for my second phone. Very sturdy. Bad part is initial cost: activation fee plus phone overall was $144. After that financial whack it comes to about $6 a month since it's an ol' dumb phone. This was via Verizon who is the carrier for my first phone.

I'm still agitated with the phone barrage and incessant verbal drama but this has really freed up a lot of mental space.

Truly wishing you the best in this difficult situation!
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Sighman Dec 2019
Madisoncuckoo7 I really appreciate your ideas. I think the different ring is a great idea. I doubt she realizes how often she calls. Nevertheless, I can’t deal with much more pressure. Alzheimer’s is a terrible disease. You are looking at some you’ve been with for years and they are complete strangers. There is a blank look about them and it’s hard to believe that there is no one home in a face so familiar.
A second phone is also a good idea. I’m ready to try whatever I can. I just don’t want to miss the one important call where I might be needed. There is a balance to find in order to survive and continue being an effective caregiver. Thanks for your input.
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Sighman - I just finished reading all the posts. It is easy to find solutions when money is not an object, or you live in certain areas of the country. I am not sure what state you are in, but where I am, the resources for assistance are limited. I feel exactly as you do.. I do not have the resources monetarily, and my parents have too much money in pension & mcr to qualify for things - but not enough to pay for everything that is needed... that is why i have to work so hard. My dad sleeps and watches TV- that is all he has wanted to do, and that is all he can do at this point. As a side note- my mom sounds like your wife and I am so sorry!! this may not be appropriate, but SAVE YOURSELF!!
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Sighman Dec 2019
VickieNH Thank you so much for getting it! People keep telling me what I have to do but they aren’t aware of the pitfalls of falling between the cracks. Not enough to hire someone and too much to get any kind of assistance. That is the system and that’s how it works. The ironic thing is people like us pay taxes that pay for other people’s care. I’m glad others are getting help but I still have to help myself and my wife. If I spend now, there wi not be money for a decent MC facility when there are no other options. I wish I could save myself but if I did I’d hate myself. As you might see, many criticize me for leaving her alone for two hours or less. If you read my response to TNtechie you will see that I am doing all I can do. It’s so hard. We are in South Florida and care is expensive. We’ve had our home for 25 years and so the property taxes aren’t as bad as they could be. People keep telling me to sell my home, downsize and put her in a nice MC. When she has passed that will leave me in an awkward place. I will have nothing left to leave my kids and be paying a lot more for a lot less. It seemsime no matter how much I do, it’s never enough. Thanks for understanding, really.
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Sighman - I am currently the sole caretaker of both my Mom and Dad. They are both in their 80's. My Dad has Alzheimer's - in the last stage. I currently live with them in their home so as not to disrupt what he has known for the last 35 years. Over the course of the last 5-6 years (he has had alzheimer's "officially" since 2012), I have noticed that everything is cyclic. I had problems with my dad trying to leave the house as soon as he heard me leave- that is no longer an issue. I have had to develope different methods of dealing with each obstacle. When he would keep flushing the toilet or putting enormous amounts of toilet paper/tissues/ whatever, i had to have two no overflow toilets installed in the two bathrooms that he uses (of course he flooded the entire basement with about an inch of cold fresh water first). It has been almost a year since that, and i have not had a problem with his playing with the toilets since. The trying to leave the house has gone away for the most partas well. I too have two adult daughters that help when I need extra help, but as with you, i do not want them to be a caretaker at this point in their lives. I work full time as well as doing EVERYTHING for both parents and the home. It is A LOT to say the least. My mother does absolutely nothing. The extent of her input is to maybe heat food up for dinner on the days they have leftovers. All she does is berate him for his disease. She has been used to having him do everything for her, and since obviously he can no longer do anything for her or himself, she nags at him. I have the world of respect for my Dad and none for my mother. I bring her/pick her up from dialysis 3 days a week, cook, clean, shop, yard work, snow removal (just had two days of that fun), home repairs - she refuses to even make a phone call to her own doctors... which by the way, she has like 10 of them...and i bring her to all her apts. I stay and do all this out of responsibility too. It is hard and I know i am stretched thin. I so feel for you Sighman - sorry i went on a rant, but I wanted you to know that I understand what you are going through. There is no easy solution. I do agree that you have to figure out what you are comfortable doing. I know I will have no regrets when this part of my life is over. I will know I hung in there until I couldn't and when it comes time to place my dad (which i think will be within the next year), i will be able to do it knowing it is time. I have to say- please get on that lawyer issue right away. My mom, being the way she is, waited until my dad could no longer sign his name, so I will actually be going to court the day after Christmas to obtain guardianship. More money that did not need to be spent, had my Mom had their wills changed just a year earlier.
Hang in there if you can / everyone is different. I am not sure how long she has been calling you all the time, but that will probably stop eventually (to possibly be replaced by a different issue). Again, my Dad has done things for 2-6-8 mths, then it stops. Good luck to you !! I wish you the best and just remember, you can only give so much and you have two daughters that need you to be around too!!
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Sighman Dec 2019
VickieNH I’m so sorry for what you are going through. I understand all too well. You have a heavier load to carry than I do. The good thing is that you understand that I must deal with my responsibility. It would be easier if I felt differently on an emotional level. I try to understand what’s happening to her but I can’t help remembering her self centered ways when she was well. I know she would not be doing this for me. Still, I have to do what I am doing for my own self respect and for my daughters. If Dad jumps ship, It would fall on them. I could use the help but I know they have their own responsibilities. I have been getting a lot of good info and support from most everyone here. Yesterday I ran across one woman who scolded me saying I have excuses for everything and every suggestion. She said she was in some field of psychology. I almost deleted this all based on her. I have a friend who is a practicing psychologist. I sent him her comments. He laughed and said “I hope she was never a cheerleader in high school!”. He went on to tell me to ignore negatives. I only mention this because some of us are reaching out in a kind of desperation. The very last thing we all need is to be knocked down and criticized. Until her post, everyone was helpful or at least kind. Now I’m venting!
I guess what you are saying is what I’m feeling. We have to manage the best way we can and, later, will not regret our loyalty. When I say loyalty, I mean to her, to my girls and to myself and you, to your parents and family. I’d rather be anywhere other than where I am. I’ve interviewed with HomeInstead and a few other places like this. The cost would hurt the long term plan. I know that to have her in a MC that is decent will be expensive. I also know that time will come. People keep telling me how terrible it is for her to be alone for an hour or so while I take care of business. They tell me how anxious and scared she probably is. Well, hey guys. I’m anxious and scared and have a lot on my plate. If someone is not in our position, they really can’t know what we feel like. I appreciate all of the well meant suggestions but being told off by someone who claims to be a professional leaves me to wonder about some professionals. My wife has multiple doctors and is well cared for. She never had any hobbies except for retail therapy. I’ve gotten her adult colouring books and different things her doctors suggested. Nothing interests her. Not much ever has. I was young when we got married. She actually asked me! I hesitated. but went through with it. Too soon, there was a baby and so on. I never wanted my children to come from a broken home. I think I am a masochist. My work was very rewarding and so I devoted myself to it. She was happy as long as the money was there. Once I had forgotten some papers I needed and headed home 15 minutes after leaving for my office. Surprise! She said to me. There was a hunky guy sitting in the family room. She told me the surprise was that she had a personal trainer. I just picked up my papers and left. I never said a word to her but she knew she was walking a thin line. I should have left then. I didn’t. My girls would have been devasted. I had them in private schools and their life was good. Now I see people criticizing me for leaving her alone for an hour or two. I will see it through. I have to. That woman who told me I was wasting peoples time really hit a raw nerve. Now that we’ve both vented to people who understand, I feel better. I wish you the very best with your parents. My girls are not at a stage in their lives where they could do what you’re doing. I see that you also protect your kids. I respect your dedication. I wish I could say more than “hang in there” but you know I can’t and I know we both will.
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There are two _certain_ things with dementia:
(1) it only gets worse; and,
(2) the actions of mid to advanced dementia sufferers are very unpredictable.

My father decided to replace an electrical outlet without turning the power off first. Another time he put 20 lbs of pool chlorine complete with algaecide into the house's fresh water well. When he couldn't find any matches to start a fire in the fireplace, Dad turned on all the stove burners, then added newspapers and kindling to start a fire there. No one in the family saw any risk he would do any of these things prior to them actually happening. One brother still wanted to leave Dad alone in the house occasionally after all of them too.

Many of the comments to your post are from posters who recognize your wife's anxiety and agitation as precursors to more unpredictable and potentially dangerous behavior; that's why we have repeatedly stated your wife needs constant supervision. It's not about whether your wife _wants_ to go to adult day care or not. It's about whether your wife _needs_ to go to adult day care so she has appropriate supervision while you are out of the house.

Do you disable the stove when you leave? Secure your car keys when you are home? Are all the windows in your home on the ground level? Is there a pool or hot tub outside? Are you aware stage 5 ALZ suffers have jumped off balconies? Went swimming fully clothed? Gone out for a walk in snow without a coat? Driven off in the car and disappeared for days?

Until your wife has constant supervision, I urge you to consider a good security and monitor system. Something with a good fire alarm so when she sets something on fire, your house will not burn down. Something with a flood detector so when she overruns a sink or bathtub, you have a chance of preventing the whole house from flooding. If you have any natural gas appliances or fireplaces, you might want gas and co2 detectors too.  Some cameras on the exterior doors so when she decides to walk off looking for you one day you at least know when and what direction she started off in. You might even want to get her a fall detecting GPS enabled device so you would know where to find her, assuming she doesn't take the device off.  One day soon, you may need the security system to wake you from an exhausted sleep because your wife has opened the front door at 3:00am.

I'm sorry, I know this is not what you want to hear. You still believe you are in a land where your wife needs your help cooking or housekeeping because of her incapacities. Because she hasn't scared the crap out of you _yet_, you are discounting the land where her confusion and broken brain together with her mobility lead her to take unpredictable actions. Most of those actions will be merely irritating, but a few may have life and death potential, not just for your wife but maybe for yourself and others too.
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Sighman Dec 2019
TNtechie First, I have every room on Nanny Cam that I can see on my phone. Next, the stove is off at the box when I’m gone. Yes there is a pool but she cannot get to it. If she decides to go outside, the area she can go to has a 6’ fence around it and a camera. It is just an emergency exit. The water is turned off where she can get to it. Rooms where she could get in trouble are locked and I have the keys with me. She can’t get to car starter as I have it with me all of the time. Her meds are in a safe. If she wakes up during the night, an alarm goes off when she gets out of bed. I can hear it. She can’t! I did all of that back when I had paid an agency $27 an hour for care as I had to be gone about 12 hours. When I got home, two hours earlier than expected, the caregiver was asleep in a chair and my wife was wandering around looking for something to do. There were 2 people who came that day. The first one stayed 4 hours and the other one was to be there for 8 hours. When I found her sleeping I sent her home. The agency billed me for the full time. She had obviously been asleep a while as my wife’s meds were still where i had left them in the locked box the caregiver had a key to. I complained to the agency. They said the girl denied being asleep. She said she had just closed her eyes for about 5 minutes. I was home for 15 minutes before I woke her. I wanted to see what would happen. She told me my wife had refused her pills. She never has. She asks for them 20 times a day. Keep in mind, in social situations no one could ever know something was wrong if they didn’t k ow her. They’d think she is just quiet. The only time she is quiet is if we go out to dinner with other people. Conversations are over her head and she knows it. I have done everything I can do at this time. Her doctors think she is fine unsupervised for a few hours during the day. She is what they call high functioning. I’m sorry your Dad got in to so much trouble when alone. I know this disease is unpredictable but every one is different. The day I had the caregivers I didn’t answer my phone as I was in meetings. The only messages she left for me were the same “when will you be home?” Since then, she throws everyone out as if she remembers what that caregiver did. I doubt she does but who knows. Thanks for your input and information.
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This IS my sister in law, who is almost 3 years into an Alzheimer's diagnosis. Early onset at 65. She is fearful when her husband leaves for work as she is left by herself. But he must earn a wage while he's still able! She has destroyed their microwave by cooking a muffin beyond all recognization. Prayers to you....
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Sighman Dec 2019
Llamalover47 I know this can happen. This is why in the hour or two I’m gone, nothing in the kitchen or laundry area work except for the fridge. I had it set up that way by an electrician. Thanks for your input. If you read my response to TNtechie you may get some ideas for your brother. Good luck to him.
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My situation is so different from yours but so similar. It’s my mother. I know completely different from a spouse. However. She is in a memory care unit. Alzheimer’s stage 5/6. I disconnected her phone when she moved in , but mistakingly, left the phone in her room. She had no clue how to use it. Until Monday , when someone at the nursing home told her to press 611. Ok several calls from Verizon, worrying about her safety or mine, has left me at this point after 5 years of dealing with her decline , needing some sort of meds to deal with this. It’s so hard. My mother had no idea what my last name is or my age. Ok. I get it Alzheimer ‘s. I saw her on Thanksgiving. She didn’t know what day it was. Can you possibly, find a way to block her calls?
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In skimming through the previous answers and replies I think that there is way too much emphasis being placed on the phone calls, if that was all it was the solution to not pick up is a simple one. Unfortunately I think that the elephant in the room is that she is clearly NOT okay to be left alone - physically she is fine but her mind is broken to a degree that almost anything is possible, especially if you block her calls and her anxiety ramps up. What is to stop her from calling 911? Going out in search of you? Getting into some kind of dangerous situation while you are gone like forgetting food on the stove and starting a fire or overdosing on medication or attempting something completely nonsensical that nonetheless she feels a need to accomplish? I've seen many loving couples who have admitted they can't manage alone, why are you stubbornly insisting on trying this when you admit your loving relationship died years ago?
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Sighman Dec 2019
cwillie I do not have the funds to hire someone. I have to keep working. We don’t qualify for any kind of aid. She can’t use the stove when no one is there. It is turned off at the box. Meds are all in a safe. As for her feeling the need to accomplish something, that’s not her. She didn’t have that need when she was well. All of her doctors think she can be alone for a few hours. She can’t wander as she’d have to open a lock she can’t reach. Most who meet her think nothing is wrong. She functional fine regarding her person. She even asked for new makeup. I have a nanny cam and can see her in every room. I check it all of the time. I am never more than 10 minutes away in town. I have no choice but to do it alone. Money talks and her co pays. OTC things, Insurance, Special diet for a stomach issue and allergies add up. I have to look at the time she won’t function and will need 24 hour care. The elephant in the room is the cost of care. I can’t find anyone to come in for an hour or two at different times each day. My business schedule is in predictable as to times I must step out. When I do get a friend or someone to come in for an hour she gets rude and tells them to get out. They call and tell me. No one wants to come by anymore. She has always called me a lot. Maybe I am overreacting but I have no options. I’m a. Intelligent person and have explored them all carefully. If I spend money on care now, there won’t be any when she needs it and can’t do anything for herself. We went out to dinner earlier. You’d never know there was something wrong except she can’t read a menu, has no idea of what she wants except for dessert. She starts a conversation and doesn’t know where to go from there. We were with friends and she asked what they thought of what was going on with the war! We had been talking about the primaries. She is not in danger, well cared for and I’m doing all I can do. Thanks for your input and concern for her safety.
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TeleCalm phone or other programmable phone.
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I am just being nosey with this question, but how old are you and your wife?  You mentioned that you need your phone for work/business, so obviously you're still working.  My mother was in her late 60's when officially diagnosed.  I think she was having problems in her early to mid 60's but covered it well and I was too busy with my own family to notice.  There are laws in place to protect the healthy spouse who is still in the home.  You need to contact an elder lawyer and get specifics.  She more than likely still qualifies for Medicaid without making you homeless... 

If you are working and your children have their own families and jobs to  maintain, your only two options are hiring someone to come into the home or place her in a facility.  Only you know what you can manage.  You've got to do something about the phone situation to help with your immediate problem.  Maybe get a burner phone and put a message on it that she can hear when she calls it..."Hi honey, I am at the store and will be home shortly".  On your business phone, hide the number from her or block her calls on it.  Only allow calls from the caretaker you hire.

You don't have to be a pillar of strength Sighman... just do the best you can.  That's all any of us can do.

I think you're feeling guilty because of past feeling of wanting to leave and that really doesn't have anything to do with the tough decisions you're having to make today.  Even if your marriage/relationship was so fantastic that poems were written about it, most people cannot take care of a person with dementia full time while working without lots of help and even then it is challenging.  

If your adult children have spent any time alone with her at all, they are fully aware of the stress of it all and will understand whatever decision you make.  Once you make a decision, you might want to tell your children ahead of time just so they aren't shell shocked when it happens   Remember this is about your wife's safety and wellbeing and your sanity.
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Sighman Dec 2019
jamesj We are in our late fifties. We are not poor and don’t qualify for any kind of assistance. I’ve taken a loss of money by working from home. She made everyone who tried to stay with her miserable. She wanted me home. She has always been a clinger. She has no friends of her own as she has so always been quite self centered. If I spend money on care now, what happens when I have to come up with $5000 a month for a facility. I have met with many people and discussed this. We won’t be homeless but I won’t be able to do what is necessary when she needs care 24/7 if I’m not cautious now. It’s good and well for everyone to suggest getting help in. I’d like nothing better. She is a high functioning Alzheimer’s patient. I know that won’t last. I spoke with an elder attorney today. We are going to meet next week. He said my situation was more common than people realize. We have too much income to get assistance and too little to pay for it and provide for the inevitable. Whatever happens. It’s my responsibility to see that she has nice surroundings and good care when it becomes necessary. The phone calls are going to stop. I got another phone to connect to nanny cam. I can turn it on and watch and ignore her calls. All she wants to know is when will I be home. I understand that and do my best to get there as quickly as I can. I’m just beginning to feel like I need a caregiver. I’m tired of the same quetions 30 times an hour, the calls, the lack of privacy as she bangs on bathroom door if I close it. If I don’t, close it, she comes in and starts talking. I’m starting to think that everyone is worried about the patient but few think of the caregiver. Thank you for your kind thoughts. My adult children want as little to do with her care as possible. They have lives to live, jobs and family. The elder attorney said I’m one of many.
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Sighman, it’s clear you won’t and can’t turn your phone off so the voice message designated for her is your best bet right now. It’s clear you feel a moral obligation to her. It’s clear she can tend to herself TO A POINT for today. Let’s not split hairs, because I’m in the similar boat but no diagnosis yet (mine is highly intelligent which means he’ll manipulate and outsmart the diagnosis until he can’t anymore) so I’m in a holding pattern also till “the time comes” as mine is also healthy body/sickened mind. I’m not sure what my line in the sand is, I keep telling myself I’ll know it when I see it. I’m lying to myself sir, I hope you won’t do that. To further associate with you, mine is not of blood relation... so since the ”true love” isn’t there or never really has been it’s makes it much more difficult and the drive just isn’t there on any healthy level.
You need to ask yourself some questions and be honest.
Do you believe she’s ok mentally? Do you believe that she understands just what a burden she is and does it matter to her? Do you love her enough anymore? Are you resentful that she would never do this much for you? You can’t possibly blame your kids for not wanting to care for her, could you? How much more can you do by yourself?
I ask because you have an intact mind... I don’t anticipate that maintainability at the rate your going, I’m sorry but since your wife has been selfish/self centered her whole life, that seemingly will get magnified as she progresses. She WILL absorb you and it won’t even be intentional this time because she always has but now her brain is dying. You can’t stop it, you can brace yourself and you can learn as much as possible but you are 1 human and can only do so much, long haul or not.
SHE CAN NO LONGER DICTATE HOW THIS WILL GO! Read that again. She will of course choose to stay home, you carrying out her needs and the daily grind, no hired helping because it feels invasive, that’s her default and it’s human nature but is it realistic? No, it’s not:(
Take that one sentence and try to embrace its viability and base all your decisions off of it, because you’re destroying yourself right now and that’s not going to cure her or make you love her enough to make it easier, or probably even matter to her. It May still take YOU a year before you let go and as she and her disease and needs progress, you will realize you’ll no longer be able to care for her... that is a very difficult reality but,
SHE CAN NO LONGER DICTATE HOW THIS WILL GO! When everything comes after that jagged pill gets down your throat it’s going to become more clear how to proceed. My whitest light is with you.
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Sighman Dec 2019
PowerOf3 Wow! You hit every nsil
stfsight in. It’s hard and I know you must be feeling some of the confusion I am feeling. Would she do this for me. No! I know she wouldn’t. She is not a nightingale type of person. She has outsmarted doctors and others with her coverups. She knows what is happening and she knows she is a burden. At the very beginning she let me know what she expected and it’s a lot. When responsibility is there but love isn’t, it’s a bigger battle. If I felt deep love it might be different. I don’t know. That movie The Notebook was not very real. I guess if you’re deeply in love those lucid moments are worth the pain. I can’t address this as it’s not the case. The moral code is there for me but that is it.
It’s hard to say where one will draw a line in the sand. Right now I’m in the sandbox and it gets smaller every day. Your journey is beginning. I went through the same thing in the beginning. It took a while to get a diagnosis. When we finally did get one, she made no effort to learn about the disease. She just made what she expected clear to all. I know she has no control in the way she had at first. However, I still feel controlled. Foolishly, I didn’t start preparing with a 5 year look back. I should have. I don’t know what your situation is, but if it’s related to finances, by all means start planning now. I appreciate your input as so many are worried about her safety. I have done everything I can to insure it. I’m doing all I can do without falling apart to where I become ill. Stress kills. I know that. My sympathy is with you. Don’t make the mistakes I’ve made. Most people worry about the patient until the caregiver becomes a patient from stress. Good luck and thanks for sharing.
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Without reading the 25 previous answers, my honest answer is to put her in a nice AL facility, close-by. Her brain is breaking and it's killing you. She will adjust and have as much or little excitement/entertainment as she desires and you/family can visit often. Stress is a silent killer.
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Sighman Dec 2019
Compassionate5 First, That is very costly. Second, her doctor says I canny force her to do anything st this point. She lives her home and wants to stay there. Stress does kill. The stress of having to pay for care at this point would rob her future care. We do not qualify for anything.
Thak you for your thoughts.
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Sighman - Medicaid has certain funds that are exempt from qualification criteria. One of them is your house.

As a general rule, a home is exempt (that is, it doesn't count toward Medicaid's asset limit and Medicaid does not require it to be sold to pay for long-term care) if all of the following conditions are met:
— It is occupied by the applicant and/or the applicant’s spouse.
— The total equity value is less than $543,000 ($814,000 in some states, including California, New York, and Connecticut), and
— Title must usually be held in the name of the applicant and/or the applicant’s spouse.

There are other exemptions too. Such as your car. These were made so that spouses like you could remain in their homes while spouses like your wife are able to get the care they need.

Please be sure to speak with an elder care attorney before putting your house on the market as you are probably better off keeping the house than cashing out on it.

Also, medicaid has a 5 year look-back on assets. So even if you won’t be putting your wife into full time care now, its worth meeting with an attorney and planning now in case you need to transfer assets, etc.
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Sighman Dec 2019
Trish0812 I had a one hour consultation with an elder care attorney today. From the info I have given to him, he says we fall between the cracks and that it’s more common than I’d believe. I am literally between a rock and a hard spot. I guess the fall might be freeing. I have a meeting with him next week. Thanks for the info you provided. I think it’s too late for a 5 year look back but I have started trying to sort things out. Thanks again for laying it all out for me. I appreciate that.
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My ALZ sister lived with her daughter and went through a couple/three months of a bad patch where she thought her daughter and grandson had moved into HER home instead of it being the other way around (for three years). Each day, she thought they just arrived that day and took over. So she would call me 25 times in a 5-6 hour period (and sometimes call her son and my sister in between calls). She never remembered calling me five minutes before. Several times she called the police to have them removed. If she showed signs of going that direction, my niece would have to unplug the phone (land line).

I also work from home. I would answer the first couple of calls, then skip the next five. Answering the phone didn't help her because she either didn't believe me or she would immediately forget that I said things were exactly as they were supposed to be. So I stopped feeling guilty about not answering. My answering did NOTHING to help the situation.

What probably helped the most was that my iPhone offers a voicemail-to-text option. That way I could briefly look at her message in text and see whether it was truly an emergency or not. Also, if your wife is calling on cell phone, when you set your phone on Do Not Disturb, you can designate a standard text message to be sent. That way she would think she was at least getting a response from you.

The difference is that I knew there was someone in the house with her at all times. We were able to find a young woman from her church affiliation that came three days a week while my niece was at work. It's really a matter of finding the right person who can understand the disease and take your wife's annoyance at them. (Finding an individual rather than through a service is less expensive.)

My sister is now living with me, at least temporarily. She sometimes doesn't recognize me as her sister and asks to call me. So she sometimes thinks I'm not allowing her to call me. That's a tough one!

You're not alone. Glad you reached out. Wishing you and your wife the best.
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Hi i feel and understand yr issues

Just briefly here.....we can have calls diverted to anorher ph no if that is of any help
She possible rings you so much because YOU is all she sees as having in her life ...someone she knows she can rely on and you will be there to pick up the pieces....
She may actually get anxious when your not around

Another theory i thought if she is "on the ball" tell her you are driving and not allowed to ans the phone. ....tell her you will ring her at. A certain time once while your gone ...perhaps say that way you can get back home a lot earlier without interuptions.

Try and get a promise out of her to cease ringing.....so that time on ph to her will get you home earlier....if she rings often explain it will make you super late home....thats if she is capable of understanding that. ..thats what she wants. YOU. why? Because she knows you will oblige. .
Tons of best wishes
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Hire support personnel to lighten your load: housekeeping services, ready to eat meals... and sitter services for your wife so you can do the things you need to do.

I am loathe to say this, but -
take the battery out of her phone when you need to be out (or permanently). Of course, this will only work if she has somebody with her. It seems that is the best option for your sanity.
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Sighman, have you considered hiring a housekeeper? It would help you not have to do 18 hour days.

If she has always just done whatever she wanted and never had any consequences, well, it is unlikely to change now. It unfortunate that you didn't put your foot down when she was younger. She is not going to start worrying about how she impacts you, just give me what I want to avoid the drama. My mom is the same way. Frustrating, but I can hang up or walk away and ignore phone calls, I don't know what I would do if I couldn't.
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could you turn your ringer off when you’re gone? The caregiver can call if there’s an emergency.
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Would it work to change your home number (assuming that she does speed dial) and set up your phone so that the home number calls go to a message that sounds like what you normally would say to her; you could answer some of them and let some go to the message. That would give you some control over the calls.
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Sighman Dec 2019
Partsmom, You just gave me an idea. I think my cell will allow me to send numbers to a recorded message. Perhaps saying hello, i be home soon or something like that might work. I know I sound liked a whiner but I am on such overload and there is no easy way to fix it. Thanks for your idea.
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Sighman, you said: "I don’t want her to have a harder time than she has to."

Are you saying because she has Alzheimer's, she is suffering and you don't want her to have it any harder? No, Sighman. She has Alzheimer's, but YOU, as her caregiver, suffer the disease.

Apparently, it makes no difference to her if you answer the phone or not, because she doesn't remember and will call again. So, don't answer. If she gets agitated, LET HER. She'll forget soon enough.

You have received a lot of good advice on what to do, so I won't repeat them. Remember, you are not a bad husband for having someone else care for your wife. Her needs now exceed what you can provide. So get help.
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Sighman Dec 2019
polarbear, I think I have to re-examine my own motivation. I care what happens to her and I care about her but I don’t feel the kind of love that makes dreams. I should have left years ago. I didn’t and you don’t walk away when someone is sick. If I had left she might be with someone who is emotionally dedicated. I’m responsability driven. I also do not want my daughters to become caregivers and my absence might force that. This is not what they want. They can’t deal with it. I shouldn’t say can’t as one daughter does help when I have to go out of town for work. I just have a time limit on me when she stays with her mom.The other daughter offers minimal help. The phone calls are just going to be ignored. I don’t know if she knows she keeps calling? Thank you for your input.
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I feel your pain. My husband was calling me anything up to 17 times a day plus our son. I have now had the mobile disconnected. It has made his agitation much better
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Sighman Dec 2019
PandabearAUS I can know the feeling well. The problem is that I can’t disconnect my cell. I need it for business.
I just don’t want to not answer when there is an emergency. Getting so
rome to stay with her would cost $1000 a month for part time help. I’m trying to keep finances set so that when she absolutely needs full time care I can step up to it. Working from home is costing me more for a multitude of reasons. Things don’t move as quickly when your employees have to adapt to working from home. It’s complicated. Thanks for sharing your experiences with me. I’m grateful to everyone in this group.
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Stage 5? I don't think she is that far along, especially since she can still use the phone. You have a long way to go yet on this journey. Time to see that attorney to plan for the care your wife will need and you can continue with your business.

No more delaying.
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Sighman Dec 2019
Gladimhere sounds like you are the supreme optimist. Using the phone only means looking at my picture and putting her finger on a green dot. She does that well. She is very confused and they do say stage 5 is where she is at this time. I know there’s a long way to go and frankly, that terrifies me.
She is no longer able to fool people. They know something is wrong, just not exactly what. I can’t see much of a life ahead but she knew she had Alzheimer’s before it got this bad. She knew this but said she wanted to keep going no matter what happened to her. I’m sure she knew she’d need care but knowing her, I doubt she’d care about being a problem for care options. As I’ve said, I’m in it for the long haul. I could never respect myself if I walked away. It’s one of those damned if you do and damned if you don’t! That says it well. Thanks for your input.
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Your commitment to taking care of your wife at home is admirable, in some ways. But I think that her behavior in calling you repeatedly is evidence that she is not "okay to be left alone for several hours." She's disturbing you, and she's probably calling because she's anxious or scared or bored. None of those are "okay."
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Sighman Dec 2019
Rosered6 I know she’s bored. She has always been like that and pre Alzheimer’s, she would call me and call me. She was never one to make her own friends so she just wanted to go everywhere I went. Now, she just sits on the sofa and watches TV. I doubt she understands what she’s watching but even when I’m home she wants it on. I’m only gone for an hour to several hours. Most of the time I’m home. I have to go out at different times and can’t get someone to commit for an hour or two at different times. I can’t set times to come and go. My work does not let me do that.
I appreciate what you are saying but I can only do what I’m able to do. Cooking, cleaning, washing the clothes, doctor appointments and my business keep me on the go 18 hours a day. Thanks for you thoughts. I listen to all input and suggestions and am grateful for everyone here.
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Boy, this is a tough situation. I feel for you!! You've been a very good person by taking care of her, though it's been hard and you wish you'd left previously. Oh boy.

Now, seriously, you have to do something when you are out about those ridiculous phone calls. IF there is an emergency, hopefully she'd call 911. You have to block her calls and maybe to check back on her, you could call every so often, like once an hour to see if everything is OK.

She will not want to leave the home. OK. BUT since she can no longer take care of herself, it is no longer her choice. You have to do what's right for you. This situation seems to me to be spiraling down and down and you need to put your foot down and get some help! She doesn't have to like it but you can not do all this by yourself. It is TOO much.
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Sighman Dec 2019
againx100 Yes, I wish I had left. Maybe she would be with someone else and I wouldn’t be looking at my life in, as I heard a song say, “in the rear view mirror”. Problem is, I’m here and I have to do what is right to live with myself. She had to know she is causing me to do everything. I think she does and doesn’t care. I take my dog for a long walk every night. By the 3rd or 4th call, I answer only in case it’s an emergency. It never is but you never know. Thanks for your thoughts.
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Sighman, I agree with Artist Daughter, you are talking yourself into circles and that is a normal stage to go through as a care giver. You are also operating in FOG, Fear, Obligation and Guilt.

You are shooting down each suggestion as it comes, except contacting and Elder Care Attorney. This is classic FOG.

The many calls from your wife are a sign of anxiety, have you talked to her doctor about them? There are some medications that can help with that. Otherwise, block her calls, if it is an emergency, she can call 911.

The many calls are also an indicator that she should not be left alone. She cannot cope with it any more. She may appear to be physically safe, but mentally she cannot manage.

So now the options are, she has someone stay with her, she goes to a day program or you look at residential care for her.

It does not matter if she does not want someone in the house. It is not about her wants, it is her safety that needs to be addressed. You can try to disguise the helper as a housekeeper, to help you with chores and meal prep. It will be harder for her to accept as from your words, she is someone who has chosen to isolate herself from the world. You may have to stick around for part of the first few visits, then pop out to run a errand.

Memory Care is for those whose minds are broken, but bodies intact. If you place her in residential care, it does not mean you will no longer walk the dog together, or out for dinner with friends etc. It is not a prison, you are more than welcome to take her on outings.

There is no doubt that caring for an elder with dementia is hard, it is expensive, it can drive wedges in families and you may lose friends and your own health. You need to do everything you can now to protect your own health and wellbeing, while making sure she has the care she needs.
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