Carol, ask about Arthrotec. Or more precisely its two components which are generic: diclofenac and misoprostol. One is anti-inflammatory and the other keeps the first from being bad for your stomach. I stopped it the weeks I was in Maine and I think that may be why my leg has been acting up so much more. Back on it now.
They can still be buried in a pine box but have a nice casket for a funeral. My aunt had just a graveside service, but my cousin rented a nice casket. I didn't realize this and wondered why there was a small piece of material hanging out. After the service I was chatting with some cousins off away from the site cause we didn't want to interfere with them burying her. After about 20 minutes one of the guys came over to ask if we would be much longer. I asked why and he said they wanted to bury her. We said go ahead and that is when he explained the situation and I commented about wondering why that material was hanging out. He didn't want us to think they were stealing the nice casket. We all laughed and told him to go ahead, we understand. Had a good laugh knowing my aunt would be laughing too.
I believe most of us here hope something will take our LO long before the dementia does. Also, that when the end is near, to follow their wished can be heart wrenching for many. And then there are those who are so afraid of dying, like my BIL was, they want everything possible done to keep them alive. No matter what your views, we will be supported here.
I think it was Weejun that addressed the issue of wanting something besides AD to take our spouses. John is in the hospital, still awaiting a bed in a nursing facility. I know he's not ever coming home, regardless of the "skilled" care he'll be getting in order (as I've been told) to make him strong enough to come home. That's NOT going to happen. I know something will happen probably when he is transferred or soon after. When I visit him at the hospital, and even when he was last home, he is lethargic, sleeps most of the time and has nothing to say. Says there is nothing in his mind he thinks about. They're always coming in and checking his feet. I thought they were looking for swelling. He is always extremely cold. A lot of times his speech seeems slurred like he's had too much to drink. He says he doesn't have anything to live for and he feels useless. He seems very at peace. Hates to see me cry, still knows who I am. Always apologizing now for his past abuses of me and decisions he knows he made. So, there is some cognition there. He can't sit up without help, going to bedside toilet and changing his hospital gown is exhaussting to him. I want to talk to his doctors (and this sounds terrible) about not giving him any further transfusions or the Procrit (?) injections any longer. Also, why are we continuing the Aricept and Namenda? I don't want to prolong his life. Can't we just leave it alone and let him go? This is no quality of life. Antidepressants have been given, too, to no avail. This is AD. Sometimes I can sit with him for hours and he won't say a word. I intend to download the little book, "Gone From Sight". Maybe that will help. Am I a horrible, uncaring person? But, these are the things that go through my mind. I know I wouldn't want to live like this, if I were in his shoes.
Stuntgirl, I know this has been an awful ordeal and I have not been on this website much in the last week or so but how did dh end up in the hosp? My dh also has a dnr, living will. He knows I will be following his wishes but each time he goes to the hosp, I cry. I am strong any other time so I know allowing the dnr will be horrendous for me. He now has pneumonia and his speech has all but been lost. He moans mostly but sometimes I can understand a word or two. I know when he tries to say "I love you" but the bewildered look he has in his eyes really bothers me. I love him so much and even though this has been quite a roller coaster ride, I want him to be here as long as possible. I do not want him in painand I will respect his dnr wishes. I do believe there is a reason in life for everything and I am trying to find the reason for so much suffering and sorrow. My daughter and nieces and nephews so love the man. He was always the one that taught them how to drive, to show them the roaps about dating and was there for all of them whenever they needed help. He is like a father figure to my nieces and nephew. My only brother considers him his brother. He is distraught but needs to see him every week just to see for himself how dh is doing. I worry about the impact this will have on his brother. My sisters and Mom and Dad love dh dearly. They are all heartbroken about him. So you see, I do have alot of support. Other than my brother, however, my daughter and siblings and nieces and nephews are having a hard time visiting. They have all been there once but say thay need to remember him as he was. I understand it. Everytime I see a change in dh I wonder what it means. How much longer? He now has to have his liquids thickened and the speech therapist is watching him 4x a week. Therapy is beginning to work with him to keep his muscles from contracting. I always heard that most of them die from pneumonia. Is this it? Not yet. I don't think so. But everyday I go I wonder if he'll be there the next time I go back. We have been to 3 different emergency rooms and 2 different hospitals this year. He went from walking and talking in April to this. I feel like he dropped off the cliff. Why is this progressing so quickly? Is it God being merciful or is this the progression of EOAD? They say it goes more quickly when they are diagnosed early. I feel so weepy this am. I guess having a cold is not helping.
Kathryn, what a hard place to be in. I wish you strength to deal with it. Your dh sounds like a wonderful person, to be so loved. You need all that support now. It is amazing that he has declined so rapidly. Can I ask whether he's been taken off the AZ meds?
Jen, as Charlotte says just above you, whatever you decide you will be supported here. I think, in your shoes I woud be asking the same questions you are.
Thank you for responding to my awful question. I was talking a few moments ago with a neighbor who lost his wife recently. He was supportive of my thinking. His wife died of AD, Parkinson's, then Pneumonia. I think I will wait to talk this over in earnest with his doctors once he is placed in the nursing facility.
Kathryn0907...To be short, John has a severe type of anemia we've known about since before his return from Florida. He has to get frequent blood transfusions and an injection to help his marrow (which has more or less shut down its function) to make red cells. He had an illness at home, a GI bleed (that I didn't recognize as such) and he collapsed in the hallway going back to the bedroom after I cleaned him up. He went to the Emergency Room a few hours later in the morning and has remained in the hospital for over a week now. Waiting for nursing home placement.
Stunt Girl's husband was admitted to the hospital and diagnosed with a severe anemina that requires blood transfusions. They also found ulcers which had been bleeding. They found a multitude of other problems as well and the Doctors informed Jen and her daughter that his condition could not be managed at home,...and they needed to send him to a Nursing Home for extended care. The problem is that the Nursing Home insisted on a $10,000 payment in advance until Medicaide kicked in. Her problem is coming up with the cash ... so for now,he is still in the hospital, receiving blood transfusions, antibiotics, and nutrition through IV's. The good news is that their daughter has heard from the doctors that it is not Jen's decision to put him in a nursing home,and she understands that it has to be. Lawyers are working to free up a little cash from one of the accounts his children from a former marriage tied up - and removed from Jen's reach. I have to say that Jen is working through this amazingly. I believe reality has set in and she knows in her heart that she has done all she can do for him...and her questions about continuing all the IV's is valid. He is so far gone, and the hospital is keeping him alive.........which is what they are there to do. I dread when I am at that portal.
I know you all can see that Jen is working through this one day at a time, and has accepted the fact that she cannot cure John from all the physical problems he has.
Thank you NancyB.....I've gotten a little crazy, paniced and needy at times (not unlike EVERYone else here at one point or another) and unfortunately, it's upset some folks. I never understood that. But I am just glad to have you all here on my side. This and the alz.org sites are where I go for immediate help. That, and e-mail. Hope anyone who disagrees with me or takes issue with my matters for whatever reason will simply e-mail me, okay? (I know, I know...and 911, but I won't be needing that anymore for John)
((Jen)) I am so sorry about John's decline. But I am very relieved to know he will be going into a nursing home. You will be able to be his advocate, and I hope you will be able to find peace with the past. Jen, you asked some tough questions. Only you can answer them, but we WILL be here to support you in your decisions. ((hug)) Do talk to his doctors, try to figure out the need for each treatment, and if you want to continue them. Also, ask about taking him off the AD meds, IMHO there is no point in continuing them at the later stages. You need all the support you can find right now, i am glad to see you back ((jen))
Kathryn, I wish I had some words that could comfort you..... "I love him so much and even though this has been quite a roller coaster ride, I want him to be here as long as possible. I do not want him in pain and I will respect his dnr wishes."
You said it all in those two sentences. You want to hang onto them for as long as possible, but you don't want them to be in pain. Or in my case, my biggest fear, to reach the stage that poor Sandi's husband did. I see people in that comatose stage at the nursing home, I truly don't think I could handle that! Such a heartache, so difficult. Are you treating the pneumonia? I am so sorry he has declined so quickly, I can't imagine what you must be going through. Keeping you, your DH and your family in my thoughts and prayers. ((hugs))
"I think it was Weejun that addressed the issue of wanting something besides AD to take our spouses."
Actually, StuntGirl, it wasn't that I said I wanted something else, it was that I would like for Alz/dementia to change to a quick disease -- enough of this long goodbye business. Rather than various stages that last from 2-5 years each, I would prefer something that lasted 2-5 months each, or 2-5 weeks each! The next time dementia grabs hold of a loved one of mine, I would like to see it just zip along quickly and be done.
I agree. Every day I am reminded that he doesn't have a clue what day it is, what is going on, what he is doing. It's like we're sitting on a bench, waiting for the train. Just waiting. He can't do anything else.
Took the survey and was reminded of all he cannot do that he used to do,...when I checked off his daily activities... No reading, no hobbies, no TV, no radio, no music, no visiting, no clubs, no participating in housework, or cooking. He does nothing. All day and all night...just nothing. I take him with me when I have little errands to run...and he rides along, with no comments about what he sees or what I point out. He's just there!............... Yes, Weejun, this illness is a very slow, prolonged death sentence, which should be considered harsh and unusual and inhumane.
My husband and I are on the board of a local chapter of a national organization called Compassion and Choices. Ours is the only chapter in IL. The organization educates people about end-of-life choices and advocates for laws allowing for "Death with Dignity" like the laws in Washington and Oregon. This morning our board watched an excellent short video named "Dying Wish." It's about a man who has cancer and who, near the end of his life, decided to hasten his death by refusing to eat and drink. He was filmed throughout the 13 days it took him to die. He died a very peaceful death with family and friends around him. It was a very emotional video. We decided to show it at our next public meeting.
As we watched it, all I could think about was how my husband probably won't have the choice the man in the film did. The only reason for the "probably" in that sentence is that it's possible he will get another fatal disease and die from it before AD advances to the stage he can't make his own decisions.
It's so unfair. This disease is horrible! DH has very definite opinions about what people should be allowed to do as they are near death and about how he wants to die. I hope I'm able to make the right decisions for him as we go through the process of AD. A couple of days ago, he said to me, "People don't die from Alzheimer's." I didn't know he thought that. I'm not sure where I'm going with this. I guess just that I"m feeling really sad today.
Janet, you are right. This disease is unfair. But, so are a lot of others. This one that takes the mind and personality away and leaves the caregiver with the shell is definitely worse for us.
It is amazing how many people think that "People don't die from Alzheimer's" but THEY DO. A very long death, but death nonetheless. Alzheimer's shuts down muscles, deteriorates the patterns in the brain that affect speech, vision, comprehension, sleep patterns, nerves, neurons, and eventually shuts the body down. Most doctors write the secondary disease down as cause of death because the doctors see a stigma attached to this disease. I never have. They never did anything to cause this illness, and they can't prevent it and they can't cure it.
I'd better get off my soapbox now! <grin>
You are right when you say our spice don't have the ability to choose death with dignity. We can't choose it for them either.
Yes, Mary, to everything you said. I was talking to a very close friend the other day. I told her that DH was angry at me a lot. Her response was, "I didn't know AD could cause anger." I was amazed, because she went to seminary and has been a minister's wife for over 50 years. You'd think they would have had experience with dementia. I didn't have the opportunity right then to follow up with her, but I will! There sure is a lot of educating to be done!
Guess these comments will fit on this thread as well as any.
It seems to me that the Alz Assoc and all the other organizations involved with the various dementias should band together in their work to find treatments and a cure for all forms of dementia. Just on this board we have people whose spice were initially diagnosed as one thing and then another and some who are said to have a combo of Alz with FTD or something else. It's clear that the medical community still lacks a lot of knowledge and we know the general public doesn't "get it".
There is still so much unknown about Alzheimers and the other brain destroying illnesses that I can't help but think there must be a lot of duplication of effort as far as research and assistance to patients since there is not one organization covering it all.
I told someone this week that dementias, Alzheimer's and the others, are FATAL. She was the receptionist at the dentist office we went to because our dentist was on vacation. She was extremely helpful about all the things my husband and I needed so he would cooperate with the dentist. She works in the medical field. And she did not know that dementia was fatal.
I explained how it happened if you actually die from the dementia, but a lot of our LOs will die from the other things that are wrong with them first.
My DH is recovering from his second pneumonia in less than 3 months. He has no history of this prior. He is stage 5 and also has sleep apnea and type 2 diabetes, and is on insulin. With most other diseases, these would be complications or just considerations to treatment. With AD, it just gives me hope that I won't be here talking about him lingering in stage 7.
So often people say their LO is very healthy (well, except for the rotting brain) and they envision a long time before they pass. With other diseases (i.e. cancer), we would probably hope for a new treatment to be developed (and with reason to hope), and hope to think positively, and hope for pain control. But, the person would still be there mentally, emotionally (barring treatment effects or brain radiation). There would still be a connection, compassion, perhaps a physical connection also. My sister lived for 15 years after her breast cancer was diagnosed. Existing and new treatments allowed her to "live with cancer". She was there emotionally for her son's marriage and her daughter's first child. She continued to work when she felt up to it. It was different than what we will experience with dementia.
There won't be any treatments or cures for our LO's. I hope future generations will have it better than we have.
The VNA nurse who came today was taking the history of his "absence seizures" or petit mal or TIA or whatever. I said that he'd gone to the hospital with one where they gave him seroquel to shut him up.. but that normally I don't take him to the hospital for one. She said "when WOULD you take him to the hospital?" and I said if he broke a bone. She seemed slightly shocked with that and when I said "palliative care" He was, of course, sitting bright eyed and bushy tailed at the breakfast table, talking to her (a bit confusedly), doing what she asked, etc. She may think I'm a monster! But she has a lot of experience with Alz. so probably not!