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Going crazy
Internal Administrator
Posted: Tuesday, January 17, 2012 4:05 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: btucson

I log on to this message board hoping to connect with other wives/husbands/caregivers expressing what they honestly feel about this horrible disease. Doesn't anybody else want to just SCREAM! I would like to hear from some people who are going crazy trying to deal with making their spouse shower, having to beat them to the bathroom each a.m. to hide their dirty clothes so they have to wear something else, dealing with them not remembering that they talked their daughter when she called on Fathers' Day. Would like to hear from someone else who wishes their spouse had cancer rather than this awful disease. At least a battle can be fought against cancer and quite often the battle is won. This disease is a hopeless.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: shearbear

I so sympathize with you. Having to phone 911 twice last week, first time my husband threatened to kill me, second time was he was convinced I have a lover, brought out a axe and told me when he arrives he will chop his head off, wears the same clothes for a week, even to bed, until I tell him it is time to change his clothes and take a shower and I am told he took a shower that day/and to mind my own business. He screams at me and hates me most times and another trip to his doctor to see what will work to calm him down and I am going to doctor once or twice a month. My husband threatens daily he is taking all of our money, leaving me homeless, all because I suggest he shave, or it is time for haircut, time to bathe, time to eat, time for medication. Since my husband is incapable of doing the things he use to, and now I do them, I am called a big shot, a know it all, a bitch, and since he feels I am having a affair, I am called a slut, a whore, and it never ends. He beats me down when he sees I am enjoying any part of my life. At present, I feel very suicidal..as I wonder how much longer can I take this miserable life. The Sheriff dept pretty much told me that they can't do much anymore and it is not their job to come out on domestic dispute, even if he threatens my life, he has Alzheimer's and that I need to phone Adult Protective Services and to see a Elder Care Lawyer. Unless, he physically does harm to me...don't call them.
Many people tell me it is time to place him in a home and I tell them it will wipe out my retirement and I don't cherish going back to work at 60 years old. So, that is not an option. I can't live on zero dollars a month...and to work at walmart part time won't pay my bills. AND dh tells me he will not go into a nursing home, he will go live with his sister, who by the way, encourages him I have a lover and tells him to come live with her, and he is entitled to take all the money, he earned it (not true). His sister, beat up her late husband and family had to step in, to make sure she was no longer care-giver. Even though my husband is mean to me, it is his Alzheimer's ..not him, I would never allow him to live with his evil sister, nor would the family. Yes, to some who are afflicted by this disease, it only brings grief and heartache to the care-giver, and some days I wonder how I am going to make it through another day. My husband cannot be left alone no more, and I am in the process to find a MALE care-giver, which seems right now a impossible task. My husband said if I bring a care-giver into house he is throwing their arse out...so whoever I find, it will be done in baby steps..and be introduced as a friend. My husband use to be a loving, caring, gentle man and he now is a mean, hateful, grouchy man. He threatens to take his own life and I use to beg him not to, now ..I don't say a word. Sad but true. I have no life, it centers around him. I look forward to the day, God calls him home.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: Starling

Of course everyone who is at the stage of caregiving you are at wants to SCREAM. And those of us who used to be there understands and remembers those days.

It is OK to vent. All of us need to vent some of the time. This is a safe place to do it.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: sans espoir

Hello, btuscon,

Before reading your post I had posted regarding some of what you had mentioned in the early onset topic.

I tried to get it to copy here but I guess copy cannot move from one topic to another.

Anyway. I feel for you and along with you.

Your conclusion said: "this disease is hopeless" and that is what my screen name means in French. "Without hope".
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: Amy Ann

I hate it! I hate knowing that if he smells it's my fault. I hate doing everything. But I am not without hope because there are some good moments too and when I think of loosing this man who is now my husband I can barely stand up. So I guess there is still something there that is precious. I'm going to do the best I can with it since I have absolutely no choice. Which makes me want to scream "it's not fair.". Cause it isn't.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: sans espoir

"wears the same clothes for a week, even to bed, until I tell him it is time to change his clothes and take a shower and I am told he took a shower that day/ Since my husband is incapable of doing the things he use to, and now I do them, I am called a big shot, a know it all, a bitch/ He beats me down when he sees I am enjoying any part of my life"- from shearbear.

As a new poster, I am just absorbing what I read here. I didn't mean to be curt when I responded to the op here, it was just that when I saw her post I had just finished posting on the "under 65" thread and was exhausted.

Some of what I read causes me to just about gasp and the words above, from shearbear, did that.

Is there ever any gratitude? I spend so much time working on his medical issues, his legal issues- maybe just a simple expression of appreciation?

This is in addition to the finances (so to speak) the shopping, the cooking, the cleaning (again, so to speak).

But it seems that the more I do, not only do I not get any respect, I get hostility. If I say something, something factual not emotional, he'll say "the problem with you is you think you know everything". But if the doc or the lawyer says the same thing, well, then there is something to it- and in their offices HE TAKES ON A TOTALLY DIFFERENT PERSONALITY!

I just learned that not only can I not show that I am upset, frustrated, tired, etc- I now understand that I can't really show any happiness or excitement either. If I do so he gives me a look like I am an imbecile.

The showering, the shaving, the haircuts...Even if he truly believes he did shower that day, I ask myself what does he see when he looks in the mirror, does he think people freshly showered and shaved, with washed hair and laundered clothes look like that? It's hot and no matter how many times a day he uses the strongest ap/deodorant I could find, well, I don't even know what word to use for the "odor".

Posters have said things get better. How? When?

The neuropsychologist and neurologist say there will be further decline only; even the functional evaluation says no improvement is possible.

I admire those who have hope and express love. I can remember the exact moment I lost hope.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: arteche

I have to steal his clothes all the time, he would wear them forever, bathing, HA,(going on 6 months),he has gone 8, brush his teeth?, forget it. He refuses to see the barber, I have never seen his beard this long, ever. I should get stocks in Frebrez.

I have said just recently that alz is cancer of the brain with out the pain.

And yes I'm waiting for the day that the Good Lord takes him home. I will miss him dearly but the man I married not the mn I live now.

God, give us the strength to carry on.

His sister comes tomorrow for his 25th birthday and I didn't have the heart to tell her how bad he is now. She wants to take us out for dinner, i'm hoping she could talk him into it. He sleeps about 17 hours a day and besides all this he willnot go to a Dr Red Face Mad
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: Cathy J. M.

Most of us feel like screaming once in a while. If you feel that way on and on, though -- and venting here doesn't help -- then do something to change things! Study caregiving skills and solutions to problems, hire in-home help, get therapy -- I'd say those are the top three things that can get us through the toughest periods and into a much better place.

I've had periods of crying, screaming and complaining -- some very tough periods -- but in the past two years most months have been really good. Things get awful, then get much much better.

I hope that knowing it's possible for things to get really good will give you some hope.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: RevSasha

Just keep watching the posts...you'll see plenty that express the anger, frustration and craziness of this dreadful disease. We also try to share our good experiences and lift each other up with what hope we may have. When we were first diagnosed I started reading books and watching videos. All the caregiver's portrayed were soooooooo patient and soothing, never cracked under pressure...I hated it knowing that I did not possess that kind of patience. I've used this site many times to vent and scream. Welcome to a safe place, we are all with you. Blessings.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: sans espoir

quote:
Do whatever it takes for you, personally, to create a positive vision of your future with your spouse.


Thank you so much. I too, am going to an Elder Care Lawyer.

There is no positive future for us. We had planned a separation, years ago, and now he has just forgotten this!

I want him to be safe and secure, and will do my best to have this happen. As recently as January he asked "when are you planning to go to _____? When we talked about it in March or so, he told me I was crazy and that I would never get there. Why? I think because he really does not care what happens to me but I am going to do my best for him and also do my best to find my freedom.

It is not that I want another man or another relationship. I just want to be free and who does not want to be free?

JAB, especially as a new poster I will take your advice. I don't think anything goes on his mind except whatever passes through at the moment.

His hostility toward me; very quick, if I am not on my game, is more than exhausting. I did nothing to deserve this.

Cathy, it is not clicking in. The love has been extinguished. Maybe I am not as compassionate or caring as others here. I may have 25+ years to live and I don't want to live them like the last few years have been.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: JAB

Hi, Sans. All of our members are free to read and post on any of our forums. You should be aware, however, that the "Under 65" forum is primarily for our members who actually have early-onset dementia themselves.

Things get better when we learn to try to understand what is going on in our loved ones' minds, and adjust our expectations accordingly. Some call it "learning to speak Alzheimer's." If you haven't read Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience", that's a very good place to start:
http://alzheimers.boomja.com/A...xperience-59731.html

I recommended Jolene Brackey's book, "Creating Moments of Joy", on your other thread. Also, check out Naomi Feil's "validation therapy":
http://www.ec-online.net/commu...fficultbehaviors.htm
http://www.vfvalidation.org
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: JAB

quote:
Many people tell me it is time to place him in a home and I tell them it will wipe out my retirement and I don't cherish going back to work at 60 years old.

Shearbear, you need to spend some serious time with an elder law attorney who has plenty of experience dealing with Medicaid issues. There are many ways to maximize your share of the assets while making your husband eligible for Medicaid, to pay for a nursing home.

You can look for an elder law specialist at:
http://www.elderlawanswers.com
http://www.naela.org/MemberDirectory/
http://www.nelf.org/
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by sans espoir:
I just want to be free and who does not want to be free?



Remember you are free to choose -- moment to moment how to respond, and where to place your attention. And in a larger sense, you're free to choose whether or not to be the primary caregiver for this man -- and if not, how to hand this over to others. You're more free now than you may realize.

A lot of cognitive therapy is learning to say "I choose to..." instead of "I have to...." or "I can't...." Makes a big difference! If you only have time and money for short-term therapy, cognitive therapy is probably your best bet for quick results. There are also helpful books; I like "The Now Habit" -- just right for me since I tend to be a procrastinating perfectionist.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by sans espoir:


Posters have said things get better. How? When?

The neuropsychologist and neurologist say there will be further decline only; even the functional evaluation says no improvement is possible.



I'm not the only one who's reported positive improvements in a loved one's daily functioning, overall attitude and state of being, and in the relationship. My partner has been through the same kind of behavior and attitude that troubles you -- ingratitude, hostility, flareups of anger, etc. And she's also been through periods where she hallucinated, had paranoid delusions, and had "catastrophic reactions" (threats of running away, violence, absolute fury). There was a point about 1.5 years ago when she couldn't remember to pee once she was sitting on the toilet, could only scrawl (not write) and couldn't play a word game.

Yet now she's considerate, cooperative, empathic, can play the word game just fine, remembers how to do things she didn't know how to do a year ago, etc. I could go on and on with more examples of improvements.

Has there also been some decline? Yes, I think so, in short term memory. Sometimes she wakes up disoriented or suddenly gets afraid that I'll "throw her away." But these episodes are brief and it's easy to orient her or reassure her. Overall, we both agree that we have a great life together.

I've had a lot of help in helping her through the tough times -- a caring paid caregiver most weekdays, a friend who listens without judgment, a grown daughter who seems to know intuitively how to relate to my partner (who helped raise her) -- and perhaps three dozen books on Alzheimer's caregiving, activities, spiritual care etc. And terrific brain specialists. And a supportive extended family, church and many friends.

With all these advantages I've still known some moments of despair -- but I do want you to know that for the person with Alzheimer's and for the spouse / partner, it does NOT have to be all bad or a continual downhill decline.

Part of it is just deciding, asap, that as the healthier person, the primary caregiver, you WILL make this a positive experience. There's a basic decision that clicks in.

The most encouraging books I read are "I'm Still Here," by John Zeisel, and "Learning to Speak Alzheimer's." "Inside Alzheimer's" is also good, and I also recommend "The Selfish Pig's Guide to Caring."

I did read the 36 Hour Day and sometimes consult it for tips on handling a specific situation, but I found it rather depressing the first time I read it -- whereas the ones I listed above helped me create a positive vision of what's possible.

Do whatever it takes for you, personally, to create a positive vision of your future with your spouse.

If you keep on doing what makes you both miserable, the situation won't get better on its own. This may be obvious to you -- just want to make it clear that you have to keep learning and trying new things to find what makes it better.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: JAB

quote:
I did nothing to deserve this.

Neither did he.

Try to remember that. You must not take the disease personally, and that includes attributing conscious, deliberate intentions on his part when it's the dementia talking. Perhaps it won't hurt as much if you can do that.

We are not all cut out to be hands-on caregivers ... especially if the marriage wasn't good to begin with.

If you are thinking about a legal separation or divorce, I would encourage you to talk with a divorce lawyer as well as an elder law lawyer. They sometimes have very different opinions on the best way to ensure your financial security while also ensuring your husband's safety and well-being.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: Cathy J. M.

I'm sure you know that it's just a matter of time -- unpredictable too -- that he'll need someone with him all day. Do you have an accurate, professional evaluation of that right now? You don't need a huge crisis on top of what you're already dealing with.

Is your husband eligible for disability? That could help with the finances. There are income-scaled day centers, and a private-pay in-home caregiver may also be a solution (for more personalized activities). Both would be deductible as medical expenses as long as a doctor says he needs 24/7 care. It's a good idea to think about this stuff in advance, since once it hits, you're in a real crunch -- researching solutions but also having to stay with him all the time till you can find someone else.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: btucson

Thank you for all the responses to my posting. I had just finished four really long days at work and just felt overwhelmed. It's hard to be away from the house for 12 hour (I work a 10 hour shift) and come home to see him just sitting at the counter looking into space. And, knowing that he probably didn't get out of bed till at least 9:00. Wearing his swim trunks and a tee shirt, which is his choice of attire when I am gone. Then to sit down at the computer to find it locked up and hot because he can't figure out how to shut it down after playing his card games all day. Fortunately, I am still able to work because it keeps us afloat financially.
So, I do count my Blessings that his downward spiral isn't going too fast yet. And, he isn't violent or verbally abusive yet. My heart goes out to all the members who are having to deal with an abusive or dangerous spouse.
I have tried the local Alz support group but don't find it too helpful. Seems that one person or situation dominates the hour. Maybe I will try a different group. I would like to find one for younger caregives. Will see.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: SherylS

quote:
I have tried the local Alz support group but don't find it too helpful.


Ditto. I found the local group to be mostly older people who don't know how to use a computer to get the help that we can get here. At the local group, I'm the youngest there at 70 yr! Here, I'm the oldest! But I get more help here!!

Get yourself some anti depressants. A lot of us use them. It helps me to sleep at night and that's important for what we have to face during the days! Frankly, I call them my "don't give a shit" meds.....and frankly, sometimes I don't want to.
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: Jim Broede

Believe me, folks, you’ll survive. And quite possibly find ways to thrive for the rest of your lives. Doesn’t seem like it now. In your roles as care-givers. I had a 13-year-sojourn with dear Jeanne. Thought it was the end of the world at times. Thought I wouldn’t make it. But I look back on those 13 years, and it was indeed a learning experience. It was worth the effort. Worth finding the wherewithal to manage. To cope. And to survive. Taught me how to be a better lover. A better human being. Life wasn’t always meant to be easy. Maybe for a reason. I discovered that Jeanne was teaching me something. Every day that I took care of her. She was taking care of me. Teaching me how to be a better lover. An unconditional lover. A lover of the life force. Life has taken on new and profound meaning. Because I was an Alzheimer care-giver. I was being blessed. Didn’t know it at the time. But I know it now. --Jim
Anonymous
Posted: Tuesday, January 17, 2012 4:05 PM
Originally posted by: jdhgj

OMG. Scream scream scream away. Yes, it is awful. But please, everyone: It is NOT our fault when our loved ones are filthy, stinking and wearing clothes for a week. It's the disease. I've started being much more open with friends; when we go out I try to sit us at the end of the row, in the back so we don't "offend" the sensibilities of the "righteous" out there who don't understand. And, boy oh boy - do I look at others - included the disabled and handicapped and their caregivers in a totally different, empathetic light.
Tonight there was a huge crawly flying thing in the dining room. Before I ran for the fly swatter and the spray can I screamed! Didn't help the bug situation, but I'm breathing easier, now that the insect has been sent packing!
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: lurk

quote:
Originally posted by SherylS:
At the local group, I'm the youngest there at 70 yr! Here, I'm the oldest!

What? Did I misread that? Whatever gave you that idea? I've got you beat by two years, and I know others are older. You're just a young whippersnapper. Wink
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: Dorinne

I'm young at heart, but in reality I will be 72 July 9th. (and crazier than Jim)

I'm a caregiver, but I am still alive and still want to have fun. Good clean fun. Ed and I always had a good time together. So sad.

None of us expected this in our retirement years, but we do the best we can.

I never had a problem with patience, I was always the calm one. But this has tried my patience.

He did not ask for this disease it just came, he can't help it I know, wish I could fix it for him.
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: DLMifm

quote:
Originally posted by SherylS:
quote:
I have tried the local Alz support group but don't find it too helpful.


Ditto. I found the local group to be mostly older people who don't know how to use a computer to get the help that we can get here. At the local group, I'm the youngest there at 70 yr! Here, I'm the oldest! But I get more help here!!

Get yourself some anti depressants. A lot of us use them. It helps me to sleep at night and that's important for what we have to face during the days! Frankly, I call them my "don't give a shit" meds.....and frankly, sometimes I don't want to.

Finding the right support group is like finding the right church group. I visited several before finding one that resonated.

I joined the anti-d family a year ago to stop worrying at night. I must get up with DW during the night to compensate her forgetfulness so sleeping pills are not an option.

I match my dw with number of meds taken that rules out alcohol. A 94 year old lady friend recommends a rum toddy as needed.

I high lighted two forums and clicked on notify to send daily digests. Amazing the caregivers and spouse forums are in the 200 messages a day range. However being able to read all the posts is a great education and I can scroll through the posts very quickly.

I visit other forums. Like support groups there is a huge variation, Thanks to the participants on the AA board this stands head and shoulders above the crowd.'
DLM
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: Jim Broede

I'm 75. And I'm far crazier than all of you, too. --Jim
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: btucson

Haven't been able to log on for a bit, need to work. I envy those of you who only need to worry about taking care of your spouse and not what happens if you are no longer able to work and pay the mortgage, bills, etc. etc.

Thanks Cathy J.M.for your reply. I'm afraid we are in the "between and rock and a hard place" as far as getting finacial help for daycare while I work. Don't have enough to pay for help but make too much to qualify for assistance. And, we would never have enough money to live in assisted living or to put him alzheimers care center, but we are comfortable in our day-to- day living. So I will be the caregiver until whenever. And, I hate to think about it, but our daughter will be stuck with him if something happens to me.
I am looking for a new support group too. Besides trying to find a group with younger caregivers, it would be nice to find a group with members who are in my same financial situation. My current support group has members who can easily afford to admit their spouses to a caregiving center - one member admitted her husband temporarily so that she could remodel their house to accommodate his problems. He is over 80 and I don't believe she has ever had to work a day in her life (outside the house). And another woman who admitted her husband to a facility when he started being agressive. I find it difficult to have sympathy for them. That will never be an option for me!!

Sorry. Enough venting for one night.
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: genevieveln

Dear Amy Ann,
My husband also has frontal temporal dementia, I gasped when I saw you are raising two small children. Scream? Why would't you scream all day and all night. I am so sorry.
While my life is terribly frustrating and I feel sad, hopeless, angry and resentful, I cannot imagine what it would be like to have 2 small children in the mix.
You must be one hell of a strong person. I hope you can acknowledge what an amazing person you are.
Blessings to you.
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: Ben's wife

btucson - I understand completely when you say you wish he had a life threatening disease instead of AD. I certainly don't want him to suffer, but I'm beginning to think there's no light at the end of the tunnel. I have the same problems with his not wanting to bathe, change his clothes. Now he refuses to eat. He'll tell me he wants something, I fix it, only to have him sit down & look at it, and say "I can't eat that". I can't afford to be throwing food out all the time! Had himto the doctor, he said not to worry about his not eating. But I do. I'm home with him all day, every day. I sympathize with your having to work, but right now it seems that even 5 hours away from home would look good, no matter what I'm doing. I can't leave my husband alone.
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: DLMifm

quote:
Originally posted by Ben's wife:
btucson - I understand completely when you say you wish he had a life threatening disease instead of AD.

<><><>
I understand wishing he had another disease. Family and friends who last LO's to cancer experienced equally devastating caregiving roles. We all have difficulty accepting that Alzheimer's is every bit life threatening. It is terminal unlike some others that hold out a cure.
<><><><>

I certainly don't want him to suffer, but I'm beginning to think there's no light at the end of the tunnel.

<><><>
It breaks my heart every day knowing there is no light at the end of the tunnel.
<><><><>


I have the same problems with his not wanting to bathe, change his clothes. Now he refuses to eat. He'll tell me he wants something, I fix it, only to have him sit down & look at it, and say "I can't eat that". I can't afford to be throwing food out all the time! Had himto the doctor, he said not to worry about his not eating. But I do. I'm home with him all day, every day.

<><><>
Same here, I see my LO becoming more fragil everyday. I cook meals to share. Leftovers, refused, food goes back in the pot or saved for another try.
<><><><>

I sympathize with your having to work, but right now it seems that even 5 hours away from home would look good, no matter what I'm doing. I can't leave my husband alone.


I try to make her life comfortable. As the AD progresses my ability to slip out for a quick errand has vanished,

The more the caring gets stressful the more my own memory suffers.

Sharing on forum helps.

Please remember none of this is your fault. Fight the loneliness.

DLM
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: dayn2nite

quote:
Originally posted by sans espoir:
There is no positive future for us. We had planned a separation, years ago, and now he has just forgotten this!

I want him to be safe and secure, and will do my best to have this happen. As recently as January he asked "when are you planning to go to _____? When we talked about it in March or so, he told me I was crazy and that I would never get there. Why? I think because he really does not care what happens to me but I am going to do my best for him and also do my best to find my freedom.

It is not that I want another man or another relationship. I just want to be free and who does not want to be free?

JAB, especially as a new poster I will take your advice. I don't think anything goes on his mind except whatever passes through at the moment.

His hostility toward me; very quick, if I am not on my game, is more than exhausting. I did nothing to deserve this.

Cathy, it is not clicking in. The love has been extinguished. Maybe I am not as compassionate or caring as others here. I may have 25+ years to live and I don't want to live them like the last few years have been.


It doesn't seem like he cares because he can't care - he has a brain disease.

The best scenario under these circumstances would be to see the elder attorney to get his legal affairs in order and then to start investigating ALs or NHs for him. This way you are giving him safety and security and you will have your life back again.
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: Cathy J. M.

Well said, Pastry Girl!
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: genevieveln

I had not continued to read after reading Amy Ann;s post, then I saw the post where the ill person actually threatened the caregiver with an axe. And she herself was suicidal.
These are extremely serious situations. Not preaching, but it seems that actually getting a weapon and raging at the spouse it is time to leave the situation. I understand the fear of not having money; I know you are a rational person and realize that won;t matter if you are dead. This sobers me greatly because I fight these decisions thoughout the day.
I pray for me, and for all of us to help ourselves. I hope I didn;t upset you by writing this, but it is very frightening to see what is happening in your life.
I am keeping you in my prayers..
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by DLMifm:

Where do I find a financial manager who works pro-bono?



If your son means a financial expert to manage investments in stocks and bonds, then only the kind who works on commission (when you buy or sell) is free. The drawback is that since they only make money by advising you to sell one stock and buy another, their advice is biased in this direction. The other kind of investment advisor charges a fee but I have no idea how much -- might be worth it if investments are big $.

For advice on stretching the income you'll have -- cutting expenses, basically -- the only free advice I know of (aside from the oodles of it online) would be from a nonprofit credit counseling agency and from Debtors Anonymous. I did ask our priest if anyone in our church would be a good person to ask for longterm financial planning, and she did recommend someone with an excellent business background. So I have that as a kind of backup.

I finally (after a couple of years of wallowing) developed a workable strategy for cutting our annual expenses. What got me motivated was adding up the potential financial payoff from various cuts -- and finding that it all added up to over $14,000 a year. That's a lot of money to us.

Then I divided the potential payoff items into "easy and quick" and "take longer" and "still consider." (I just did this in Word, which often helps me think better -- using Excel only for some calculations.)

This really got me going because I knocked off the "quick and easy" list in no time and am now well into the "take longer" list.

Part of my motivation is that by cutting expenses this much, I won't have to spend so much time trying to earn money (to fill all these leaking expense buckets) and will be able to get back to my studio to paint.

Hope this wasn't completely off topic for you.
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: pastrygirl

btucson, this awful disease victimizes our loved ones without our consent. But we don't have to allow it to victimize us as well. You always have choices, no matter how hopeless things seems.

Your posts are peppered with "nevers". I would like to suggest you quit using this word or even thinking in those terms. Eliminating options with hopeless thinking keeps us all paralyzed when what we need is motivation. I understand complete exhaustion but whatever energy you have should be channelled into finding the help and resources you need.

The first order of business should be meeting with an elder attorney. It's impossible to surmise from a disucussion forum what people have had to do to get their finances in order and place their loved ones. Assuming everyone else has money when you do not is a way to reinforce your sense of powerlessness. Only misinformation or lack of information keeps us powerless. You need to speak with an expert on Medicaid and marital financial issues. It is so complex and mind-numbing yet there are options and loop-holes aplenty. There is every chance in the world that an elder attorney can find a way out for you and your husband so that you do not have to worry about your future.

Support groups have to be visited more than once or twice. With our local group, often the newest member will get the most attention when they first attend. I try to listen and learn, even from the newest members. If you feel you're not getting enough time and feedback, speak to the moderator or just insist on the attention you need.

Caregiving is exhausting and it's hard to find the strength to fight for ourselves. You have to rally on your own behalf - get out of the negative thinking and look at all the possibilities.
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: DLMifm

quote:
Originally posted by pastrygirl:
It's impossible to surmise from a disucussion forum what people have had to do to get their finances in order and place their loved ones. Assuming everyone else has money when you do not is a way to reinforce your sense of powerlessness. Only misinformation or lack of information keeps us powerless.


We managed to get our resources in order {I think}

definitely not interested in sharing private finances or asking details of seeking what people have had to do to get their finances in order
However
I am being pressured by my son to engage a financial adviser as to how to best stretch my retirement funds.

We have a wonderful elder attorney, and a number of care-management resources.
The SHINE counselors have been a help with health insurance and PlanD etc.
Where do I find a financial manager who works pro-bono?

Thinking everyone else has money when you do not. It is easy to draw false conclusions when others have access to assisted living facilities and other direct pay services.
Anonymous
Posted: Tuesday, January 17, 2012 4:06 PM
Originally posted by: East Texas

I just found this website - and having reviewed some of the comments, I don't feel so alone anymore. I moved to Washington State from Texas to be closer to my Mom who lives an hour away. I lost a brother awhile back so I am the sole caregiver now - I just can't believe this person who was my Mom is so mean to me. I try to help her in everyway and it is just unbearable to hear the way she talks to me. It is never good enough. I gave up my house, my job, my friends and don't know a sole here - I pretty much cry everyday and I never used to. It seems so hopeless - my Mom is so adamant about refusing help, she is hostile, won't eat and is wearing the same clothes everyday even to sleep in. Her hygiene has fallen by the wayside and yet when we get to the dr/lawyer/dentist etc. I look like the crazy one - she completely switches over to practically "normal". I too just feel like driving southbound until I run outa gas! I know I can't but I don't feel so alone knowing there are others that are going through the same thing - ALONE. I only wish I knew when she went from being "alittle forgetful" to this other person that I don't even know. I missed it. Thanks for sharing - maybe there is a support group close by. I can't go back to work for sanity sake because of the situation. I need to realise this is a disease and some of you out there have it so much worse than I - especially if you are raising young children. God Bless y'all for your strength.
 
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