posted on April 29, 2002 11:33:33 AM new
My dad is dying. Although I'm 50, I've never experienced death before. Yes, I've had grandparents die, but it was so removed it just wasn't like this.
My Mom told the hospital she would allow resusitation (I know that's misspelled). I understand her decision, but I wonder how much more his body can take.
He won't eat, she has to coax each and every bite, and I've seen him refuse any thing except a canned protein shake. He now weighs 129 lbs, that's a loss of 100 lbs. He has two bedsores that are deep, to the bone. They tried to do a MRI on the bone to see if the infection had spread to the bone, but can't get him in the machine because of his legs being drawn up.
He sleeps all the time. I think a lot of the time that's he's laying there listening to us, and for that reason I won't discuss things in front of him. If I take his hand and speak to him, he'll open his eyes and speak intelligently. So I know his mind is still there.
The blood test showed bacteria in the blood. When mom used the word "septic", I looked it up on the internet along with "infection" and in the articles I read, "septic infection" was used interchangeably with "toxic shock syndrome" and indicated that it is fatal quite a bit of the time.
I am no longer telling my sister not to come. I called her yesterday and told her everything I know and told her to make her own decision. If she came now it would mean pulling her kids out of school. I know the last thing mom needs is my sister and her insecurities and her whiney 6 year old. But I'd rather mom be mad at me than my sister not forgiving me if dad died and she didn't get to see him.
I'm usually the strong one in the family, but today, I just can't quit crying.
posted on April 29, 2002 12:10:00 PM new
Hi Valleygirl - Losing a parent is so difficult and it sounds like your Dad is ready to go. Your sorrow is normal so cry until you have no more tears and then cry some more. Even though he is still in this world, it seems you sense he's going to leave you. Let him go. Stay by his side as much as you can and keep hold of that hand. He will know you are there. I don't know about your beliefs but I think he is going to a better place where there is no pain, no hunger, no suffering.
Keep the faith and give your Mom and Sis lots of hugs and take care of yourself.
posted on April 29, 2002 12:30:52 PM new
Wish I knew what to say, but I don't. My dad died last August. My sister kept me in the dark and told the hospital not to release any information when I called. The odd thing is that I "knew" when he passed away (a feeling I had), and I later found out that was indeed the time he passed. You must call your sister. It's the right thing to do.
I did call my sister. Sorry for the double negative. Up to this point, I was telling my sister (who lives on the other coast) not to come. She would have to take "LWOP", and bring both of her kids. It would be a burden on her, and with the kids, I don't see how she would be helping mom any. The youngest can't even go to the hospital. My mom is staying in a hotel near the hospital and I KNOW my sister doesn't have money for that. I figured she would expect my mom to pay.
This makes it sound like my sister and I don't have a good relationship and that isn't true. It's just that I'm pragmatic.
I called my sister and told her everything I know. I told her coming now, or coming later, that's her decision.
Not my name on ebay.
posted on April 29, 2002 01:18:29 PM new
Valleygirl, you did the right thing by telling your sister. The decision whether to travel cross country with her children will have to be hers to make, but she should be given the opportunity to do so. My husband made several coast to coast trips before his dad died three years ago. It took all our spare money that year and he still had to leave three days before his dad died because he had been subpoenaed in a court case. But he was glad that he could make those trips.
My father died last month after a long illness. He was in the hospice program and we were lucky that one sibling is a nurse. We muddled through all sorts of procedures at home, but we were all there in the end - though not without some nasty spats along the way. I know how hard this can be and I'm sorry you have to go through this. Even though children can be demanding and in the way at a time like this, it may be much better for all of you if your sister is there. You'll have each other to fall back on.
posted on April 29, 2002 01:29:52 PM new
Valleygirl, if your sister comes, tell her to ask for a "bereavement fare" with the airlines when she books. All of them do this, although they will ask for the name and phone number of the hospital or funeral home, etc. Even if your dad hasn't passed away, they will give this fare if he is considered terminal. It is at least 1/2 of the original fare. Good luck, and I'm very sorry.
posted on April 29, 2002 01:30:41 PM new
There are no words to relieve the grief that you are experiencing. It's good that you called your sister and for you, your mother and father's benifit, I hope that she will be able to be there. Convenience and financial considerations should be set aside at times like this.
posted on April 29, 2002 01:50:29 PM new
If your father is "with it" run to his Doctor and have him explain to your father what a DNR--Do Not Resuscitate Order is. If it is possible, ask your father what he wants. If he is unable to sign, or even make an x make sure your mother observes this. HE may want "everything possible" done, but many, given the option, the dignity, and the opportuniy, opt out. He may even have one on file already in his records at one place or another. Also, if the hospital he is in has a hospice, as to meet wiith a hospice counselor, with mum of course.
posted on April 29, 2002 10:43:12 PM new
Valleygirl, my heart goes out to you. I can't talk about it but I will say I am sorry. Please just know that complete strangers care lots. Take care of yourself.
posted on April 30, 2002 02:22:35 PM new
Kraft: how kind of you to ask. I spent all day yesterday crying. And this is at work. I got up from my desk and left to go outside several times.
I'm better today, I'm the strong one, and that is my role in this tragedy. My mom will fall apart and my sister will need me. My brother will be a basket case. But I'll be strong, make all the arrangements, and stay with my mother until I can convince her to come home with me. At least for awhile.
posted on April 30, 2002 03:34:55 PM new
valleygirl, my heart hurts for you for I have been through loosing a sister, two brothers and a mom and dad. You cry all you need to and then some. It is a release that lets you get to the next crying spell. You said you are a Christian, and I'm so very happy to know that about you. That lets me know that you lean on God for guidance and comfort that only He can give. I will pray for you and your whole family.
posted on April 30, 2002 06:12:49 PM new
I understand where you're at ValleyGirl. My mother is terminal with cancer and I am helping her out everyday. It is hard to watch your mother disappear right before your eyes, being eaten alive by the turmor(s). Worse, I am the person on the Living Will, so when the time comes that my mother is in the hospital and has progressed into an irreversible comma, I'm the one that gets to approval pulling the plug on her. I'm not looking forward to that. My brother, sister, and father are worthless as they are basket cases over this and I am the only one with the strength to do what needs to be done. I guess I'll wait until she is gone to fall apart.
posted on April 30, 2002 07:28:59 PM new
>>Worse, I am the person on the Living Will, so when the time comes that my mother is in the hospital and has progressed into an irreversible comma, I'm the one that gets to approval pulling the plug on her.<<
Bobo: There is no "pulling 'the plug'". "The plug" is the default position doctors must take when there is no DNR in place (often to their chagrin.) They may keep a body going long enough for an authorized organ harvest if someone is declared brain dead. Maybe.
Everybody should have a living will, or a DNR for just these sort of times.
Perhaps I should've just heeded Valley Girl's expressed wish "to talk". It's just that I've done a lot of this crossing over from one side to the other kind of work. It squicks people, but it squicks the non-dying more than the dying, who, in my experience, are more often than not ready to get real. I offer you the same unsolicited advice i GAVE vAlleygirl.
posted on May 1, 2002 01:07:01 PM new
Valleygirl, My Grandmother died a few years ago at the age of 82 and several years before she died she would allways say that she was ready to die or ready to go. What she meant by this was that she had lived a full life and had few regrets and that she was not scared of the inevitable anymore. When it finally happened, and this may sound strange, I was actually kind of happy for her, I guess because she lived a full life and she was willing to meet death headon. I was however sad for myself and still am. We were very close and I miss her alot.
Your Father sounds like he lived a full life also and when it does finally happen you will be strong and sad for a long while.
As you said in the thread that I started you will close your eyes and remember him in your own way or something like that and this will keep you going. These are strong words from a strong person. Afterwards I suggest that you talk to your family about the happy good times with your Father. You will get through this.
We talk about Grandma all the time and believe me it helps alot.
posted on May 2, 2002 02:00:32 AM new
Valleygirl, I'm glad you were able to come here to "talk". When you're the strong one in the family they lean on you,and you can't really share your feelings with them.
I agree with NYC about talking to your dad about what he wants done. If you could be alone with him it might be better. He may not want to talk about it with your mom there.
For you and the others here going though this trying time, you and your families are in thoughts. I'm so sorry.
posted on May 2, 2002 08:35:43 AM new
chococake--problem is if that he slips into unconsciousness or into altered mental state the first and only in line to sign, is the spouse...
posted on May 2, 2002 10:09:36 AM new"I offer you the same unsolicited advice i GAVE vAlleygirl."
I appreciate your comments and your input, NYCY. In Oregon, the Living Will is explicit enough to accurately define what must be done according to the wishes of the dying person. While not all illnesses end up in irreversable commas, that is how this type of cancer seems to do its work. My mom's wishes are that if two independant doctors say that regaining conscieness is hopeless and that a cure is hopeless, then it will be up to me to decide whether she would want to continue with life support. I am the only one in our famioly that she trusts to make such a critical judgement, but it's a Pyrric Honor, if there is such a thing as that.
posted on May 2, 2002 10:40:32 AM new
>>My mom's wishes are that if two independant doctors say that regaining conscieness is hopeless and that a cure is hopeless, then it will be up to me to decide whether she would want to continue with life support.<<
Whoa. Why should *you* decide *whether she would want...* What does she want? Mum, what do you want? You do? Sign here.
Again, you may be right, and I don't know Oregon law, but here, if a DNR is in place they will not hook a person up to life support, such as a respirator. If there is no paperwork in place or family doesn't happen to be there to sign this fast at 3 a.m. (spouse-then oldest sibling--on down) they must hook them up. Then you can't unhook them because it would be murder.
DNR's are more important than living wills IMO.
(Whatever did happen to that girl who was in a car wreck at like 16 and spent 20 years in a coma on life support. This goes back some but I remember the parents fought like mad for mercy.)
posted on May 3, 2002 04:38:36 AM new
Valleygirl, you have my sympathy. I hope you have someone to vent to during this rough time. I also think you did the right thing by letting your sister know.
As to your dad's sepsis, toxic shock syndrome is just one type of sepsis (infection). Your dad has an infection in his blood.
As for your mom "allowing" resuscitation, unless there is a signed DNR (do not resuscitate) order on the chart, the hospital staff is obligated to resuscitate, regardless of condition.
Borillar, you have my sincere sympathy too.
NYCyn, Karen Ann Quinlan died after being removed from the vent. You have the right to an informed opinion -Harlan Ellison
posted on May 4, 2002 12:28:07 PM new
Hi again Valleygirl. I'm just checking to see how you're doing? It's a roller-coaster ride isn't it? The weird thing is, that is does get better with time. When my dad passed away, Zilvy told me to take as much time as I needed to 'come around'. Just hearing that made so much difference. I hope it helps you too!
posted on May 6, 2002 01:02:03 PM new
Thank you all from the bottom of my heart. I know I'm repeating myself when I say that posting, like talking, is theraputic.
I live three hours from my parents and three hours from the hospital. My parents live about an hour from the hospital. Imagine a triangle.
Mom called and said they wanted to send dad to a hospice near me. I got so excited that mom could stay with me, I had my carpets cleaned, got new sheets for the room mom would be staying in, cleaned the house. Spent $259 at Costco for easily cooked foods. I was so excited at the possibility that mom would live with me until dad died. I could take care of HER, and visit my dad too.
Then she called crying, and said that the hospice/convelescent care center was not eligible for medicare, but they would have to apply for medical. Now, one is federal, and one is state. Medical wants my mother to completely deplete her savings and sell her car before they will cover his stay. Medicare will only pay for so many days (100?) of hospitalization and he's used almost 1/3 of that now. I want to say, "mom he won't live long enough for you to worry about running out of days". She is so optimistic (and worried about him running out of time). But it appears that he is not eligible for the hospice near me. So, instead they will send him to Los Angeles, which means continuing hotel rooms for mom as the distance is not commutable. And it adds four hours to my drive every weekend to see them.
Oh and we finally have a diagnosis (in addition to diabetes, waist down stroke-caused paralysis, and heart disease), it is MDS, aka myelodisplastic sysdrome. Which basically means "bone marrow failure".
I have debilitating migraines and my neurologist had me on Zoloft (an antimigraine drug as well as an antidepressent) I have been physically sick since October, cough, clearing my throat, hoarseness and general fatigue. So while I'm dealing with my mom and dad I've been going to Dr's. Xrays and other tests have ruled out pneumonia, cancer, valley fever, and TB. My neurologist changed one of my migraine medications which also happens to be a high blood pressure medication and I ended up in the emergency room with 179/110 blood pressure. So not only am I back on that medication, its now at a higher dosage.
This is leading up to the fact that I forgot to take my Zoloft for four days. Suddenly, I felt physically better. No more constant sick feeling, fatigue better. Now I've gone 10 days without the Zoloft and I physically feel better, but on the antidepressant side, I can't quit crying. It's like the Zoloft prevented me from feeling emotions and now all those emotions are coming out.
Any of you see that Ally McBeal episode where Courtney Thorne-Smith says to Ally, "Why are all your problems so much bigger than anyone else's?" and Ally says, "Because they are mine".
I now know what she meant by that. All of you who responded told me that you, too had lost a loved one. You probably hurt as much as I hurt watching my dad decline. Yet, you managed to continue living, doing daily things, posting here, yet it feels like my hurt is so bad that I wonder how I can ever feel "normal" again.
How will I ever go grocery shopping, how will I ever laugh again? Is this the pain one experiences when someone dies or is this the Zoloft withdrawal?
Not my name on ebay.
[ edited by Valleygirl on May 6, 2002 01:16 PM ]
posted on May 6, 2002 01:23:40 PM new
Dear, you have me so stirred up that I have two cigarettes going! No, you don't feel better from quitting the Zoloft. You are crying all the time. Crying all the time is not ordinary behavior even in the worst of circumstances. Also, there are classes of psych drugs that one shouldn't just suddenly stop; I don't know if Zoloft is one of them. If it made you droopy you could take it at night. I would hotfoot it to whoever is managing your medications because you won't be any good to anybody if you can't think straight. Have someone contact social workers at the various sites; experienced ones see these problems all the time. Talk to your Dad's PMD and if it's a matter of palliative care, is there any reason it can't be handled in a hospital more convenient to all. Is there another hospice somewhere that does take Medicare? Try the Catholics, they are generally good sports.
My heart goes out to you. The stress that you are experiencing is overwhelming. As nycyn suggested, I think that it would be a good idea to check back with your doctor to adjust the medicine that you were taking right away.
My mother in law is having her estate reduced to nothing right now, under similar circumstaces. And my husband is in a similar position as you are. He feels that he has to visit every day and as a result his health is falling apart. I believe that when a family member is seriously ill, it's more difficult for the family members that it is for the one who is ill.
So try to take care of yourself. It's about all that you can do now. Pick up the phone and tell the doctor that you need some mind altering drugs immediately to help you survive this crisis.
My dad died last August. My sister kept me in the dark and told the hospital not to release any information when I called. The odd thing is that I "knew" when he passed away (a feeling I had), and I later found out that was indeed the time he passed. You must call your sister. It's the right thing to do.
I'm just checking to see how you're doing? It's a roller-coaster ride isn't it? The weird thing is, that is does get better with time. When my dad passed away, Zilvy told me to take as much time as I needed to 'come around'. Just hearing that made so much difference. I hope it helps you too!