It has been a while since I posted anything on this site, and although I do read every post, I have lost my humor, and all my laboratory experiments have failed...Even the lab rats have escaped, and have moved on. Audrey is now totally bedridden, and is under our 24 hr care. My son comes daily from 11-5, my daughter comes every night, and I am here the rest of the time. We are adamant about not putting her in a nursing home, and have decided that Hospice will not be initiated. We have 2 doctors who are personal friends, and have offered us their services, including housecalls if necessary. We feel that our home is the most desirable setting possible, and I could not wish for a better situation. She is getting the best possible attention and care, and I am convinced that nursing homes and hospice could learn a few tricks from us.
Something happened the night of June 14 which caused her to stop eating, drinking, using the bathroom and walking. She bounced back when we thought she was on her death bed. Last Wednesday, we went to her doctor's appointment and she wanted to give one last gift to Kim and kenzie. She wants to go ahead with the DNA testing for the PS1 gene. I almost cried at her thoughtfulness. She wanted to go out to eat after and we went to olive garden. She ate her minestrone soup, salad, and the tour of Italy. She was stuffed, happy, and excited to be out. We headed home and she crashed. That was the last meal she has really eaten with the exception of eating a few bites of spaghetti on friday. She was holding her own until Sunday night. Something happened that night because on monday, she could no longer talk. She was able to speak a few phrases and then mumbled the rest of the sentence. On tuesday night, something happened when I was there. I noticed her mouth slightly skewed and monitored her. She had a fever of 100.4 but was not in much pain. On Wednesday, she was now leaning to the left, her left eye red, both eyes yellow, her mouth drawn tight on the right side and laxed on the left. Her left arm drawn into her body. She slurs and has a hard time swallowing. She has not urinated in 50 hours, no bowel movement in 8 days. no major food since 8 days ago. She runs a little fever now and then. She has a heart rate around 120. Her respirations are around 20 per minute. She has developed thrush in her mouth and we will get medicine for that tomorrow. She sleeps a majority of the time now with only a few hours of wakefulness around 7 until 10. She is still very aware of all of us, and her memories are surprisingly strong. We are convinced that time with her is getting shorter and shorter, and that this horrible journey is about to end. I am also grateful that we have been able to deal with this horrific disease, and I now realize that it takes at least 3 people to be able to provide the necessary care. It is nothing that can be handled alone, and I think that even 2 people would have a very difficult time coping. I have been blessed to have such a great support team, and that we have had the opportunity to deal with this so effectively.
Phranque, I am so sorry to hear about your wife. I am so glad you have your two wonderful children to help you in this. I am at the beginning of this but sometimes wonder if I should move closer to my daughter. She would be a great help so your words about needing three people will be thought about. Thank you for sharing. I hope she is at peace and peace to you and your children.
Frank, I'm so sorry that Audrey has lost so much ground, and so fast -- I know how it hurts. I'm certainly with you on the decision to keep her at home, but I'd urge you to reconsider hospice assistance. They won't take over and prevent your caring for Audrey as you think best, but they'll be able to offer "comfort measures" in the form of liquid morphine or Ativan or whatever that you can use as you feel appropriate to relieve her discomfort. You're doing a great job -- keep it up, and keep your chin up!
Frank I am so sorry. We all know how this $%& disease will end but it hurts so much. I agree with GC about hospice. You will still rule the roost. They come to your home as a guest and will follow your directions.
Frank, I'm so sorry for your heartache right now. We all wonder how long until we face this. I hope, also, to be able to keep DH home through the whole ordeal. Thank you for sharing. I think it helps to know what's ahead even though it's so sad. God Bless.
i also add my sorrow that the decline is so rapid. and can only suggest that you have her on liquid painkillers asap to help her thru this process, hospice or not. the comments you made about no urine in 50hrs or BM in long times isnt a pleasant experience and she should have pain relief under any circumstances visible or not. we cant know what is going on internally but we do know shutdown isnt always easy. i would hope you could try another hospice agency as well, they are trained to see our loved ones thru to the end. divvi
Sorry about Hospice....I was vetoed on this one...If I did not have 2 wonderful children who spend 5 hrs a day googling every known symptom to man, I would probably beg for outside hospice....but I have the best hospice available anywhere.....My two kids could probably get their medical license, because each of us researches everything, and get at least 2-3 opinions, plus doctor opinions, nurses, friends, etc. We are very knowledgeable in this disease and its outcome. I feel very fortunate to be able to provide the most outstanding care possible, and to receive so much advice from so many truly professional people. And the results are a calm patient, who is still aware, pain free, and still able to prank us once in a while. The experience is immensely rewarding as we share feelings, heartbreaks, opinions, and form plans on treatment..... We spotted thrush last night, and I already have the swab sticks and medication in hand to treat it....we respond much faster than Hospice....I would still be waiting for the nurse to show up....and as far as the "comfort measures like morphine, she is highly allergic to it, and one of her regrets in life was to allow her own mom to get the morphine...that is the reason she is so against hospice.... We have her meds perfected and it is a minimal amount...only 3....risperadone for agitation, xanax for anxiety, and vicodin for pain....that is it....and now we will introduce diflucan for the trush...which will probably give her diarreah, which will cause further dehydration, which will cause more problems, which will cause more problems, which will cause even more problems....lol However, we are confident in our caregiving, and each of us plays a vital role in her care. If this were an Olympic event, we would score Gold Medals.
Phranque, you and your children have already received the Gold Medals, for the wonderful care you have given and continue to give. My thoughts and prayers are with you all.
Phranque,with a heavy heart I read what your going thru knowing all of us must follow the same path,while most of us won't for one reason or another share the inhome care that you an your family are able to give to their beloved mother an your wife,know that you are in our prayers thru this most difficult of times.While we all miss the humor,we all also understand and applaud your decision to "do it yourway",you have everyones admiration,when all is said an done you can know in your heart you went above an beyond,we should all be so inspired.
ol don-I have to disagree with you. Frank and his wonderful family have not gone above and beyond . They are doing what they choose to do. Audry and Frank must have done something wonderful to have produced such wonderful children. What an inspiration to us all. Now, finally, it is a time of peace.
bluedaze my reference to "above an beyond" is the care their giving compared to others such as myself whose LO is in ALF an arn't for one reason or another able to provide that type of care that others provide at home,sorry if I offened you it wasn't my intent
ol don-you most certainly didn't offend me. I had to place my dear husband in a dementia facility because I couldn't provide the care that Frank and his family are giving. My point was I don't think they feel they are going above and beyond.
Frank, I am so sorry your wife is declining so quickly. I am glad you and your children have the love and ability to care for at home during her final days. My love to you all!
My prayers are with you and your family. You are, indeed, so very fortunate to have 2 children who are so willing to sacrifice a bit of their own lives to care for their dying mother - most adult children these days are so wrapped up in their own lives and aren't willing to make any sacrifices for their declining parent. It sounds like all of you in your family are very intelligent and lovers of learning and lovers of each other - great combination - I agree, you and Audrey sure did a good job raising these two.
Please keep us all posted on these final days and beyond.
Frank...... I have so much I want to say, but I can't find the words..... I am very sorry to hear of Audrey's rapid decline. I am however moved to hear of the wonderful care she is getting from you and your children. I wish everyone could have the loving support you and your dear wife have. Amazing children you have, but I am sure you know that!!! I love to hear how confident you are in how well you are doing in her care, you are amazing!! You are all deep in my heart, thoughts and prayers ♥
I can't add much to what everyone else has said. My thoughts are with you and your family during this difficult time. You are blessed to have such wonderful children to help.
You did your best; you are doing your best; and you are doing what is right for you and your family.
I can't find the words to say how much I respect you and your amazing family. You make us laugh and you make us cry. Praying for peace for you and your family.
I keep thinking about Phranque's children. I wonder what he and his wife did to raise such fine, loving people. Apparently, I did not do what they did.
Frank - prayers for a pain free and peaceful time for however time is left. Not just for Audrey, but peace for you and your kids. I have been amazed at all you have done over the years not just for your wife, but others. You truly have a servants heart - a heart of love and compassion.
Jang..I am really starting to be suspicious that I might not be the father of my children...either that, or I have to wonder who the mother really was.....Or I have to investigate whether they were both swapped at birth....
Frank - still some humor. Genes mean nothing when it comes to how children turn out - it is what was put in as they grew. So either way - they are great kids.
Frank, I'm sorry to hear about your wife's rapid decline. How blessed she is to have such a loving husband and children. I am lifting you and your family up in prayers.
Frank, I am so sorry to hear of Audry's rapid decline. You and your children are truly wonderful and inspirational. Take good care, friend. You all have scored a perfect 10 in my eyes. BTW, thanks for letting that little bit of humor creep back in, I've missed it. God Bless!
Frank, I feel the same way that Diane does. I have missed your humor and I was wondering where you had gone to lately and never thought you would be going through all of this without us knowing it (but perfectly understandable) you were a little busy!!!!! I think you are right about the 3 people that are needed. I have always felt like I was doing the job of 3 people. I am doing this all by myself, his kids are not interested, my kids are not interested and we do not have any kids together. But anyway, I think your kids are wonderful and will be a great comfort to you and your wife through all of this. Please find some peace through all of this horrible situation and give your wife a kiss from all of us.
OOps...I think it was the bassinet we got at Kmart...the kids were at the dollar store, I believe./I just hope the kids never ask for a maternity test,,,
We all would love to do what you and your children have done. God has blessed Audrey with wonderful children and an even better husband. Only one of our children live close enough to help and the other 2 agonize over not being here....but have difficulties of their own. You will know that they will care for you when your time comes and you will not be alone. Praying for you and your family as well as a peaceful passing for Audrey.
Has the dr. said Audrey is stroking out? Things may level off. The human body can do a long of strange things. I pray that God is with her and helps her to be at peace.
It is probable that she is having tia's, and at times seems to be leveling out, but new problems arise...but I am so surrounded by wonderful people... I just received a personal call from a gynecologist who is calling a prescription for nystatin for thrush. Audrey's tongue is covered in white, and my regular doctor called in diflucan, which is used to combat yeast infections. So I now have both liquid and pill form, to kill it from the outside and from the inside....and believe it or not, this doctor took the time to pray with me .....I also have a pain specialist MD that made a home visit on Tuesday. How great it is to have the help from such wonderful doctors, who have involved themselves in helping me. I have yet to see a bill...but it might cost me a pair of shoes....... the female doctor loves shoes, and I will have to get her a pair.....lol I woke up this morning in a swimming pool at 5am. She has not eaten for a week, but gets plenty of fluids. She had not urinated in 3 days, and last night, the dam broke... There is not a depends made that can hold this much liquid, so it saturated the incontinence pad, her shirt, pillow, blanket. It is a rather challenging thing to do at 5am, and a king size bed is rather difficult to break down. I managed to lift her onto a chair, so I could begin the cleanup. She was rather agitated last night, and seemed to return to her former self. But I know that it will not be long until the next decline. As difficult as caregiving has been, I consider myself more blessed than most. I have nothing to complain about.
kidneys are not ready to shut down yet. If she will tolerate yogurt, give her a little as it will help the thrush somewhat. Sounds like Audrey is one strong gal.
Phranque, & we are all blessed to have you in our virtual lives! You are an inspiration to us & we thank you for keeping us in your loop. ((HUGS)) 2 U!
Phranque, I believe doctors tried both difulcan and nystatin on me in an attempt to clear up an oral yeast infection about five years ago. I had developed a UTI following hospitalization for heart bypass surgery, and the antibiotics they prescribed to combat the UTI evidently also killed off all the "good" bacteria in my gut that prevent yeast infections. The idea of food was disgusting to me and I lost quite a bit of weight over a period of weeks from not eating, and neither of the prescribed drugs seemed to clear up the yeast business for more than a day or two. The thing that I credit with finally curing me was a probiotic that a friend recommended -- Lactinex, available over the counter at WalMart, but you have to ask for it at the prescription counter, as they have to keep it refrigerated. (And the Lactinex pills actually taste good -- like Horlicks malted milk balls, if any of you are old enough to remember those....)