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    Out of the loop!
    gottagohome posted:
    I had thought that I posted a comment earlier this week, but I guess I did not. It has been a month since I had "spoken" with the group and just wanted to apologise. I truly appreciate this site and all of your contributions. Guess I got too tied up in the hectic day to day duties! I am anxious to know how you and your loved ones are now. My friend Ron did much better when we resumed the Namenda, even though he is losing ground each week. A lesson learned from this! He fell twice this week, always hitting the same eye. So after a waste again at the hospital of 9 hrs, a cat scan, being pumped with iv's of Ativan and Benadryl, we are back to square one. I stayed the night and he finally could sleep. The ironic thing was the that we weren't told they were waiting on a urine sample, and when I called for help when he needed to go, they never sent anyone to assist. I can now say I think I know how to use the urinal, mess and all! Hours later I said he at least needed water to assist him in the to need to go. No uti, didn't even clean the the head cut. It took the nursing home's call to move things along. They agreed with his dr to admit him as they were going to put him on Depacote and the nursing home and dr had requested an evaluation. (He was so drugged and could not stay still on the bed for the 9 hrs that they said he could not go back to assisted living, ever)! Eventually, I drove him back to the home, even though he could not see nor was steady to even stand. they said he did not meet any criteria to stay in that room by the nurses station the dr promised us. But it took 3 more hrs of suffering and thrashing from the iv's, for the med to reach the emergency room from the in house pharmacy. (My daughter had worked in this pharmacy while in college, I and I should have known what to expect and was glad she is out of there)! I finally agred to sign a DNR and signed papers for hospice as he does qualify, yesterday. My point in sharing this experience is that evidently it is not safe to allow an Alzheimers patient to be sent to an emergency room, because they are left alone with no one checking on them for an entire day. Luckily, I was with him the entire day. It is cruel and unsafe, let alone frightening for the patient. These persons are not treated with care and respect. I now know this is the norm not the exception. It is imperative that they receive care, especially when there was a head injury. Once again, I feel it is another case of elder abuse. We were lucky, but I am not so sure everyone is. I just feel that this illness is not treated with the respect it is due. Best wishes to all.
    Judith L London, PhD responded:
    Hi Again,

    So glad you were there for your friend Ron. There are some geriatric physicians who make house calls. If he is on hospice now, the hospice staff should be checking up on him. Regrettably, the emergency room situation is not uncommon for those with Alzheimer's.

    It's disheartening to know that many medical staff are so ignorant of treating people with this disease with the same respect that every patient deserves.

    It must have been so aggravating for you to see him go through this, and it's great that you are there for him

    gottagohome replied to Judith L London, PhD's response:
    Hi Judy! Once again, so wonderful hearing from you. We did survive the hospital experience last week, I am proud to say. It was a rough night, as Ron had been awake from 2am and didn't go to sleep until 10 pm.and I stayed the night. The Hospice started in right away. Within a few days I had spoken and met with 4 people. Today the nurse was able t check him over, without the resistance last week She is very concerned about the weight loss, as it is more evident each week. He just walks but hasn't fallen again. The nurse is concerned as t why he is on the Haldol as well as the Serequel. She wants to address this, but since it's only been her case for a few days, she doesn't want to rush challenging the dr about this. That she thought the same as I on this issue, is hopeful. Yet she doubts that the Namenda is of any help as well. And that the decline from that she thinks is hte rapid decline of his condition. I have been told to make arrangements now. I have finally accepted that the family doesn't care and I know Ron would not want their involvement at this point, anyway. I have praised this group here to friends. Between you and Hospice, that is starting to ease the pain. I thank you. There are also several workers at the nursing home who really care for Ron, as well ! Hope to hear how Kathy, Carol, and Dave are doing. Deepest regards, Shelley
    cjh1203 replied to gottagohome's response:
    Hi Shelley.

    Ron is so fortunate to have a friend like you, especially if his family has abandoned him. We all can only hope to have someone in our lives like you.

    I can't say enough good things about hospice, and I'm so glad that they're working with you and Ron now. They can relieve a lot of stress from you, and help Ron feel comfortable and cared for. Not enough people take advantage of the caring support hospice can offer -- they made a tremendous difference in the lives of several people I cared about, as well as the families.

    Best wishes to you. I'm glad you have such good help in your fight to make this time better for Ron.

    davedsel57 replied to gottagohome's response:
    Hi, Shelly.

    I want to say how much I admire you for being such a good friend to Ron. It saddens me that his family just does not care. I am glad to read he has you and some of the nursing home staff to take good care of him.

    Good to see another post from you. Keep us updated.
    Click on my user name or avatar picture to read my story.

    Blessings, Dave
    2010guardian replied to gottagohome's response:
    Hi Shelly
    It saddens me to see that Ron is declining so fast. I am so glad that you are getting some relief and support from Hospice. You are such a good friend and you can be sure that you will not have regrets, because you have loved and cared for Ron all this time. You have brought happiness into his life with your visits and rides and taking walks. I pray for your courage and strength during these times.

    I'm amazed at how well Ken is doing. He is so busy outside. A 13 yr old grandson is building a bike and Ken sits in the shop watching him. We are shifting things from storage and now it's all over the patio. He keeps busy going through things to see where to put them. He decided the red 'barn' shed needed paint, so he went to the store and bought paint. Now he's going through all his painting equipment to make sure he has everything. This will probably be a 'grandchildren' project. I don't think he realizes how much he is moving around. I'm trying to enjoy this good activity but he sure is wearing me out following him. That is a blessing.

    I'll keep both her and Ron in my thoughts and prayers.

    gottagohome replied to 2010guardian's response:
    Hello friends! I am sorry for not keeping up lately. I find myself writing, then deleting my post. Times have been rough here. Ron has been failing very quickly. It hurts to be told repeatedly how everyone can tell. One lady passed last week. Now they wonder if another lady or Ron will be next. I got the dr's nurse to talk to me today as the 1.0 Ativan keeps him out over 9 hrs, then it's time for more or the Serequel. I try to feed him some Dr Pepper and Steak and Shake, that is all he liked for years. But then he's back to sleep.I was concerned that he wouldn't have fluids or food if he's out all day. So the nurse, NOT HOSPICE, sent the order to cut the Ativan to .5. I dare that Hospice nurse to cross me again. I asked for some waking time for US, while he knows me, since he is in the last days. The aides even come in and cry, and mention that it won't be long. I lost my friends (and still my daughter) over this. I never would alienate them in their time of need, as they know, so I am shocked. Since nobody cares, they don't know how hurt I am facing this alone. This is common I know, so much like divorce, retirement, other illness, etc. But I don't think I can forget this right now. I didn't ask for anything, but a word of interest would have helped. Sorry this was about all my situation,tonight. I guess I will call a funeral home Mon. but maybe have him cremated since the family is here in town and never even asked where he was, It will be a year tomorrow, that he entered the home. I pray the falls won't be as bad with the med change. More than anything at this time, I certainly wish there were support groups LIKE YOU GUYS for those that are not just in the discovery phase. I see the need with many wives there.I'll never know the depths of each of yours pain and stress, but I am your friend and will still love hearing from you at any time. Sending support and the best of wishes possible to all! Shel
    cjh1203 replied to gottagohome's response:
    Hi Shelley-

    It's so sad that you and Ron have been going through this awful time, and I know that the absence of your friends and family makes it so much harder.

    I wish there was something that could make this easier for you, but I just don't know what it might be. You have been, and continue to be, such a loving, caring support for Ron, and you both deserve to have a smoother road.

    One bright spot is that Ron still knows you. That must make a big difference to you, and bring him a lot of comfort.

    I hope you haven't felt you need to delete your posts because of us -- feel free to say anything you need to. I think everyone will understand.

    Thank you for letting us know what's going on. I've been thinking of you.

    2010guardian replied to gottagohome's response:
    Dear Shelley,
    I do understand about starting to write and then deleting the post. I did that a couple of times. We as caregivers do need support through the trials that we are living.

    I do hope that you will have more time with Ron in his awakening hours. Such hard times. I can't believe that his family and your family do not understand what a loving and caring person you are. Ron is so fortunate to have you and I know at times he has realized how blessed he really is.

    Ken has just been diagnosed with upper stage 3 of chronic kidney disease. This was such a shock to me. He was in Stage 1 in 2009, Stage 2 in 2010, Stage 3 in 2011. and now he is almost in Stage 4. Stage 5 is when he will need dialysis. He is diabetic and has hypertension. I can't believe, with all the medical care he has been getting, that the doctors (3) have let this slide. We went to a dietician to get advice on what to do or avoid. He will see a diabetic counselor tomorrow. I watched my brother live and die with this problem. So it really depressed me.

    I really don't expect to see Ken in the end stages of alzeheimers. He is having a little more problem with talking, and focusing in the mornings and sometimes it lasts all day.He is now sleeping more. He slept 4 hours this afternoon. The kidney disease will make him weak and tired also, so he is hit from 2-3 sides of side effects.
    With his newest problems, I have been studying information from Web MD and he has now received information from the kidney center.

    My prayers are with you and Ron in these hard times. Keep us posted and just talk with us anytime.

    Your friend,

    Judith L London, PhD replied to 2010guardian's response:
    Dear Shelley and Kathy,

    You both are going through such hard times. It's wonderful that you keep moving ahead, doing the next right thing at every turn.

    How hard it is to see the ones you love struggle and suffer so.

    Be gentle with yourselves during this troublesome time,


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