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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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Have you considered the fact that whether you think your wife needs to be in residential care or not, YOU may need her to be?

Functioning as well as she does, she might be eligible for Assisted Living, and that in turn may be less expensive than the costs you were considering.

Take some time to address what your feelings are about where YOUR life is. You are fortunate enough to have children who love you, and deserve a more accessible dad. You’ve paid your dues.

You may even be surprised that your wife does even better in residential care than at home.

Consider all your options. It may be time.
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You have all my sympathy. Changing phone numbers is a trial, but could you set up a new ‘business’ number, so that she calls the old number and just leaves a message? Can you open up to the ‘everyone’ who sees you as a pillar of strength, and tell them what’s really going on? Best wishes, Margaret
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Shut off your phone when you go out & your problem will be solved. I suggest you contact an Elder Care attorney who can advise you about Medicaid and long term care available for your wife; just because she has a home does not mean she can't or won't qualify for funds. If not, you can always consider selling the home, downsizing, getting enough cash in hand to place her AND get a nice place for yourself.

A person with dementia or Alzheimer's doesn't have to be in the end stage of the disease to be considered 'ready' for Memory Care. My mother has moderate dementia & has been in Memory Care since May; and in Assisted Living for 5 years prior to that.

Caring for a person with the issues your wife is experiencing becomes TOO MUCH after a while. You are only human and entitled to a life of your own. Your wife is also entitled to get 24/7 care by people who are trained in dementia care and know how to deal with her. MCs have activities specifically designed towards people who suffer from the various brain diseases. 3 hot meals a day and 3 snacks. Outings to various places like ball games and museums.

Don't immediately brush off the thought of a Memory Care or Skilled Nursing community for your wife before you get proper counsel on the matter. Dementia will normally reach a point where it becomes literally impossible for them to be cared for at home ANYWAY, so the sooner you look into your options the better.

This does not make you a 'bad' husband. It makes you a husband who's reached the end of his care-giving rope, my friend. I work as a front desk receptionist in a Memory Care community and I see men every day who come in to visit their wives who they had to place here. One gentleman comes twice a day. It's a win-win situation because they BOTH have lives now, versus neither of them.

Many of us come off as 'pillars of strength' but are crumbling inside. Trouble is, we've spent too long thinking and worrying about others and forgetting about ourselves! Just b/c your wife has a disease does not mean you get to neglect yourself. Get busy looking into what changes can be made to make YOUR life easier!

Best of luck!
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Sighman Dec 2019
lealonnie1 I will be contacting an Elder care attorney. I should have done this a while back but I had some major business issues I had to, had to deal with.
Also, I need my phone on for business. I have a very demanding workload and moved my office to my home so I could care for her. Downsizing is on the agenda. I’m getting the house ready to put on the market as soon as possible. I don’t think she is at the point where she would go to a MC facility. She doesn’t realize there’s anything wrong with her except for being forgetful. She still bathes, toilets and dresses herself. She likes to eat and loves sweets. She watches TV or sleeps all day. I take her to appointments with doctors, I take her shopping when I go for groceries. She is a problem but she likes going out anywhere so I take her along. I can still take her out to dinner and to the dog park with our loving mutt! I will take her for a walk along the lake nearby and try to be as nice as I can. As I said, I should have left years ago but I didn’t. Now, I can’t because it would be just plain wrong. She has always been on the selfish side and expects to be cared for. I’m doing all I can but the future scares me. She wants to be with me every second of every day. I know she can’t help repeating the same things and I can’t help getting frustrated and annoyed. Our adult daughters help some but it’s not something they’re compelled to do. They have their lives and I understand. If this was that movie where the man reads from a diary and stays alongside his wife through her Alzheimer’s journey, that would be
the perfect solution in a perfect world. I have stayed through obligation and the need to be a decent human being. However, there is nothing romantic about Alzheimers, my life or my life with the woman I married a long time ago. Like I said in my cry here for help, I’m in it for the long haul. At the same time, I’m lost and feel very much alone. I appreciate this community very much and thank you for your suggestions, all very welcome.
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You don't have to sell your home for her to get assistance, it might be worth your time to go to Medicaid and find out if or how she qualifies.

Honestly, I would block her calls when you leave the house and need a break. You matter in this situation as well and you need a break, period.
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Sighman Dec 2019
Isthisteallyreal is exactly how I feel. I know she does not qualify for Medicaid now. That could change but I’m not expecting it to at this time. Blocking her calls could be a problem when she is alone. I will however try doing it when someone is with her. Thanks for the encouragement and telling me that I matter!
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Contact your Area Agency on Aging and see what services your wife qualifies to receive. Like you, I thought my mother would not qualify for anything because she owned property and then a shared the funds from the sell of that property with my father. It turns out in my area there are programs only income and need based and some (like adult day care) are only need based. While my father lived in MC and their shared funds were used to pay for his MC, my mother could quality for community Medicaid which offers in home care giving and housekeeping hours and a stipend for AL or MC. As Dad's guardian and Mom's POA I would need to agree to allow recovery of the Medicaid expenditures from the shared funds only after both parents died.

Adult day care could extend the time your wife can remain in the home and give you several hours each weekday to attend to your own concerns, but I also recommend you begin looking at MC's because sooner or later the day will come when she will need to be placed for 24/7 supervision and care.

I also recommend you set your cell phone to block your wife's number when you need to meet with others or attend to business details. Most cell phones allow you to setup a personal vm message for blocked calls by number. If you wife still has reading comprehension, you might want to try write her a note when you leave stating in general where you will be and when you will return, along with who is staying with her.
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Sighman Dec 2019
TNtechie You make some good suggestions. I hadn’t thought about contracting area agency on aging. As far as daycare goes, she would never go. She still goes out to dinner with me and a few couples we know well. She knows enough to keep quiet during conversations. I don’t think she is following what’s being said but she seems to know that, I think? Taking her phone or blocking her calls wouldn’t work. She does need a phone if I’m gone for a few hours. As far as blocking calls, there could be an emergency. I really don’t have a lot of help. My wife was never one to get close to people and have longtime girlfriends. Our daughters aren’t committed on any regular basis. I think they want to pretend it’s not happening. I wish I could pretend it wasn’t. Thanks for your advice. All is welcome and appreciated.
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First, the home is not considered in the assets when it comes to Medicaid. You will be considered the Community spouse. Assets will be split with your wife's part being spent down.

Really, a Dementia patient should not be left alone. You never know what they will do. Think of her as a small child, would u leave them alone.
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Sighman Dec 2019
JoAnn29, thanks for the info regarding the house. As far as leaving her alone for a little while, she will either sleep or sit in front of the TV. Sometimes she seems almost normal but can’t or won’t do anything to help herself. My daughters help by staying with her when I have to go out of town. Other than that, it’s hard to get them to commit to any kind of schedule. One daughter works from home and can work from anywhere. The other daughter is not able to cope with the situation and has her own problems to overcome. The fact is, I am pretty much in this alone. I would not leave her unsupervised if I thought that it was unsafe. My options are very limited as selling my business is not one of them, at least, not now. Money seems to evaporate with all of her needs. If you worked the numbers it would appear that we are well to do. Sadly, the burdens of her care, meds. Insurances, optical, dental, disposable underwear, foods and everything else are eroding the reserves. It’s a balancing act and I commend all the people who are caregivers.
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Good answers here already. I understand about the constant phone calls. My mom did that. She had been a telephone operator, so the phone was basically attached to her head. When I moved her to assisted living I thought the calls would continue. They stopped entirely. She forgot how to use a phone! And she has other things to do at her assisted living, so she never really thinks to call me, except when she has a UTI and gets completely confused, refuses her medication, and bath. Then she has the care givers call me. You most certainly need to have some alone time to finish your thoughts, get work done, and oh, maybe relax once in a while. Maybe check on medicaid and the cost of assisted living, or at least adult day care. I know reasons for not doing those things are in your head, but continuing as you are will not make things better. Perhaps just beginning to change the situation will make a difference in how you feel. i hope you find something that works.
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Sighman Dec 2019
ArtistDaughter it sounds like you have a way to lose yourself. I’m just joking but if you are an artist that is a great escape. Almost three years ago I was given a really nice set of water colours, several pads of paper, brushes etc. Can you believe I haven’t had enough time to even start a project, let alone finish it. She will come in to my office, plant herself on the sofa and ask me “what day” it is over and over. I will be happy when she forgets how to use the phone. I never did the 5 year look back and so Medicaid may be an issue. I guess I had my head in the sand and for all it’s worth, the reality of it all is just starting to hit me. Thanks for your input and encouragement. I need all I can get.
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I would get a consult with an Elder Law attorney well versed in Medicaid and other programs your state may offer for AL, MC, etc. Some states do offer AL or MC for those who require it by doctor's prescription and who qualify financially. Often the house is not a factor, if the qualifying party is married and nonapplying party lives there. Don't assume anything about qualifying, unless, you get it confirmed. I'd likely get two expert opinions on it.

When people with dementia repeatedly do and say things, it's likely because they forget they just did it. So, there is no way to convince her to stop. She may get tired and stop on her own or the phone could be removed from her access. It might help, if there is someone with her to tell her, the reason you are not answering her call is because you are driving and it's not safe to answer the phone when you drive. Of course, they will need to repeat this explanation over and over. She will likely do other things that are equally frustrating and exhausting. And, she will need to accept help from someone other than you. It's not feasible for one person 24/7. It's likely she will start repeating the same statements over and over too. My LO would say the same sentence or ask the same question 100 times in one hour. There is no real way to prevent this.

You can read online on sites like this one about how a spouse may care for a person with dementia in the home and all that it entails. I'd also read about the progression and what that will mean with regard to repeating, mobility, sleep disruption, incontinence, pacing, wandering, etc. It's a lot to consider. It's really about the reality of what level of care she needs and will need as she progresses. The strength and bravery of the caregiver is not really at issue. To me, it's more of practical thing.
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Sighman Dec 2019
Sunnygirl1 is a good name for you. You combine logic and your experience in a very helpful way. I find myself snapping at her when she repeats the same thing. I feel very bad about reacting but I am frustrated and don’t see life in a positive way. I plan to see an Elder Law attorney, I just need to be able to get away for enough time. I know she can’t help repeating the same thing but I can’t help being frustrated and snapping at her, then feeling terrible. I need to spend more time looking for tips online. It’s just hard. I feed her healthy meals, do everything she needs except to givein to her demand for constant attention. Thanks for your response to my cry for help. I appreciate it.
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AnnReid, I understand what you are saying but my wife would never go to assisted living. She loves our home. For the most part, she is fine with her life. I don’t think she realizes what is going on as far as the Alzheimer’s is concerned
. She has everything done for her from meals, taken to doctor appointments (which she loves), taken out to dinner, taken for walks by a lake, shopping etc. Our girls are adults and I am very accessible. They are not. I guess I have to wait for the time my wife must have professional care. She would not accept going now. In the meanwhile, I’m stuck and have to be responsible. I wish things were different. No one seems to realize what a heavy load I carry. The daughters don’t. One will jump in for a couple of weeks here and there if I have to go out of town on business. The other daughter avoids helping but that’s because she has some emotional issues not related to what’s going on with myself and my wife.
Getting help from our girls on a scheduled basis has been tried. I’ve asked but they don’t follow through. I love my kids and don’t want to stress them with demands. They have their own lives to live. Thank you for your encouragement. I really appreciate it.



Ydjc
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ArtistDaughter Dec 2019
I think you are talking yourself in circles. I did that too. I would tell myself Mom couldn't go to assisted living because she didn't want to. I was going crazy dealing with the care givers, my job, her house, my house, cooking for us, walking and taking care of a sick dog, getting groceries, doctor appointments, and trying to keep up with my art career. Oh, and my husband kind of wanted some attention. What would fix it? Assisted living. But she didn't want to go and they wouldn't let her dog go with her. But I was going crazy. Then the dog died. Really really sad, but one excuse was gone. And the dog had been her anchor. Mom went down hill fast. Two months later I moved my mom to assisted living. Not easy. Really emotional. And it took a lot of time and physical effort to get it done. It actually is an option for you. I suggest you at least look into it.
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My father has vascular dementia which was diagnosed in 2013. He has declined a lot now and he used to call me on my mobile over and over again until i answered. He would call during the working day for silly things like he needs fizzy drink or cigarettes. He would call to tell me he thinks he is going to die. I got to the stage where i just didn't answer my phone. He couldn't leave a message. He kept calling and calling. It got the the stage where i had to keep my phone on silent and in my pocket so i couldn't see his number coming up on the screen. It annoyed me everytime i saw it. I have never had a good relationship with him. I live with him still but i have my own space. He doesn't call anyone anymore in fact he has forgotten how to use his phone and for a few months now he hasn't called. I found his phone a couple of days ago whilst clearing out some of his terrible hoard. He has been in hospital for a few days following a fall. I took the opportunity to clear out. When i found his phone it was switched off and battery had died. I took it away so now he doesn't have it and probably doesn't eveb remember having it. I'm safe for now until he asks for it and if he does ever ask i will just say i don't know where it is. Where did you last put it. Off course he wont know but why should i know. He is a very difficult man and will be angry when he gets back to discover i have cleared out a lot but so be it. He has no capacity now to be in control or make decisions or demands. He won't go into care either even though he now needs 24 hours care. He is refusing big time. Says he will never go in care. He wants to die at home. He is 83 and i expect time is short now. He is advanced stage i would say but not quite sure how they can tell at what stage he is at. There are apparently 7 stages to dementia. His is vascular dementia. Good luck with your Mrs. Hope the calls will die down.
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Take your business phone number off her list of contacts.

And stop thinking you are the only person who can make sure she receives the best care. You say things don't go well when there are hired caregivers. You call this going well, when you are the caregiver? There will be teething troubles, and there will always be good and bad days, but what you have to adjust to is the new concept of "it's okay not to be okay."

E.g.: your wife wants to know where you are and repeats the question every fifteen seconds because she doesn't have your number on her phone. She is anxious and agitated. It takes time to reassure and then redirect her, and it takes each new caregiver some time to get into her routine in order to do that, and when you return home you find that there has been a bit of an emotional and behavioural rollercoaster going on for the last few hours. So it isn't rosy - but it's okay. Your wife is fine. No harm has come to her.

Learn to be off-duty sometimes.
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Adult day care. She needs something to keep her occupied when you're not around. ADC,she'll get fed, entertained,conversation with others, and outings.
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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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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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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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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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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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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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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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could you turn your ringer off when you’re gone? The caregiver can call if there’s an emergency.
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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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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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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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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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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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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, 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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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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TeleCalm phone or other programmable phone.
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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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