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Hi Deb: Sorry your mom passed at such an early age. I can understand how hard it is to understand a parent who is just not happy on this earth. I haven't had the experience with my folks, so maybe I can't truly imagine it, but I would think it leaves you feeling at a loss. Why isn't this enough or that enough to engage them in life and all that is good. That they are unhappy, we understand, but why they can't find a reason for joy of life is a mystery. It's just who they are and since we don't walk in their shoes, we really can't fully grasp it.

Your MIL is so fortunate to be in your care. She is blessed to have someone like you who really tries to understand where she is coming from and what you can do to make her feel safe. It will be a long road for you and we will all be here to support you.

Love and Hugs, Cattails.
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I'm starting to have the same problem with my 83 year old husband. We have been married 32 years & its been nothing but medical problems for the last 6 years. He has fallen with a shattered right shoulder/fx rt. wrist in 2006, supra public catheter in 2009, heart stent, diabetic, now with 2 diabetic ulcers & having a 2 hour hyperbaric oxygen chamber tx 5 x a week with a hour drive one way & he is in a wheelchair. He is unable to walk & in a wheelchair plus needs help with his shower/dressing. I keep wondering what I did in my previous life to have to deal with him on a daily basis & that is why I finally found this site. Looks like a lot of others have the same daily thoughts of "why do they keep suffering" & "what have I done to suffer along with them in trying to keep them alive". I'm only 65 but I'm tired all the time trying to deal with him. I can see where people wish their "loved ones" move on sooner & not later.
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Cat, thanks for understanding and that is why I can understand others a little bit. I guess in my mom's mind with her not happy is kind of the same way as some of these with AD and other illnesses. All it seems that we can do sometimes is just pray to give yourself strength and help ease the mind of the person we are caring.

jrcat, 32 years is a very long time to be married and I would try to look at the good times of your marriage that you two had and try not let all this illness bring you down. You are going through a lot with your husband illnesses and only the man above knows when their time is to go upstairs and I'm not sure why he would allow someone to go through such ordeal. Of course, he went through a lot for us too. All we can do is pray and tell him we can only handle so much. Is their anyone else or can you afford Respite Care for your husband in order to get some sort of break. Any family members that can take him back-n-forth at least to the doctor? I hope you are able to get some rest and peace of mind as well for everyone else on this site.
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jr: So the last 6 years have been very difficult and I can understand that you are very tired from the stress of care giving and from seeing your husband decline. You married a man who was 18 years older than you and you have been married to him for 32 years. What were the other years like, the first 24. Were they happy? If so, I hope that will bring you some comfort in time.

You never did anything to bring this unhappiness on you, but you did marry a man who was older than you and he is now experiencing age and possibly life style related illness.

Can you afford to get in home help? Is there anyone, children, friends, relatives, to help with the travel and medical appointments. Can he be in respite care for a weekend and give you a break? Is there a caregivers support group you can join, a place to listen to others and share your situation?

I hope the best for you and your husband. You have had a difficult 6 years and I hope you find some peace. Cattails.
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I live in a small town & all his family live over 1000 miles away. There is a lot of elderly in this area where I see many elderly still walking without any help. I guess I'm mad that my husband didn't take care of himself so that he wouldn't be in the shape he is today. My 86 year old mother loves to garden, is able to take care of herself except she is unable to drive due to eye problems. She will be a great help when she moves in with us in July. Its better than having her call me from out of state all the time crying because my sister stole clothes etc. from her & I can watch her better here with her minor dementia. She once lived in this area & my dad is buried in the next county so we can visit there.
I know that my problems with my husband will lessen once the trips (18 more) down for the hyperbaric chamber will be finished. The best doctors are 2 counties away which is a pain but I guess they are worth it. He didn't have to use a wheelchair when he did & could have used a walker/cane if needed. I just need to find time for me for a change & I guess that is what I will need to do.
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Elderly people suffering from ALZ and/or Dementia have NO rights. Living wills are useless, medical directives are useless. their wishes are ignored, and their mental anguish and torment is chalked up to "depression", and this country needs to start taking a long and hard look at this situation. Modern medicine can keep our bodies alive for many more years than our brains are meant to survive. Wake up America
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I have to somewhat agree with you jrcats. My mom had an advanced directive naming my brother to do what she wanted. My brother did everything EXACTLY the opposite of what she wanted and the nursing home and doctor just went right along with it. Maybe they had to but...a living will seems worthless to me as well after this experience. She suffered, was in pain and didn't know who she was or who anyone else was and she was just existing. Something better has to be done because the living will is just a request...it is not legal and doesn't have to be followed which in moms' case it wasn't.
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Well I told my husband that the weekend is "my time". Last nite I made 10 ramekins of pineapple upside down cake for my hubby plus over 100 different size dog bisquits & 2 different type of cookies for my mother for Mothers Day which I made into little poodles. Today its 5 bins of yard leaves with the radio on & its not too hot out. Maybe weekends will help me get out of my "funk". Thanks for everyone's tips & ideas. With all his meds & dr. visits etc. its beyond our cost to have someone come in & I doubt he would like it. We had a nurse come in last fall 3 x week for his foot ulcer & he wasn't too happy about it.
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Regarding my mothers slight dementia I am the oldest of 4 (all live in other states) & I get along with my mother the best. I know what she likes & wants when she dies so I have no problem with her wants. I see it as a challenge & she will help around the house (she loves to garden & do housework).
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Jrcats: BHenson's mom lived with her too and she knew everything he mom wanted at the end of her life because they were extremely close. Due to an oversight, however, the Advanced Care Directive was not taken out of the brothers name. The brother was out of state too. He went against everything the BH mom wanted and the result was it prolonged her suffering.

Make sure you have a POA for your mom and a clear medical directive that gives you the right to speak for her when she can no longer speak for herself. Just knowing what she wants isn't good enough.

Make the best of those weekends. Cattails
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I have POA---- and----her "medical directives" could not be any clearer----and--- both of my brothers and I agree on everything and we still cannot be advocates for our mother's wishes.
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OD: Does her medical directive specifically name you as someone to make health and end of life decisions on her behalf?
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My Mother is a lot like your Mother ,with the same illness' and behaivors. I'm pretty sure that I can blame her problems on the mental health medication(s) she's been on for the last 40 years. Damaged her brain. Ruined her Health. The medications have caused her years of "living hell" for both her and myself. Nobody can fix her damaged brain. It just ruined her life. All I can do is just give the best care that I can and the care that she'll allow. It sounds like you're taking excellent care of your Mother, even if she refuses all the care that could be given. Don't expect her to let you know she appreciates what you're doing for her because her brain is damaged. Don't feel guilty that she isn't making good choices because the medicine is the guilty culprit. Be mad at the medicine. Put your Mother as "second fiddle," and don't let her damage have an impact on you.
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Yes to the POA question. Why do you ask? It's a useless piece of paper as long as a person is putting food into their mouths.
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Ohiodaughter: I believe I was the one who asked, but it was not about the POA. There are legal documents that allow us to speak for our loved ones who can no longer speak for themselves and allow us to see that their wishes are honored. A POA is not such a document. I asked if her health care directive listed you as some one who could speak on her behalf.

I think this is an important issue to discuss. I have POA for my dad. It allows me to sign for him, gives me permission to handle financial and other issues, but it does not allow me to speak for him in a medical situation.

You can obtain a health care directive that specifically gives you the authority to make medical decisions for one who is not able to do so for themselves. I asked if you had that because it's important that people realize how tricky the issues can be and what is necessary.
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cattails, I cannot agree more. The POA has nothing to do with the health care directives. That is a totally different thing. Just as an FYI to everyone, I just found out after mom died that the POA dies with her. I could not touch her bank accounts once I made the mistake of telling them that she had died. POA ends upon death and the Living Will is completely different than the POA. Also, only the first person listed on the Living Will can make decisions unless that person gives up the right or cannot be found. Believe me, I learned the hard way.
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I'm not clear on what I need to do to handle my husbands & mothers medical, bank accounts etc. I think I need to be on her bank account but what about medical decisions? Neither has a will at this time.
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I have all documents known to man from my mother when she was in a position to sign them...medical power of attorney, living will, financial power of attorney...you name it....useless......as long as she continues to feed herself. I don't know what is meant by "directive" but I have a form drawn up by an attorney for my mother years ago stating that if she is not of sound mind her daughter can make medical decisions for her. Here it is called medical power of attorney.
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Ohiodaughter: What decisions would you have made for your mom.
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I would have kept her at home with me and "let" her refuse to eat and/or "forget how to eat" as she was doing 6 months ago. I would have called in Hospice and let her pass away from dehydration or malnutrition in my home, in her room, with her family that she knew and loved, and in peace. I would not have taken her to :hospital---- then nursing home --- then psychiatric ward-----then memory care assisted living where she is now....crying all day, shaking all day, drugged up, and EATING because she is like a small child who thinks if she doesn't eat for these strangers (who by the way she thinks have BOUGHT her...) she will be in some kind of trouble or she feels she is being rude or "bad". Does that answer your question? Now...once in this "system" there are no options or choices for her.She's stuck in a horrific "Groundhog Day" life existing on applesauce and jello.
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Ohio daughter, you are where I was very very recently. Would have, should have. I too learned that once the doctors and hospitals get their hands on mom, I had little say and yes, as long as she continues to eat, there is nothing you can do unfortunately. I too watched as my mom faded into someone who I didn''t know. Unfortunately, I allowed a feeding tube right after a fall. At the time, mom was mentally very competant and I wanted to do everything I could for her. That was SUCH a mistake but..it was what I thought was best at the time. It is not in any way easy to watch your mom go downhill and I can sincerely empathize with you about the eating. Just because she's eating does NOT mean she is ok. I too had to deal with that in the beginning when mom could eat jello etc. I think the hardest part of caretaking is in the end when we feel helpless to do what we promised our loved ones we would do. At some point, we have to realize that we did all we could within our power and hope that our mom's know that. I cannot tell you how sincerely sorry I am that you are going through this as I just did myself. Mom passed away 2 weeks ago.
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Bhenson, i am sorry for your loss. I don't even know you and I have tears in my eyes. It is such a hard cruel path they have to go down to find peace. To go back to the original topic of this thread--- I DO and my 2 brothers DO - in no uncertain terms pray for our mother's misery to end. We lost our mother 8 months ago when her brain no longer allowed her to be who she is/was. You now have peace of mind knowing that you did all that you could and you were there for her every step of the way. Hope you are doing well and finding some calm now.
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Ohio daughter, yes there is calm and to be honest, I think people might wonder why I am not crying so much. It's because I did all my grieving when she was in the nursing home. I lost her long ago and outsiders don't see that. After she died, I still felt like I lost my mom for good. I don 't know how to explain it. I knew her mind would never come back but while she's alive, there is that weird little hope or thought in your brain. When she died, I didn't even have that and yes, I do feel more alone now. I visited her 3x a day. I'm lost now to be honest. Have to start life again but it's only 2 weeks and my depression is still getting a hold of me at times. I wish you well and hope that your mom doesn't suffer much longer. whatever she says to you, well...it's not her. Don't take anything to heart that she does say. Hugs to you
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Ohiodaughter: I am very sorry for all that you and your family are going through. I'd want the exact same thing that you expressed. I have my dad at home. He has some vascular dementia due to stroke, but nothing like what AZ people suffer. He'll be 90 this September. He's getting weaker, less engaged. Sometimes I wish I could place him in a NH because I'm just tired. The follow up thought to that is always the horror of him living in a NH for years, sitting in a wheel chair, asleep, with his head hanging down and a staff of professionals keeping him going.

I have a new directive called Physician Orders for Life-Sustaining Treatment and it calls for "comfort care" only which has been signed by me and his doctor. It provides instructions to EMT's and hospital staff. No feeding tube, limited use antibiotics (Ok to use for UTI, but not for pneumonia), etc.

We all do our best to take care of our parents and ease their suffering. I have no idea what will come for my dad, but I pray everyday that he passes away here and I hope it is soon.

What you are going through is so painful. I'm so sorry for your mom and your family. Hugs, Cattails
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Ohiodaughter--My mom is still at home living with me, has AD and going downhill fast. She barely eats and I don't make her eat much. I was relieved to read your post saying what you would have done to keep your mom "out of the system". If my mom stops wanting to eat I will let that happen and won't call doctors, etc. I don't want her to end up in a nursing home, that's for sure. I'm so sorry for your situation and your feeling helpless to do anything. If the person does not want to eat then you are not depriving them, just following their wishes. Bhenson, your last post is helpful too. All of you, my heart goes out to you.
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cattails you are really a wonderful caretaker. Your dad is blessed to have you. I've been talking to you for many months now and you can just feel the "goodness" in you. Hugs
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Barb: That's exactly how I feel about you. Love and Hugs, Cattails.
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Barb: In all truth, I think you are far better than me. What you went through with your mom living with you, all the years/months of her losing her mind. All the tears for the loss of the mom you loved, long before she passed. You leave me in the dust. I don't think I could have done what you did. You are such an amazing child of God. I'm just privileged to know you. I love you, love you, love you. Cattails.
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We also have the "comfort care only" directive (DNR)and have gone so far as to instruct the nurses aides and staff at the dementia care unit that we do NOT want anyone hand-feeding our mom, force feeding her, or EVEN encouraging her to eat. I think we are maybe the ONLY family there out of 24 who have this given them these instructions. They must think we are barbarians. However, our mom keeps nibbling on applesauce, jello, and M & M's...enough to "sustain life" for God knows how long. Until she falls, gets pneumonia, has a heart attack, etc. the DNR is useless also. If I was a rich person I would be trucking back to my home as soon as I was done typing here and hire nurses so that my husband and I could still have some sort of a life. (with 2 brothers there is not much help in the personal care department so they would never take her for "respite" time for me..I just want her misery to be over. Last night she told me she hates her new high school and is going to quit school and stay home. She has been there for 4 months now and has no clue where or who she is. This is not LIFE..
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I was discussing these issues with my aunt and asking her how long my mom would last and she said I take such good care of her, there's no telling, since she's never around any germs, never even gets a cold! But the "eating" thing might be what will finally cause her body to give up. But as Ohiodaughter says, as long as she eats just enough to sustain life, then on it goes.
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