I Think Mom Is Starting To Fade.......
 

Mom hasn't been doing very well the last few days. I told the visiting nurse today about my concerns. Mom has stayed at a steady 134.7 lbs for quite some time now. But a few days ago, she has dropped to 127.2 lbs. She's not eating well. Food doesn't taste good and she gets sick to her stomach so she quits eating. She also has trouble getting some of the nasty pills down and will vomit. This goes on every day. The Drs don't seem too concerned because they said there is really nothing that can be done to help her except maybe some anti-nausea medicine. She has been staying in bed for the last two days with very little energy. The home health aide came and was able to give her a bath and I am very thankful for that. I'm really not sure what to do since I've let her Dr and nurse know. Monday we go to the kidney Dr. and to have labs done so maybe she will find some kind of comfort.

I think this would be a good time to try hospice again. Seems like there was some sort of misunderstanding the last time about dialysis. Am I remembering correctly? I think hospice could really help a lot. She needs comfort care right now, and hospice is usually the best at providing comfort care.

Thank you Gayle....I was thinking today of contacting them. I will be doing that on Monday after her appt. with the kidney dr.

You were right in remembering there was some sort of misunderstanding. One Dr. thought she needed it right away and the other Dr. couldn't understand why. They also sent out a very young man to speak with us and he acted like it was his first day on the job... lol.

Janet, I'm so sorry to hear that about your Mom. I know that it has to be really hard to see her getting weaker. You are both in my prayers. I think that Gayle is right......it's time to contact hospice again.

She must be so tired. I know youre tired and that you will hold on as long as you can. Get all the help you can and keep her comfortable.

My Mom's been gone three years this week.

I am so sorry this sort of anniversary is coming up for you Sandy. I know it has to be hard.

You're right....I am tired, but so is Mom. The thing I'm having trouble with now is that she is finding it hard to swallow food. She can chew, but it doesn't want to go down she says. I will speak with the kidney Dr and nurses and see what they say and then make an appt with her regular Dr. It's hard not knowing what to do or which Dr. to contact. If it wasn't for Gayle....I'd be more crazy than I am.

It probably should be her regular doc to tell about the swallowing problem. She needs palliative care, commonly called "comfort care" right now. I bet a hospice nurse would know what to do. I hope you can contact them.

I will on Monday, for sure....Thank you so much Gayle.

I am so sad for you and Mom, Janet. It sounds like she is suffering.

The hospice will be more responsive to you since you have inquired before.

Janet, if I had a do-over I wouldn't have put my mom through the "testing and doctoring" that went on after her stroke. In my humble opinion, when an elderly body begins to shut down it should be allowed to do so when a doctors intervention only prolongs the inevitable. Call Hospice again please. I know how hard it is Janet, but I also know how strong you are. God Bless you both. Love you!

I will be calling Hospice tomorrow. I have to make sure the Dr says it's for heart failure. If we say kidney failure, Mom would have to quit dialysis and she doesn't want to do that yet. She is sleeping alot. Tonight I made spaghetti and garlic bread. She ate a few bites and then promptly threw it up in the trash. I just don't understand why she can't eat without throwing it up. Tonight when I weighed her before going on dialysis...she dropped down to 126.2 lbs. Her clothes look huge on her now.

I just don't understand why hospice requires someone in kidney failure to go off dialysis - I don't think that is right.

But yes, the doctor should say it is heart failure.

I don't think it's right either. Her BP is 90/57 this morning. Very light headed and passed out once. Her weight is now 125.6. She's eating breakfast right now...I hope she can keep it down.

It's because dialysis is considered a life saving measure, and hospice is for palliative (comfort measures only) care. It may seem harsh, but hospice is end of life care. I love you, Janet. My heart is with you.

I just want to say I'm very sorry Janet and I am praying for you both.

Just wondering how your mom is doing this evening, Janet. My prayers are with you both!

Hi Janet,

I just read about your mother and I am sorry to hear. I hope she is eating better today and not throwing up. Hugs my friend .

This has been one heck of a day. We started our day off with breakfast. Then we went to get dressed, Mom made a bit of a mess on the flooring (linoleum) so I had to clean that up. We got dressed and Ricky helped me get Mom in the van. She was weak, but did okay.

We arrived at Wellbound (kidney dr.) and as I was getting her out of the van, I had her just lean against the seat before getting into the wheelchair. She passed out and started to slide down. I was able to get her to the wheelchair and into the building. We were able to go right in. We got her out of her wheelchair and into a lounger type chair. Blood was drawn for a complete lab workup. Mom absolutely loves the nurse who takes care of her, but couldn't remember her name...only that she was her friend. After a while....Mom remembered Ruth's name.

Dr. came in and listened to all our concerns and then checked Mom out. Said he really wanted her to see a neurologist. I asked him if it was really necessary. He wants to find out why Mom is passing out and to rule out anything neurological. I reminded him that her heart Dr. put her on a med to raise her blood pressure and for awhile it worked, she didn't pass out. The meds must have quit working because her BP was no longer staying elevated and she was passing out again. Told him the heart Dr said he couldn't increase the dosage because of a leaky heart valve...afraid it would leak even more.

The nurse got Mom from the chair to her wheelchair and immediately Mom passed out. The Dr. came running in and took her BP...it was 89/51. He had her making fists and after a bit, her BP went up a little. They helped me get Mom in the van. When we were about 5 miles from the office, I remembered they forgot to give me back the paper with Mom's medicine dosage on it that I had brought so I had to go back and get it.

When we arrived home, Ricky came running from the garage to help me get Mom from the van to the house. As she was getting out of the van, she passed out again with both Ricky and I holding her. We couldn't hold her up so gently let her go to the ground. She came to and then we were able to get a better hold and got her into her wheelchair. She rested for a minute in her chair and then said she would like something to eat. She wanted chicken salad on toast, buttermilk and a couple pieces of mandarin orange. She ate all of it and then promptly threw it up in the waste basket.

She then wanted to go lie down in bed. She doesn't want to sit in the recliner anymore, preferring to lie in bed. I did take her in the newspaper, she read it and then went to sleep.

I was gathering all my phone numbers for home care and Hospice when the phone started ringing off the hook it seems. A friend called, a friend of mother's called, the neurology nurse called to set up an appointment (I have to try and keep Mom awake as much as I can and then have her in the office by 7:00 AM on Friday morning), the Physical Therapist called to let us know he was coming in the morning at 9:00.

Needless to say...I didn't get my phone calls made. So...I have to run to the bank (I forgot to make a deposit) first thing in the morning while the PT is here with Mom or have Ricky do it for me and then I will hopefully get some calls made. The Social Worker at Wellbound said she could help with the phone calls, but I want to be able to make the appts. myself. I told her if it got too overwhelming I would let her know.

So....this is how my day went. Oh...husband came home complaining about my son....told him I didn't want to hear it and I would be on Ricky's side anyway. Needless to say....he went out in the garage and stayed for awhile. I don't need anymore aggravation and let him know exactly that. Also told him to be sure he and Ricky picked up after themselves because if I have to pick up anything after them....it was going in the trash. No one picks up after me and I was no longer picking up after them.

Other than that....I've had a really hot day. :)

Holy cow...didn't realize I wrote that much....lol

Oh Janet, my heart aches for you. You are so strong to carry on through all of this. I'm almost at a loss for words. You just can't imagine how much I admire you for all that you do every day.

Oh my, Janet. This is so hard for you! I hope you get your phone calls made. It sounds like it would be best if she could get into a care facility. You are a wonderful caretaker, but it seems like it might be too much for both you and her. If you take her to the neurologist, I am wondering whether the trip, and the passing out, are doing her more harm than good. She isn't eating, and she may need an IV for nutrition.

I think it is your decision to do what is in your heart. I am praying for you.

Janet, I'm so sorry that you're dealing with all of this. I wish that I could work out something so I could come and help but we have so much going on here right now that things are just crazy. You're in my thoughts and prayers!!

I agree, when my grandma was taken to the hospital I was the one that had to make decisions because no one could handle it. I was in denial also and wanted to do whatever it took to get her better. Of course her body was fragile and she was in peace. I think the best thing is to get them as comfortable as they can be.

My thoughts and heart goes to you Janet. You are a wonderful daughter.

You wouldn't have a very good time if you were here and when you are able to come...I want it to be a great time.

You know...even though Mom now can not stand without help (no balance) and has all these problems and now she is in bed alot....she still doesn't really seem 'fragile'. Even though she isn't able to do things like she did....she doesn't seem like she's going to pass anytime soon either. It's so hard to know what is best. Hospice will come out and tell us what they think. If they think it's too soon...they said they will always be able to come later.

I sure wouldn't wish this on anyone.

What have you found out about your arm? Have you gotten any relief yet?

Nope....not yet.

Janet...not been posting much of late, but i am still here reading.

I have been through what you are going through, and it is very hard, you are doing so well, just take each day as it comes, you will get there and things will get better.

Love and prayers to you and your mum.:ghug:

Thank you so much Diane, glad you posted. Sure would love to see you more often on here.