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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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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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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, 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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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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Ohiodaughter: What decisions would you have made for your mom.
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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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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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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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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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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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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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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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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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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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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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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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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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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 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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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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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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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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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 think a lot of people really do not know what to say to someone when they have lost a love one from such a devastating disease such as AD for they do not fully understand what AD is all about. However, they do mean well and I take that into consideration. On the otherhand, I was my mom's guardian except she didn't have AD. She was depressed, couldn't drive, alcholoic and a chain smoker with type 2 diabetes. I have to admit I felt releived from the extra care and worrying and in a way felt sad for losing my mom at earlier age of 58 due to heart attack but, I also know that she was not happy on this Earth. In a way I can understand but not fully just yet for now, I am caring for my mnl. She was diagnosed with AD two years ago and it has been a total different experience and she is a fire-cracker and has always been that way. So, is seems my journey has just begun. I just wished other people understood more about AD and Dementia.
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This sounds like it might have been written by me. My mother moved in with me and pretty much took over and criticized the way I dressed, the way I cleaned house, my weight and my TV service--but took over the TV. She was very unhappy and very miserable and didn't have a quality of life. Her death was not as devastating as watching her deterioration.
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After my previous post, I went to visit the dementia care unit at an assisted living facility, thinking this would be the next step. Yikes! It was awful--so depressing and I couldn't imagine putting my mother in one of those places. I can't bring myself to hire an in-home aide either because I know it would be such a hard adjustment for both me and my mom. So I'm left with all the conflicting feelings of
wanting her to die peacefully and knowing how devastated I will be when that happens. The thing with Alz. is that the patient just keeps going downhill for so long and getting worse and it goes on and on. Each day I wonder if I can do it another day. So far I'm doing it.
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Bhenson, I'm so sorry. I understand that you said your goodbyes years ago - so did I. So many tears then. I pray that the good memories from before will replace the difficulties of the recent past. It sounds like you were a caring daughter.
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Wow Elizabethgrace you are sooo on target. Unfortunately, my mom died a week ago yesterday but..I was in this position. People say the dumbest things thinking that it's comforting. I hardly cried when mom died last week. Why? Because I lost her a long time ago to dementia and illness. For the last month she hardly knew me and couldn't speak. It's also hard when people say she's better off now...she would have been better off without dementia! Such a fine line but I do not judge ANYONE for wanting their parent to pass away gently. It's so hard for us to see them this way and even harder to care for them. It drains you so that when the time comes...I think you're almost at peace with it. I cried enough when she was alive. I came to terms with it then...I haven't cried too much since the funeral. I had said my goodbyes and given all my love to her long before this. Even if your loved one is a pain in the butt, I think they know that too but they are scared. This was such a learning and loving experience for me. I was the same wishing it would be over. Then it is...faster than you thought.
Many hugs and good wishes. We all understand completely.
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BelleFleur, I understand. Your experience with your mom sounds like what we had with my father. I'm not sure there was a tear shed at his funeral; we were just all worn out by the time he died. Now I have responsibility for my mother who has dementia and a long history of mental illness. Whenever some well-meaning person says to me, "Well, just be thankful you still have your mother!" I am left speechless. No one who has walked this path ever says anything like that. They're the ones that say, "Bless your heart". I don't still have my mother. I have this stranger whose life is confusing and hard and frightening to her. And people like that make life hard for others.
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