Mom is starting hospice soon

[TaraPA]

Mary - I found myself today wondering how your day was going with your mom. If it helps you to keep posting here, please do so, we are all thinking of you. We did not have hospice care at the end for my GF, everyone took turns staying with him 24/7. We did have the patches for pain. He was inpatient for about 5 days, came home on a Tuesday & was gone 2 days later. I was not there when he passed, his brother, sister & my aunt & uncle were. They said they were reciting the Lord's prayer (he was not, he could not speak anymore at that point) and they just knew he was gone. I'm not a religious person but he was, so that was the most fitting end for him. My aunt, who was very emotional the whole time & thought she could not handle the actual passing, said she felt a weight had been lifted at the end of the prayer. She said it was sad yet peaceful. She felt no emptyness, pain or depression like she thought she would. So maybe you will have a different reaction than you think you will. I have no idea why I think posting this will be of any use to you, it was just my GF, not a parent or spouse like most of you have had to, or are dealing with. Sometimes it just helps to talk I guess!

 

[Rustysmom]

Thank you

We were thinking about asking the aide she has now if she could stay later and we would pay her. Right now my mom is alone for about 4 hours during the day and then all night. I think it's ok for now, but I worry about when she gets worse.

 

[NEVERENOUGHWDW]

Funny, I was on my way to the office and I wanted to check in here before I left.
We had a wonderful experience with hospice with my father in law but at most they were ther 4-5 hours a day. My mother in law was always there and it was stranege the last few days...

The house was filled with grandchildren, his children, spouses and of course my MIL....he held on until all the grandchildren left for the night and then passed around midnight. It was something I was so nervous and scared about but as we all kissed him goodbye, said final thoughts and prayed as a family it is something I will never forget and was honored to be there, he was a wonderful man.

Please know some many are thinking of you and praying for you.
Have a peaceful day & remember to take care of yourself...

 

[Regina]

Thank you

We were thinking about asking the aide she has now if she could stay later and we would pay her. Right now my mom is alone for about 4 hours during the day and then all night. I think it's ok for now, but I worry about when she gets worse.

The last thing I want to do is alarm you, but the drugs do impact their state of mind and they can get very disoriented. I hope that you're able to get more help.

Hospice provided a hospital bed. We had to keep the bars up since my Mom thought she was well enough to get up on her own. One time she tried to wiggle down to the end of the bed and slip out in the gap between the bottom of the side rail and the foot of the bed. We came downstairs and there she was, stuck. (Very stubborn Italian Mama.)

Being there when the end comes is a personal choice. I thought I couldn't handle it, but when the time came, I knew there was nowhere else I'd rather be than at my Mom's side letting her know that we'd be alright and she could let go. Again, I'm not encouraging you, just sharing my experience.

You're in my thoughts.

 

[TaraPA]

How are you doing these last few days Mary?

 

[Rustysmom]

Just got back from the weekend at my mom's and she doesn't seem to be doing well at all. She had a lot of pain Friday, so we tried the Fentanyl patch yesterday. She woke me up at 3 this morning to come take it off because she said it was giving her more pain, plus she tried to urinate twice and was unable to, which never happened before. So I took the patch off. I'm not sure if it was the patch or the fact that once again she didn't have a bowel movement in a week, and we gave her magnesium citrate last night. At least she finally did have a bowel movement.

After she went to the bathroom, she sat down for a while and then seemed very confused. I couldn't even understand her when she talked, and was talking about how she has to get a Swiffer duster to dust the ceiling and why did I take my old picture down and put our small wedding picture in it's place. It's been there for 15 years now! She was like that when we left. I just called her a little while and she still wasn't making much sense. I'm so nervous that she's going to get up and fall. Hopefully she'll sleep until the aide comes tomorrow morning.

I'm starting to think that hospice is for the birds because we called them to ask if they could get her some kind of foam pad to sit on because she's getting a bedsore. The nurse we spoke to didn't want to do that and said something about it's not safe and to turn the patient every few hours. Problem is, my mom refused a hospital bed. She sits on the couch and she can't lie on her side or back. If she lies on her back, she can't breathe. For years, she's slept on the couch, but she was able to get up. Now that she can't get up much, she's getting the sore. So they are willing to give us a hospital bed, but they won't give us some kind of little foam pad for her to sit on? The first nurse who took all our info wanted to order a foam mattress for the couch, to which my mom said no, so I don't know what the problem is now. The nurse is coming tomorrow and I hope she'll order it, along with more pills because she's running out. They are getting me really annoyed.

My mom's church is also getting me annoyed. She's been going to it for over 40 years, every single day until she started having problems with her knee a couple of years ago. I went there until I got married and went to their school. My DH called them three times now to please put her name in the bulletin so people can pray for her, like they do with all the sick parishoners, and for the third week in a row, her name isn't there. Last week he actually took a walk there and they said oh yes, it'll be in there next week. Is it too much just to put her darn name there so people can pray? I'm starting to think that I don't even want her funeral there, but I'm not sure what she wants. My DH used to be friends with a priest who was a Mom's church, and I think he's going to call him and ask if he can do it when the time comes.

 

[Mackey Mouse]

Oh Mary...

I am starting to get worried long distance...Please do not misunderstand me here but is she alone and confused like that or did you get someone to come in and stay with her when you cannot.. If she is that confused, she should not be alone. I know you have family and a husband, but can you maybe get some help in for her if you have not already.....Also, do you have a power of attorney????? Who makes the decisions for her if she cannot or healthcare proxy?

I will try and address what I can, but please do not get upset......Laxatives, what you want to do is to make sure she does not get constipated, gets to that point where she is anxious because she cannot go....so with that you might have to give her the laxative every day.... DH was taking it twice a day while on pain meds.....when he was regulated, it was once a day... not just when he was unable to go.. Maybe I did not read what you wrote about the laxative correctly and you are already giving it to her once a day. Those pain meds are the worse with causing terrible constipation, but they are a necessary evil to take away the pain. Did you get her oxycontin?????????? and not the oxycondone? I think that worked so much better for pain management.. truly. Tom did not use the patches as his oncologist felt oxycontin was better pain management for him...

Also, the fact that she could not urinate concerns me a bit. I would ask the doctor about that as something might be going on there. Will you be there when the nurse comes...make a list with questions and make sure you get them answered and remember she is there to help your Mom... Darn, darn, darn.

The church thing.....I would call and ask to speak to the pastor and let them know how upset you are. Your mother was an active member of this church and I am sure everytime that collection plate came around, she gave. She needs them now...has a priest or minister even come to visit her... they do sick visits and I would ask for that. Maybe when you call ask them if a donation is needed to have them pray for a very ill member of their church....what is it you have to do to get her name in that darn bulletin. I am getting annoyed myself with this.

But first and foremost, I know you talked about getting someone in so that she is not alone..... I hope that you were able to do that especially in her confused state.. I wish I could be more help to you and I certainly do not understand why if she chooses not to sleep in the hospital bed that Hospice cannot make her comfortable on the couch.....darn. I think it probably has to do with liability and putting the sides up on the hospital bed if she becomes disoriented and trys to get out of the bed and somehow hurts herself, who is liable?

Please know that we are here for you.....to support you and give you help however we can. Stay focused on what truly matters and that is your Mom, keeping her comfortable and safe.....the other things are annoyances but what truly matters is her and your time with her. I am not saying do not speak up, I speak up, Italian here, but I try very hard to stay focused on the big picture...it is not always easy as with everything else that is going on it is easy to get upset with what should be done and what is not being done.

I am a pm away and I know others here would be only too willing to pm with you if you need us.

Big hugs



.

 

[Rustysmom]

I sent DH to check on her during the night because I was worried, and thank God she was ok, and then he checked on her early this morning before work. I just called her and she sounds better today. This was the first time she was so confused like that. Maybe a little before, but not like that. I think her bowel problems really got to her because she had diarrhea a couple of times yesterday and she had to keep getting up to use the bathroom. Maybe she was just very tired. I have no idea. We have a commode all ready for her to use, but she doesn't want to use it. Well, thank God she knew what time it was and that my DD's name is Gianna, because she was calling her Michele yesterday. Who the heck is Michelle? She knew that it was St. Patrick's Day and that I was bringing over a corned beef and cabbage for dinner and she promised she would try to eat it. We're Italian, not Irish, but we love it anyway. LOL

I'm starting to think that she's going to have to come live with us whether she wants to or not. I know she doesn't want to, but if she gets that confused again, then maybe she won't even know where she is. Maybe she'll go along with it, I don't know. Or maybe the hospice can put us in touch with someone who can stay with her at night. I don't think her present aide would be able to because she has a baby. Or maybe one of us will just have to stay at night. Night is when I'm most worried because the aide is there until 1:00 and then we go about 5ish.

She takes laxatives every day, but they don't work. She takes 3 colace and 2 sennokot every day, but nothing. The magnesium citrate is the only thing that gets her to go, but we can't give it more than once a week because drinking a bottle of that plus 2 glasses of water makes her feel sick, even if we spread the dose out. Half a bottle doesn't work.

We spoke to the nurse about getting her oxycontin instead of the oxycodone and she said the doctor has to prescribe it. Yes, we know that, but the last nurse used to ask the doctor and then he would do it. I'm not sure if we have to ask the doctor, but I'll find out today. The nurse is coming this morning, so we'll see. And if they don't want to get her a pad, I'm going to a surgical supply place and find one myself.

Sorry I'm rambling on. I have a horrible sinus headache today and I can't even think straight myself.

 

[Mackey Mouse]

"I'm starting to think that she's going to have to come live with us whether she wants to or not. I know she doesn't want to, but if she gets that confused again, then maybe she won't even know where she is. "


I think you know what needs to be done here. What if she fell and she was alone, you probably would never forgive yourself. How will you know if she becomes disoriented in the night, what if she tried to leave the house in that state, or what if she decided she wanted to cook something and left the stove on.. there are so many issues here that you may have to have her live with you or hire someone full time........it is dangerous for her to be alone in this state.

Hospice info found here and the concept of what Hospice is all about:

http://www.hospicenet.org/html/concept.html

 

[NEVERENOUGHWDW]

"I'm starting to think that she's going to have to come live with us whether she wants to or not. I know she doesn't want to, but if she gets that confused again, then maybe she won't even know where she is. "


I think you know what needs to be done here. What if she fell and she was alone, you probably would never forgive yourself. How will you know if she becomes disoriented in the night, what if she tried to leave the house in that state, or what if she decided she wanted to cook something and left the stove on.. there are so many issues here that you may have to have her live with you or hire someone full time........it is dangerous for her to be alone in this state.

Hospice info found here and the concept of what Hospice is all about:

http://www.hospicenet.org/html/concept.html

I am so concerned about her falling during the night. Our Uncle when he was home with hospice was so confused with the pain meds 2xs he left the house in the middle of the night.

Remember a few rules...the older you are the more the meds will cause confusion.
Also she could be at the start of becoming anticolenugent (sp) which simply means her body is not processing the medication and is having a toxic effect. I would really watch her hydration because that will help from becoming toxic as well as helping the constipation.

Her not being able to urinate could also be from the pain meds but it could be a sign her kidneys are having a very tough time. I would call the doctor. Did you ever speak about the fentynal lollipops?

Take Care....

 

[lookingforward]

My thoughts and prayers are with you and your mom! I am currently undergoing chemo for breast cancer and I agree that cancer stinks! Please, PLEASE call another hospice agency or call an elder care manager in your area. Hospice should be 24 hours a day now that your mom is so ill and her medicare should cover any expenses for this. I am a social worker and she should be getting much better care than what is being offered to you. My uncle died of liver cancer and his hospice nurses were 24/7 and very involved in teh family,e tc. We actually grew attached to them. Let me know if you need any local resources, I can check for you, okay?

My thoughts and prayers are with you, your mom and family. Hang in there!

 

[LeahA]

Mary-my heart goes out to you...my mom is still hanging in there...the confusion is scary...when you don't know what to do, follow your heart and you won't have any regrets...I will pray for you, your mom and your family.

 

[zalansky]

I have said it before and agree with lookingforward, I just don't see how Hospice is not involved 24/7. The only thing I can think of is that their local hospice doesn't offer it, maybe they don't have the staff or resources for it. My heart goes out to the OP, I don't know what we would have done without our hospice nurses. They were our lifeline during those last weeks. Can you call her doctor and see if there are other hospice services available in your area? There has GOT to be something.

Also, your mom should definitely have a hospital bed. I know its hard for her to accept it because it probably means she is accepting what is happening to her. It would just be best for her safety and comfort.

I just hate what I am reading here. I am so sad for the OP and especially her mom. I hope something changes soon OP. Hugs to you, keep us posted.

 

[Regina]

Zalansky, as I said before, it might be a regional thing. As was my experience with the NY Metropolitan area, Hospice does not provide 24/7 care. The OP is in the same region. If you wanted 24/7, you had to go to a Hospice care center, something my Mother did not want to do.

Our Hospice nurse was terrific and was there as much as possible, but we did hire a private aide for the 10 weeks my Mom needed special care.

Rustysmom, I hope that things are getting worked out.

 

[lookingforward]

Zalansky, as I said before, it might be a regional thing. As was my experience with the NY Metropolitan area, Hospice does not provide 24/7 care. The OP is in the same region. If you wanted 24/7, you had to go to a Hospice care center, something my Mother did not want to do.

Our Hospice nurse was terrific and was there as much as possible, but we did hire a private aide for the 10 weeks my Mom needed special care.

Rustysmom, I hope that things are getting worked out.

AH, this makes more sense. So in other words her choice would be to go to a hospice center or have home health assistance/management? Wow, thats unfortunate that the families have to pay for private nurses! Here in Florida we have both, centers and home care. Thanks for clarification.

I do believe that home hospice is such a wonderful thing! I wonder if it's lack of funds, etc.

 

[Regina]

AH, this makes more sense. So in other words her choice would be to go to a hospice center or have home health assistance/management? Wow, thats unfortunate that the families have to pay for private nurses! Here in Florida we have both, centers and home care. Thanks for clarification.

I do believe that home hospice is such a wonderful thing! I wonder if it's lack of funds, etc.

Yes, that is how it worked when we needed it. If you wanted Hospice to provide around the clock care, you had to go to one of their centers.

I know that my Mom would have qualified for a part time Aide, but we went with hiring a lovely woman who became one of the many angels who helped us through this rather than having people coming and going. Sadly, the downside for many could be the cost. We know we were blessed to have been able to afford it, but it could be out of reach for some, especially since it's so open ended and you have no way of knowing how long you'll need this level of care.

Hospice did provide the medication, walker, hospital bed (all but the pads), commode, oxygen, etc. Still, none of this was forced on my Mom. It was provided and it was up to her as to when she was ready to use it. They tried to be as unobtrusive as possible.

I wish I didn't have experience with this. I wish that Rustysmom and none of you ever need to call in Hospice.

The best I can do is offer my prayers.

 

[kimis]

Mary you and your family are in my prayers. A little over a year ago my mom died with small cell lung cancer. She was 69. The doctors told her they too could do raditation and a feeding tube but it would only add a few weeks. She said no. Hospice was called. They were wonderful! They wouldn't let mom suffer. They were such a tremendous blessing to all of us. Again you are in my prayers!

 

[Mackey Mouse]

Mary, please check in and let us know how your Mom is doing. I hope that you and yours have a pleasant holiday weekend and do the best you can...

I am concerned as you have not checked in for a few days and thinking maybe you are trying to organize everything.....

Hugs!

 

[Rustysmom]

Mom's not doing well at all now. The hospital bed came on Friday and she started screaming when we put her in it. It has a special inflating pad to try to help her bedsore. We told her she had to stay in it a little while just to take the pressure off and she screamed and cried, and we finally had to give her a Xanax that her old doctor prescribed when she was in the hospital. That knocked her out so much that she slept though when a nurse finally came to put a dressing on it. When she finally woke up, we took her back to the couch where she likes to sit.

On Saturday we made her sit in the bed awhile, again with the begging to take her out. It broke my heart. I finally got the bright idea to take the pad and put it oin the couch. It was kind of hard to do because the pad is big, but somehow I managed to get it to work. She was happier sitting there.

Today, she's not doing well at all. She was out of it most of the day and very weak. She could hardly walk to get to the bathroom, and when she did, I don't think she went. I'm afraid her kidneys might be shutting down now. She was also coughing a lot, which she never does. She ate some cheerios this morning, but after I gave her the oxycontin, she said she couldn't open her eyes and didn't eat anything after that. Not even the leg of lamb with the potatoes that she always loved. All she had the rest of the day was some water and maybe half a can of Ensure that she didn't want, but I got her to drink anyway.

Hospice is awful. Her regular nurse never came back to put a dressing on her bedsore. She stuck a Fentanyl patch on her Wednesday and said she would be back to dress the sore and take the patch off and give her the oxycontin, and never did. The hospital bed didn't come when they said, and the medicine came a day late.

Tonight we asked them if a nurse could come out and check her and they said oh, it's Easter and nobody is available. That's wonderful! What if she's dying and I don't know? Then she was having a lot of pain and the stupid nurse never ordered any meds for breakthrough pain and she couldn't take any oxycontin until 9:30 tonight. So the nurse told us to open the comfort pack they sent at the beginning and give her morphine.

I have no idea how much longer she has, but it's not looking good and I'm so upset that hospice isn't much help. Please pray for her, because I don't know how much more I can take of this.

 

[Disneylover 2]