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my dad is 90 and i am the only family in his life. i am not a mother or am not a cook and am not domestic. but yet i know that if i dont hug him he has no affection and feels very much alone and frightened. i still work... in fact have a lot of responsibility and risk. i feel like i dont know what im doing. i have no kids and dont cook and cannnot get him to agree to getting any help. he needs company more than anything. i want to be there to be his health advocate, but i hate feeling like i have to let him know where i am all the time or else he feels lost. i am tired. i am guilty. i am wearing out and i need to know im not alone. and if there is anything i can do, id love to have suggestions.
he drives..urg... is getting a motorized wheel chair but i will not get in the car with him. my car is too small for a ramp. the only parts i feel in fairly good control of is his meds, but that was only because he ended up with losing them and double taking them until i finally won my battle that i should hold them--especially the controlled ones. he will not allow anyone into his life but me. it means i cant get away; that and my business. my husband doesnt get along with him and that causees martial problems. i know there is a better way to handle it than the guilt and failure i feel. i need help....

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If they can't find a cure for the common col, what makes you think they can find a cure for Alzheimer's? LOL :-) Have a gr8 weekend everybody!!! :-) Best. :-) W
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agreed. i think medicine is overrated for the most part.
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I am still not sure that many medicamentes are really useful in some dementias, like in Alz, many reseaqrch has and is being doing. And nothing is sure sofar. If so, what is the use to give lots and lots of medecines. It may be a waste of time, money and effort. Plus the emotional waste.
I would sugest to read and read, and evaluate the cost (emotional, finantial, and some other) in order to have a better life.
What happen if she/he does not take the pills? Perhaps nothing. In that case is a waste.
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Thank you daughterlinda and emjo...I know you are right. I keep forgetting that I'm dealing with someone who is more child than adult when it comes to reasoning...it's like talking to one of my grandchildren (ages 5, 3 and 1). Still, I want him to have his dignity...it's a fine line! Thank you for the hugs and encouragement, advice and caring...it helps to know that I'm not alone! Hugs to all!
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Scared - Please don't think of it as your personal failure. It does not reflect on you that your husband rejects your help etc. it reflects in him. Decide what you can reasonably do, do it to the best of your ability, and accept that you cannot control him. I am sure that is hard - but it is the reality
daughterlinda - that is right - don't be so hard in yourself. You may not be successful at getting him to take his meds 9 tries out of 10, but that is not your personal failure.
((((((hugs))))) to both of you Pat yoursleves on the back for doing a good job and for caring, Where would they be without you?
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if you fail 9 times and win 1, thats pretty good for a start! somebody told me there was no need for me to be so hard on myself since everyone else was already doing such a good job with that! :)
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Thx for the thoughts. You both make valid points, and I know you are right. Sometimes it's just so hard to remember these things when you are trying so hard to help this person and they are rejecting your help, your care, your concern...my husband forgets soon afterward how nasty he was. It's harder for me to forget...the pain lingers and festers. I have to learn to forgive more, another hard task. I know life is a test...I just wish I wasn't failing so often!
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Also, maybe they are being a bit anal with this 6 and 8 and 1 and 3 time crap? really, is it THAT important? have you done research online? when working (!) i am the director of a vet clinic and work a lot with meds. what is told to the patient varies according to what we perceive with be the compliance rate. I mean, there is PERFECT, then there is close to perfect,....well, you know....
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really, scared, really, there is only so much you can do. we are only keeping them as healthy as they will alllow us to do. you do prepare them in the morning nooon and evening pill dispensers, right? when dad gets stubborn (but he hardlly ever gets mean) i show him the dispenser and he goes, "oh, well, you must have not given them to me right". In other words, its always my fault, but i find that when that triggers me, its another trigger that he has had a lot of years programming inside of me and sometimes (when im not ready to shot myself) i can look at it from a distance and say "you know what, this really hasnt nothing to do with me. i just happen to be here." ive even started to do that with my husband, who knows "what buttons to push". if he does, insists on doing anything that runs against my will or his doctors will, i remind myself that he really does have a (however misguided) choice to make and that by standing in his way, i might be right and maybe not. and i usually let him do it, knowing that tomorrow will be another bad day, but it might have been anyhow. i dont know what id do if he got nasty. maybe walk away? with my husband (who can get real sarcastic) ive no way to just walk away so i have started "mentally disconnecting". Its hard, but its powerful. once (and while) i figure out how do it, my whole world settles down.
Another thing i try to do is change the subject. Okay, so hes not going to take these life sustaining drugs and that will affect him and there is really nothing i can do to insist that he continue life in his body with his conditions, so i just change the subject. "i stare out the window and go "it looks like rain"...or some other totally nonense thing. My pets keep me going as well. I can pick one up and just their peace transfers to me....Dont know if any of this will work for you but i have gotten lots of help already in a short time from this group and i thought i should give some back when i have it. its not always good. give and take?
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Just need to vent...my husband won't take his evening meds again. I go through this so many times, I am so angry about it. He insists he just took his pills 20 minutes ago. He hasn't taken anything but his Parkinson meds that he takes at 8, 1 and 6 every day when he took them at 6. Now he won't take his nighttime meds. He gets so nasty. Won't talk to me. I just don't know what to do. I know one night won't hurt him if he skips them, but why oh why does he have to be so nasty? I try to be patient, explain the times he did take his meds today, etc...I know there is no reasoning with dementia, but I am so tired of arguing this point so often. Now the doctor wants to start another med for a vitamin B-12 deficiency. How am I supposed to get him to take more medicine when he won't take what he has now? I know many of you understand what I am going through. How can I cope? I just don't know...I just don't know...
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What a unique marvelous moment! I am very happy for you... ery, very happy. Treasure that moment because is a jewel!
Enjoy it... and receivemany good wishes from all of us!!!
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Awesome, daughterlinda. A gift of the Spirit. Remember it well. xo
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Daughterlinda...what a beautiful moment to remember! cherish it...
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woweee! Tonight i heard my father say "You were right". I said WHAT? He said "you were right when you told me that i was taking too much medication" I was amazed. I said "What?? You have NEVER said that before" He said, "when you were young, i raised you. Now you are the parent and i am the child. You have to be right for both of us". I saw this moment of clarity and i am speechless. Tomorrow we may go back to the staring and the stubborns and the arguements that its not going to KILL you to drink this.... or whatever.. but tonight he said
You are right. I am your child. You were my child but now Im yours." and then he said, You know, when i was your dad and i used to spank you and i told you it hurt me worse than you, well it did. I hated spanking you. but it did make you a pretty good person.
Okay, im not used to that. so i told him....well, guess what, when you act up im going to spank you and one thing you can count on is its going to hurt you worse than me still!
He laughed. He understood.
I feeling like crying, tears of joy, tears of sadness. borrowed tears and paid back tears. But i dare not. If i start, i may not quit....
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This last post "Hugs to all" is by far, the best post I've seen on these pages! :-) W
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Yes, hugs to all!
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Scared: you are reflecting very well our situation, at least, for many of us. Also I get angry and irritable, and when she asks why I am so angry at her, I just feel like crying and unable to tell her, because I know that she does not comprehend what is happening. Also because I also know that she will forget most of it in minutes.
So, what to do? Patience and self control and paying a price in our organisms... Lots of hugs for all... Hope the journey will be supportable...
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Thx "storm" and Jeanne. Sometimes I can think so logically and other times it all just comes crashing down on me. I wish there were some way to control my feelings so I could be more effective all the time, but some things are just out of my control. When I can stay focused, I can work things through....sometimes I wonder who the "normal" one really is! :-) I'm sure you know what I mean. I get angry at the situation and wonder why this is happening...I think that's OK, too. Professionals can and do help, I know, but it is such a maze of people, places and things, it is so hard to sort out. Until I get a final diagnosis from the doctor which won't be for another 3 weeks, I have to limp along trying to make sense of everything. It's just so frustrating when you don't know what to do. Thx for the advice and encouragement. God knows we all need it!
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The only way to be a truly effective caregiver is to put in a 100 percent concentrated effort, but you can not do that if you have other things in your life such as husband, kids, job, et.al. Caregiving requires 100 percent of your undivided attention at all times. Which is exactly what I'm doing. Of course, as a caregiver, your health is going to suffer since you're constantly looking after the health of others. BUT, you need to be in REASONABLY good health in order to be effective. So, you pretty much have to make sure that you're in pretty good physical and mental shape in order to do this job. To do this, it can be quite tricky. Blessings to all here. You're all in my thoughts and prayers as we all muddle through this together. :-) Wayne
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Scared, I didn't know how I was going to pay for it, either. I called Social Services and a worker came out to do a needs assessment. She recommended I apply for Medicaid. Wow, that seemed crazy. We were not impoverished. But clearly we would be if I was taking care of my husband instead of working and also paying for his very expensive care. At the time we thought he might need a nursing home any day. I went to an elder law firm, went through a spend-down process, and applied. He was qualified except that his monthly social security check was over the monthly limit. So ... we had a monthly deductible. ijdh0709 is right. I did not have to sell the house, and would not have had to if hubby had gone into long term care. While I went into it "in case" we needed a nursing home, it turned out to be very helpful for him at home, too. It covered things like adult day health program, and when he could no longer attend that, a personal care attendant, incontinence supplies, all of his many, many meds, doctor visits, etc. etc.

I URGE you to look into this. The "I can't afford it" line just may not apply. Instead of telling your family that you are not cut out to be a caregiver, tell it to professionals, such as a social worker and/or a lawyer, who can actually help you do something about it. Stop being lost and alone. Reach out to us, for sure, but also to those professionals in the community whose job it is to smooth the way out of this nightmare.
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Scared: You had mentioned that he does not think he has a big problem...just some memory issues. I get that with my mom and it makes me angry and then I do not know why I let myself get angry. Mom's denial is what makes me crazy because every day she talks about going home yet she cannot remember anything in a photograph...her favorite chair, her wall full of books, her kitchen table she sat at for many hours throughout the day...she keeps saying that when she gets home, everything will be ok. It is the sadness of it all that makes me crazy and the thought that it could be me one day and what if it is sooner rather than later and I have spent all of this time caring for her and then suddenly there is no time left for me, the way it should be, the way she had it before my dad died and before her stroke.

I don't feel so angry today. It is such a roller coaster.

Mom gets decent care with my sister so I have to let my sister take her for just awhile. Just awhile to gain back some sense of who I was. Mom is pouting and kicking because she does not want to go back with my sister but like her doctor said to her, "Do you know how lucky you are to have kids who want you?"
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I think we are all feeling the same things to some degree....
It is not easy to go through this. Thank goodness we have
this forum and all of us to support each other!!
Hope your day is a better one!
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Thank you. I remember reading something about that before. It's just hard to think clearly and logically in the middle of the night through the tears. Thx!
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You may want to consult with an elder care attorney.
My parents were told that if one of them had to go
for 24/7 care to a nursing home, there would be a spend down, in which
the spouse who was living in the home would be able to remain in the home,
keep half of the liquid assets. The healthy spouse would be allowed to remain in the home.
A good elder care attorney might give you the information you need to
help eliminate some of the fears you are experiencing.
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WOW! I don't know what to say. All of what is said here is so true. It's 5:41am and I've been awake for 2 hrs crying. I finally decided to come here because at least the people here understand because they have lived or are living through this nightmare. I am trying to stay focused on the here and now and until the doctor comes back with something definitive, I can't get any help. I know I will need to get help, but I don't know how I'm going to pay for it. LTC insurance doesn't cover it all, and the little bit of savings we have won't last long. Then I will have to sell the house, and then what? Where do I go? What do I do? I can't even find a job here. I spent 34 years in sales/customer service/operations, held responsible/management positions. I'm either overqualified, too old or don't have the right experience to find a job in this area. Not much here but restaurants and hotels and retail stores. Not cut out for that kind of job even though I've even applied to them. I appreciate the advice, though, because I know you are right. I admit it. I just can't do much now. Until I can, I have to spend my nights crying and my days trying to care for someone who thinks he's fine...just gets a little confused now and then and forgets things that aren't important...yeah, right. He has no clue. I know he can't understand it. Still, I don't know how to deal with it. I try so hard to pray, but even that hurts. I feel so lost and alone. Friends care and encourage me, but in the middle of the night there is no one to turn to...doctor suggested counseling and anti-depressants. I can't afford counseling and I was on meds for years. I weaned myself off and I won't go back....too many side affects, too many long-term issues with meds. So I struggle every day, all day to be patient and kind and to care. It just is too hard. I just want my life back. I want normal. I want simple. Is that too much to ask? Apparently.
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Scared, you said, "I have told friends and family for a year that I am not cut out to be a caregiver. It's not that I'm mean or don't care. I just don't have the mental/emotional/psychological strength to deal with this. At times, I just want to run away. Other times I just want to die."

You may be right. You may not be cut out to be a caregiver, or at least not a caregiver in this situation. So seriously consider changing your situation. Begin looking into long term care options for your husband. Please do not abandon him. Continue to advocate for him. Spend lots of time with him. Go play cards with him and have lunch with him and go for a walk, all the time knowing that if his behavior becomes unacceptable you can go home and come back tomorrow. There is no rule that you have to be his day-to-day hands-on caregiver. To recognize your own limitations takes courage. It is not a sign of failure.

When he is being cared for elsewhere you can take off for a week or two to visit your daughter and grandchildren. And she can come to visit you. Perhaps she would even want to visit her dad, leaving the children with you.

I kept my husband home through all 9.5 years of his dementia. It was the right thing for me to do. But I definitely do not believe it is the right thing for everyone to do. Please set aside "obligation" and "duty" and seriously and objectively think through what is the best thing to do in your particular situation.

Telling your family that you are not cut out to be a caregiver won't change anything. Take action.
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As I have said many times, I do not believe anyone should give up their life, job, marriage, family, health, sanity, etc to take care of their elderly parents. It just isn't right. I know it is difficult to be adult enough to admit to our limits...been there, done that. It is a hard decision and many times, besides our own guilt and sens of responsibility, we have siblings/relatives who just don't get it.

I spend lots of time in prayer, as I did before caregiving, each and every day. I know it was God's strength and grace that allowed me to do what I did. When my own health and the wellbeing of my family started to fail; I realized that maybe I had done all God wanted me to and it was time to get back my own happiness and health.

I wish I had a perfect answer for each of you. I just know you have to take care of yourselves first! Somehow you have to reach out and get respite care even if it is just a few hours of time each week to do what YOU want. Call Aging Services in your area, hospice, local churches may have volunteer groups, talk to their doctors....assistance is available.

Inthestorm and Scared my heart aches for both of you. It sounds like you are caring for people that were not the most wonderful to you when they were healthy. Can only imagine how much more difficult that makes your situation.

I wish you all courage and strength to do what is right in your situation.
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Hey Inthestorm, I don't know what I'd do, but I do know that as I read your post... I remembered feeling those feelings. I know how hard it can be.

When I was losing my mind I'd feel TERRIBLE, then I'd sit with myself... I don't know, maybe in the car on the way somewhere and I'd realize what I wanted to do was to be a good, kind person and there was no higher priority than my mom. My boys were doing OK, my sweetheart was helping me. So, I'd go back to it and do the work again and again.

Today, now that my mom has passed, I feel OK. I feel that I did the right thing for me and the right things for her. Perhaps I didn't take good enough care of my own health and I let my employment go. I didn't pay attention to my friends for a long time. Fortunately I had saved enough that I'm OK...

I don't know what the answer is for you, but I have confidence that every day... it will come to you and you will do what's right for you, and you will be OK with that. Just want you to know, I feel for you, I feel like I've been there, I know how draining it can be and I am wishing you the best and hoping you find a path that is right for you. One thing that helped me a lot was when my brother and his wife, who didn't do anything for my mom and only visited her for a few days each year pointed out to my mom that she was killing me. They told her to be more appreciative and kind and that helped for awhile. She was much nicer to me after my brother pointed that out to her.

Each step forward that you take, each day will add up to a huge pile of goodness for you in the long run. Someone here told me to hug my mom and tell her that I love her every day, because one day I wouldn't be able to do that. So I did that and that person was so right. No matter how hard it was or how snappy my mom got, I did that and today, I'm feeling OK and glad I was a good person to my mom.

I don't want my boys to have to do that for me. I agree with you. No one owes it to anyone else. I did it because I wanted to be that kind of person. She was my 'family' and my mom and I did what was right for me. I am SURE you are doing what is right for you too.
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Well, I don't know what to say that hasn't already been said. After reading all of these posts, what sticks out most, is the guilt ridden words---your mother took care of you. Really? Well, I took care of my son, he still lives with me (just graduated from college), and I would NEVER, EVER, EVER do this to him or whatever wife he ends up with. Do we really owe it to our parents to take care of them? This has me so confused and only adds to the SEVERE guilt-ridden stress that I am already experiencing as I watch my mother's health (despite the dementia) get better as mine declines. I have to believe that if my mom were in her right mind, she would not want to do this to me.

I face my future every day as I care for her. It isn't healthy to constantly think, "this will be me some day." I am 55 years old and I am overcome with guilt because I want to run away but I can't. I resent her (even though I love her) because when she was my age, she had the opportunity to enjoy an empty nest with my dad (now deceased), and to the best of my knowledge, I do not remember her ever taking care of someone even though she reminds me daily that is all she did. Well, she chose to have 5 children. I chose to have one. Her mom died when she was 8 years old and her mother-in-law (dad's mom) was placed in a nursing home. This just doesn't add up. And why do I keep hearing about this cycle of owing this to our parents? I am doing it out of love but I am sick of thinking it is my duty and I don't even want to do this anymore and that is the plain truth and it isn't because I do not love her, I am shot! I am done. I have had it. I am exhausted. I can't wait to close my eyes at night for escape but every morning it is there again slapping me in the face, over and over and over again. The only thing she can do is hold out her hand for food and pills. She made it to the bathroom alone this morning but had no idea where it was tonight. She isn't in a diaper, and most of the time she isn't mean (most of the time), but just knowing that another human being is sitting there waiting on you every moment of your every day is enough to kill someone. I have written here many times and I do have a sister that dumped both of us because she too went off the deep end. Sister finally said she would help again (after her 3 vacations), but mom is absolutely killing me with guilt about never ever wanting to go back to my sisters. ARE YOU KIDDING ME? Mom (in this state of mind) does not think she is any problem whatsoever and she chronically is stabbing me with not wanting to go back to my sisters. Sister is not mean but she isnt' me. Mom prefers me. WHAT WOULD YOU DO?
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I found this very comforting - hope you will also:

I'm here. I love you. I don't care if you need to stay up crying all night long. I will stay with you. There is nothing you can ever do to lose my love. I will protect you until you die, and after your death I will still protect you. I am stronger than depression and I am braver than loneliness and nothing will ever exhaust me. GOD

I don't know about most of you, but God and I have a long conversation every night.

We all have to tough it through. Cry at night. Talk to anyone willing to listen. Spill our worries and fears on this awesome website. And then get up tomorrow and begin again. I just think of everything my Mom did for me when I was young. I think she earned the same care and loving now that she is reverting to her second childhood.

So to Scared and daughterlinda, I am sending both of you and everyone else, encouraging thoughts and prayers. And if you sit real still, you can feel my arms giving you a long and heartfelt hug.
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