[font=Tahoma] [/font] It’s been a while since I’ve posted. A lot has been going on with my having more surgery, but I need your help regarding my mother’s situation with her foot/leg.

For those of you who don’t know the situation please see my story under: “Rescuing June”.

After my mother’s (age 90 with AD) hip replacement surgery last March, we found out she has only one blood vessel feeding her leg from the knee down. All others are completely blocked. She developed a Black Eschar wound (Very thick black scab) on the bottom of her left heel that won’t heal due to lack of circulation.

Mom's foot wound has been closely monitored by my taking her to the Podiatrist every week to 10 days. Her Podiatrist has been using a medication on her wound to soften it so it will allow him to debriede it (slough of some of the thick eschar scab off) each visit hoping to allow the medicine to heal it quicker. This could take up to 18 months to heal if it worked. Well, week before last, when I brought her in, her wound was softened to much and had a smell to it which the doctor said was caused by the medicine. He also told me this: "I have to be perfectly honest with you, it doesn't look good. It is border line at this point. I'm going to switch her treatment over to Betadine to try to dry up the wound, but if there is ANY INFECTION, then that will be the END OF STORY!! Meaning. . .amputation from the knee down!!"

While in Atlanta last week, I got a call from Mom's attending doctor at the Nursing home. He told me that they took a culture of her wound and found bacteria!! So they have started IV antibiotics and hoping that she will keep the IV in and not pull it out. He also told me that it was good that Mom's next appointment wasn't until the following week (this Wednesday) so it would give the antibiotic a chance to work. But the truth of the matter is that due to her poor circulation with only one blood vessel feeding her leg, it may or may not heal the wound. The problem with infection that doesn't heal is that it could go into her bone. That will be worse! If it goes into her bone and it could infect her entire body and she will die!

I realize that I have been fighting amputation for a long time. But after speaking with some other people, the alternative of her suffering with an infection would be a prolonged painful death! Something I don't want to put her through either.

Her doctor also told me that Mom will also need to have cardiac clearance to have any kind of surgery too! But she did get clearance for her hip replacement. . . so I don't know. . .

Mom has an appointment with her vascular surgeon (he's also been monitoring her veins) on Wednesday morning and then with her Podiatris on Wednesday afternoon. I did ask him about the bypass procedure and he told me that that procedure was WAY more invasive and painful than even an amputation. Between the two doctors, I'm sure they will come up with their recommendations on how to proceed.

No good options for Mom right now. She’s like a child and depending on me to make all the right decisions on her behalf and take care of her!! And it just kills me (having trouble sleeping!) to have to come to this point in her life! I just don't know how she will handle an amputation in her state of mind and health. I guess what we need to consider is which is the lesser of two evils that will allow her quality of life and not quantity of life.

I am in DESPERATE need of advice ASAP! If any of you have been through a similar situation or have any opinions or suggestions, it would be greatly appreciated! I have four brothers and sisters who, although well meaning, don’t have any answers for me and are leaving this basically up to me and Mom’s doctors.

Please pray for Mom.

Thank you,

Connie
Orlando, FL

Oh Connie, this is a hard one to answer. There are so many more answers I think you have to find out before you can make a decision.

First I think you need to find out if the antibiotic is working. If it is, then hopefully your decision will not be the same as if its not.

Then I think you need to find out if the infection is in fact already through her body and in the bones. If it is, then the amputation would not be possible I would imagine, and not do any good.

I would then find out more about the bypass procedure. Even though it may be more painful, an amputation I would think is a very long envolved surgery with I'm sure many risks also. I would ask them risks and recovery time for both, write them down, and decide what you would be more comfortable with mom having.

I would imagine, that at your Moms age and health, any of the options are going to be prolonged and painful. I would really discuss this more at length with the doctors. If she wasn't an AD patient, and also 90, then I'm assuming the odds for any surgery would be better. But Connie, in all truthfulness, it seems that no matter what you may choose, that it will take a toll on her body, and her chances will not be good with any of the procedures. Ask the doctors what they would do if it were there Mother. You may get a little more of an honest answer, and then can go from there.

As I'm writing this, I have my own mother in mind. When I thought Mom had another AAA, I would have had to make a decision also that would possible involve more suffering, but also the large possiblility that she would not make it through another surgery, or that she would, and the suffering afterwards would also be unbearable. So in a situation like this, I'm afraid there may not be any easy answers. Try real hard, knowing your Mom as well as you do, to think the way she may have and what decision she may have made without AD. I've been doing this lately with many medical things that I'm going through with mom, and it seems to make decisions a bit easier to live with.

Thinking of you, and praying that you can come to terms with whatever you decide, and supporting you in your decision.

Jackie

Oh Connie, I am so sorry that it has come to this. Unfortunately this is your decision to make. All I can do is share my experience with you.

As you know, I had to make this decision with Helen. When her hand turned black I had to decide whether to have an amputation or let her die. I chose to let her go. She was however already in the end stages of this disease and had no quality of life left. At that point I felt that the only reason to keep her alive was for me and not for her. I did what I thought was in her best interest. That's really all we can do.

Do I feel guilty about it? You bet I do. To this day I often say that I let Helen die. To make a life or death decision for someone else is never going to be easy. And yes, it was a painful death and heart wrenching to watch. However, if I had it to do all over again, I would probably do the same thing. As much as I wanted to keep her with me, she was already gone in a sense.

Is your mom still able to enjoy life? Is there still enough quality there that she can handle this? Your mind has to be solely on what is best for her. It's hard not to think of what we want but that's what being a cargiver is about. As long as you believe that what you are doing is in her best interest then whatever you decide will be right. There is no wrong decision.
((((HUGS)))) sweetie

Thank you Jackie and Lori! Your words are very helpful. Just knowing you are there to help me through this is SO appreciative. I am so grateful to you both!

Jackie,

The infection has not yet reached her bone - they just now found bacteria in the tissue in her wound. I'm sure they will take x-rays on Wednesday to determine this. If it has gone to her bones in her foot, then yes, amputation is the only option to avoid it reaching the rest of her bones and a very painful death! I think the doctors don't feel my mother could handle the bypass operation as it is VERY invasive with a LONG painful recovery. And they may not even do it if there is infection. I don't think they will do any kind of surgery (other than amputation) when there is any kind of infection. Remember with me and my Diverticulitis, I had to have IV antibiotics for a week before they would operate. I have also thought about what Mom would want with regards to her surgery and I think she would say: "Do whatever is the easiest" But I also know that she would NEVER want to be in a NH and would just want us to let her go! She is not afraid of death, but knows that she will be moving on to another level. She's always told me this.

Jackie, I know that you are going through a lot with your mother as well and my heart goes out to you too! Please know that I keep you both in my prayers. As we've discussed previously, as hard as it would be for us, I sometimes wish there were an easier "way out" for our Moms with little or no suffering. I know I would want to go.

Lori,

I can only imagine how difficult it was to go through what you did with Helen!! But what you did was the absolute gift of love to Helen by releasing her from the pain of what she was going through in this life. I'm sure that if it were you, Helen would have made the exact same decision.

Though with Mom, she is still enjoying life. She is only in about a Stage 4 (possibly 5) of AD and loves going out with me shopping and out to lunch in her wheelchair. She still carrys on conversations with me - most of the time, she makes sense. Other times, I know that she is trying to tell me somthing, but can't remember the right words. Although she wears Depends, she still goes to the bathroom and tells me when she needs to go. Although she doesn't know what items are on the menu and asks me to order for her, she still loves to eat regular food! If not for her foot, she would not be in a NH and would be in ALF for Dimentia. So that is why making this decision is so hard!! She isn't at a late stage of AD or otherwise at the end of her life. But her foot may put her there.

I know that any surgery will through her back further into her AD as did her hip replacement. I just have to keep asking myself: "What would I want?" It's SOOOOO difficult!

Connie

Hello Connie,

I'm so sorry for the difficulty you are facing with your sweet Mama. Wow, that is a big decision you have to make. Sometimes, the decision gets made for us because the doctors give us the facts and there is only one option but it will still be very difficult.

One thought I had was to write down each question you may have and make sure at the Dr.'s appt. that those questions get answered. I write down the answers during the visit so that I can go back and remember what the Dr. said. Also, is it possible you can take a trusted friend or family member with you to the visit to help remember what the Dr. said? Two ears are always better than one and each of us hears things differently. Your friend could even do the writing for you if you wish.

May the Lord give you great wisdom during this time,

~Kelly~

Dear Connie,
Please know that you and your Mom will be
in all of our thoughts and hearts this week.
Keep us posted.
God Bless.
Carol

Well Connie since your mom still has quality of life, that makes the decision harder. Although it wasn't an amputation, I did have Helen go through hip replacement surgery when she was in stage 5 of this disease. Her doctor actually didn't want to do it because of the AD but I was willing to take the risk to relieve her pain. Six months later we were on a cruise to Alaska.

As I said though sweetie, this is your decision and no decision is the wrong one. We will all support you in whatever you decide to do.

Hi Connie,

Have you asked the doctor about oxygen therapy using a hyperbaric chamber? This is what they use to treat diabetics' wounds that take very long to heal. I've heard amazing things about this. Also, what about direct injections into the site of infection. Systemically the antibiotics are important, but localized injections I've read are important as well. If it comes down to amputation, I have to say life over limb. Please let us know how this plays out.

Connie,
Whatever you decide, you will make the right decision. If Mother is only stage 4, I would probable opt for surgery if it were me. Does she know what is going on?

All the suggestions above sound like good advice. What Aitan said sounds pretty good. He seems to always be here to give us the inside scoop on things. He always comes up with some pretty good suggestions.

I'll be saying some extra prayers for you and Mother.

Thank you all for your kind thoughts. I have written to my brothers and sisters regarding Mom's situation. I've asked that they each call me to tell me their thoughts. And after further discussion, I think they are on the same page now that it is Quality of life over quantity or "Life over limb" as Aitan said it. AND. . . my sister in-law also mentioned that a diabetic friend of hers also had a similar problem with possible amputation of her foot and did the hyperbaric chamber for several months and saved her foot! She only had to have her small toe amputated. So I will DEFINITELY bring this up to her doctors tomorrow! Thanks for that suggestions.

Another concern that you brought up is if I have discussed this with Mom. Each time I take her to see one of her doctors, she asks: "Why are we here?" "What is he doing to my foot?" "What's wrong with my foot?" "Why does my foot hurt?" And she will ask me these same questions several times . . . .So, I'm not sure she understands. One just never knows what part of their memory is there to allow her to remember even what a wound is. Since she doesn't remember what say. . Spaghetti is on a menu. . makes sense that there are some things she wouldn't remember or understand when it comes to her health.

Question is, what do I say to her? Will it upset her too much if I ask her what she thinks? Will she even understand? I guess I'll let her Podiatrist explain this to her in "his way" if she needs to have her leg amputated. I'm not sure she will understand as she has her "canned answer" in the past has been "Do whatever is the easiest". . .bless her heart. . .Never wanting to be a burden!

Lori. . .I am SO glad you got to take that cruise with Helen! What a wonderful gift to you both!

I will definitely write down all my questions and my husband said he would come with me so I won't have to handle this alone. Thank Goodness!

Praying for you and your Mom Connie!

Kat

At 5:45 AM this morning, we received a phone call from the NH saying that Mom had removed her PIKK IV! Not a real big problem, but they needed to inform us. Since I was going to pick her up to take her to her doctor's appointments anyway, they decided to leave the IV out until I brought her back!

SO. . .OK! GOOD NEWS!! Mom's first appointment was with the vascular surgeon who put my fears at ease! I told him what her Podiatrist had said about infection and amputation. He told me that Mom's wound has not gotten worse and basically stayed the same size, which is good. He said that bacteria does not necessarily mean "infection", which he did not see. He said that the wound would have to have gotten into her bone in order to warrent amputation. He said that before amputation, he would try the Angioplasty to try to open up the other two blood vessels feeding her leg. But she wasn't to that point yet. When I mentioned the hyperbaric chamber that Aitan suggested, he thought that it was worth a shot and referred Mom to a hyperbaric chamber wound care clinic and set up an evaulation appointment for Friday. They first need to run tests on her oxygen levels in her leg to see if she is a candidate for this procedure. THEN. . if she is, I will need to take her there for a two hour session every day or at least 5 days a week! YIKES! But hey. . .she's worth it! When she later saw her Podiatrist, I told him what the vascular doctor said and he was also happy to hear this as well and will support any care Mom gets from the wound care clinic. So, we'll see what they say on Friday.

On a sad note, I have to tell you what Mom said today. When I picked her up this morning, she was especially thrilled to see me - like a child when a parent picks them up at Day Care. As I wheeled her down the hallway, she said: "Please don't ever bring me back here again!". Then as I opened the door to the warmth of outside, she said: "Ahhhh FREEDOM"! But wait. . .it's get's better. . .If that weren't enough to make me feel bad. . .! The entire day seemed very confusing for her. . .asking where her keys were, where her car was, why we were at the doctors. . .over and over and over again every 5 minutes. THEN. . .as I was driving her back to the NH, she said with tears in her eyes: "I hope your kids aren't too ashamed of me" . . .I said: "Why in the world would they be ashamed of you Mom, they LOVE you"! She said: "Because of me being in jail" I said: "JAIL?? You aren't in Jail! Why do you think you are in Jail". . .She said: "Because of all the poor people there". OMG!! As the tears. . .(and the overwhelming GUILT) came over me. . .I had to pull the car over to a parking lot. I took her in my arms and said: "Mom. . .you are not in Jail. . .you are in a rehabilitation center with doctors and nurses taking care of your foot. The other people there are also sick and need special care just like you." She asked me how long she needs to stay there and I told her "until your foot get's better" I also made her promise she would not take her IV out again because it had antibiotics to help her foot heal. I know she won't remember. . .but at least somewhere she may. . .But this entire conversation about jail, etc. . .just got to my heart and I just wanted to take her home with me. But I knew that I coulldn't and she needed to be there with the nurses taking care of her.

Mom also told me several times during the day how lucky she was to have such a wonderful daughter like me taking care of her and that she loved me very much as she kissed my hand (as I was pushing her in her wheelchair or sitting beside her in the doctors office!) ABSOLUTELY PRICELESS!

Thank you ALL for your prayers! Thank you too for being here for me! You are ALL such God-sends to me and I have told Mom's doctors how much your support has helped both me and my mother! God bless you ALL and a HUGE heart-felt "THANKS" from the bottom of my heart!

I will keep you posted. . .

Love to you ALL,

Connie

Oh Connie, what wonderful news about your mom's foot. Praise God! I will continue to keep you both in my prayers.

As for the conversation with your mom, how heart wrenching that must have been. You handled it very well. Your mom IS lucky to have such a wonderful loving daughter.

What a beautiful picture of two people,
mutually blessed with each other.
Carol

Connie,

So glad to hear the wonderful news. Seems like things may be looking up for your Mom. Everything sounds much more positive than it did a few weeks ago. And glad to hear that amputation would be a very last resort.

I know that must have been heartbreaking for you to hear your Mom say she was in jail. They do come up with things like that. And although they really don't realize things, it still is heartbreaking to hear that and think, gee, is that where she really thinks she is?

My mom also has come up with some pretty strange things. And although we shouldnt' pay attention to those things, you still take it to heart, and hope they really don't believe things like their in jail.

But right now, the most important thing is that things are looking up for you Mom. Just focus on that, and that will get you through anything else. Seems like when the health things improve, we can take all the other stuff with a grain of salt.

Keep us updated as soon as you find out more. Thank God we have this forum as so many on here are so well informed with different things that we may not think of. I'm glad Aitan suggested to you about the chamber. I have never heard of that for what your mom has, and its good to know things like that in case our loved ones, or even ourselves may need it one day.

Jackie