Haven't posted in a long, long time. DH had his required annual check-up. He has been in an AF for almost three years now. (It's hard to believe how long, time sure does move fast). In any case here are the words from the AF doctor who had him brought to his pc doctor:
"We took "DH" to Dr. B Wednesday for his required annual physical. It was a chore. Has not been out of the facility and into a car for a long time. So, the newness of the activity of course created some stress. He got in the car fine, but refused to come out once we got to the doctor. It took three people and a lot of convincing and talking to make it happen. The return back to RH was smoother and it looks as if he enjoyed the ride."
He is in late stage 6, doesn't recognize anyone including me, cannot move from chair to bed, etc. without assist of two people, is incontinent, on respirdone but still strong enough to resist anything he perceives of as scary. (I guess).
The doctor's nurse called me today to say that Dr. B wants DH to go to a kidney specialist. For what purpose I ask? To address his failing kidney function. It's at Stage 5. I then ask the nurse (who was very, very nice and understanding) what would the KS do? She replied, put him on dialysis! I told her that I would not subject DH to such a procedure in his condition and would call for hospice to manage any pain, etc.
She told me she would tell the doctor but that she also completely understood my feelings about it. Still, after hanging up I felt guilty. I know he could not tolerate the needles, the transport, etc. and that he is not a good candidate for this process with advanced AD and age (85).
I searched online and found this which helped me feel a little bit better about my decision. DH meets most if not all of these criteria. So why do I feel so terrible??????? I hate this disease and having responsibility for another person's life, basically.
The American Society of Nephrology and Renal Physicians Association recommends that patients, families and physicians consider forgoing or discontinuing dialysis for ESRD patients who have a very poor prognosis or for whom dialysis cannot be provided safely, such as the following:
• Those whose medical condition would interfere with the technical process of dialysis because the patient is unable to cooperate (e.g., an, an advanced dementia patient who pulls out dialysis needles) or because the patient's condition is too unstable (e.g., severe hypotension/low blood pressure).
• Those who have a terminal illness from non-renal causes (acknowledging that some in this condition may perceive benefit from and choose to undergo dialysis).
• Those with Stage 5 ESRD older than age 75 years who meet two or more of the following statistically significant very poor prognosis criteria:
1) clinicians' response of "No, I would not be surprised if this patient died within the year." to the surprise question;
2) significant co-morbidities or secondary conditions;
3) significantly impaired ability to function or care for self (e.g., Karnofsky Performance Status score less than 40); and
4) severe chronic malnutrition (i.e., serum albumin less than 2.5 g/dL .)
it would be my choice as well to opt for pallative care thru hospice maggieroni. i watched DH brother go thru dialysis without dementia and it was just horrible to watch. we knew then and there such treatment would never be an option for my DH. there are some who choose to do any and all life sustaining procedures for their loved ones, but in this case, if you have a health directive or know your spouses choice for themselves in this type of situation, i would abide by their wishes. most of us do not want sustained life interventions if the outcome is going to be the same with a terminal disease. hope you find peace in your decisionmaking. its never easy. we do as we think they would want. divvi
I would make the same decision as you have. It seems to me that it is nature's way to ease him out of the misery of dementia. I hope that you will find support from your family and friends and drop the guilt. His age, his advance stage 6 (which can quickly slide into stage 7, plus dialysis would be a nightmare for both of you.
Under different, but similar conditions, I made the same chopice. I knew his wishes; and we had a DNR in pl;ace.I had/and still haveno guiltabout refusing open heart surgery to replace his Aortic Valve. Tghe Cardiologistagreed it wasn'tfeasible given his dementia. He expected us tostill have aboutayear. We lost him in July (1 month(. However, Palliative care made it apretty good month and when he4 did pass, the heart failure took him quickly and very peacefully. Considering that Dementia deaths can be long and drawn-out, we were blessed.
WE do our best to care for them while they're with us, and this is another part of that. We honor their wishes, and we ease their way down the last part of the journey. As hard as it is, you are being the best of Caregivers.
I've seen several people write about experiences with dialysis and dementia--at least one I think was here and will hopefully read your post. One started dialysis but her husband found it upsetting and confusing. The other I think decided not to start. A cousin of mine is a pallative care doctor and talked about a patient who refused dialysis. He lived for almost another year, comfortably. They start dialysis well before the loss of kidney function is immediately life threatening.
My mother died of kidney failure at the age of 84. She was tired of living and I think she was intelligent enough to explore the easiest way out and decided that kidney failure was it. I got a call from her doctor in early September 2008 saying she had refused antibiotics for a kidney infection. I went and got the antibiotics for her and to this day, I don't know if she ever took one pill. For my conscience I had to get them. Beyond that, like it or not, it was her choice. On September 27, she ended up in the hospital and by October 26, she was gone. It was exactly how she would have wanted it to be. There was no pain at all. One month's time and it was over. How I wish for something similar for my Lloyd.
Thank you all for your thoughtful comments. Thank you, Linda for sharing your Mom's experience. I hope there will be no pain or discomfort for DH, he has suffered enough already stuck in this terrible disease.
One has to wonder about Dr. B's compassion, understanding and respect for your DH's condition. To recommend dialysis for an 85 year old with late stage Alzheimer's is in my mind borderline malpractice, to say nothing of total disregard of cost / benefit implications as set forth by the Renal/ Nephrology Assoc. It would be a terrifying torture for your DH to travel to a center and the stress of the procedure several times a week would most likely be more than he could tolerate based upon your description of the trip to the PC's office. You wouldn't be human if you didn't feel a modicum of anxiety over the decision to elect Hospice care. I'm just amazed that your MD didn't suggest it rather than a referral to a KS. In my opinion you made the only decision possible under the circumstances.
marty is so right. These decisions are so hard and so heart breaking, but we have to think of what is best for your dh and not our feelings. The hardest thing I ever had to do for my dh was when the hospice doctor told me my dh had only a week, two at the most to live. And, if I withheld food and water he probably wouldn't last a week and he would not know the difference and would not be in pain. Well...that is exactly what I did and he was gone in less then a week. Even one of the helpers that came daily, ask me how I could do that...I told her because I love my husband and I know he wouldn't want to be like this if he knew what was happening he would rather it be over as soon as possible because there was no longer a life worth living.
We had to make that decision for my father. The doctor was quite blunt about what life would be for my 88 year old father who was having total kidney failure among other problems. We considered having him on dialysis while in the hospital to see if his kidneys would recover, but we ended up putting him on hospice. He had made his wishes about being in a NH and about life support for many, many years.
My Dh has told his sons that he wants to check out. But it will be so hard for me to let him go. It's such a void when they have gone. I admire those of you who took that route though! And I don't want him to go through agony.
I cannot help but bring my sister in to this conversation. No she had cancer, not AD. however she was in palliative care, and drugged heavily , then no water and food. Thank God she passed in only 4 days. It is agonizingly heartwrenching to watch this, but when it ends, for me, it was so peaceful and beautiful and a huge relief.
Thank you Marty for expressing what I dared not feel about the doctor's recommendation to take him to a specialist. I guess it's all about lawsuits. He has not called me back so I guess he does not disagree with my decision. I have yet to ask for hospice but I am getting ready to cross that bridge. Thanks to all.
Maggie...you will love Hospice. The main thing I liked about them besides the wonderful care and concern they gave my husband was the fact that I knew I had a telephone number to call 24/7 and I knew that there would be a nurse on duty to answer my questions and/or send someone to my home to be sure my dh had the proper medications, the nursing care he might have needed or even send a doctor if the nurse felt that was what was needed. You are never alone with the care your dh needs...you always have hospice that is true about going to ALF too. They will visit him there also.
You need not feel quilty about anything. I am sure you have done your best for your dh. Each spouse and each caregiver have different problems at different times and all that can be asked of us is that we do our best. All these end type decisions are difficult...but, quilt on your part should not be part of that procedure. Hugs and more Hugs. You will do fine.