Mom's in the hospital again

My mom has yet another bladder infection, except this time it's a pretty bad one, so she is in the hospital, at least until Monday, receiving antiobiotics through IV. They managed to weigh her this time and I was shocked to see that she only weighs 78 pounds, I knew she was very thin, but I just couldn't believe that. While there, they are also operating on a bed sore that she received from the last time she was in the hospital, it has gotten really bad, so hopefully, what they did (they removed some of it), and are doing for it will help.

Her doctor also talked to her about hospice, because she has deteriorated so much, that it is difficult for both her and my dad, and he believes this would be a helpful option for both of him. This upset her because he told her that hospice would take care of her medical needs and that she wouldn't be seeing a doctor. I wasn't there, so I'm not exactly sure what he meant by that. I told her that we would find some more information about what exactly would happen. I told her possibly he meant that her general care needs would be taken care of, but she may possibly still be under the care of her specialists, like her neurologist, but I don't know, I have to find out more. I know this has been very hard on my dad, taking care of her, and I saw a bit of this when I took care of her over the summer while my dad camped. I know I was exhausted by the end of the week, so I can only imagine how it would be 24/7.

So anyway, if you could think of her in your prayers, it would be greatly appreciated. Also, if any one has had any kind of experience with hospice that they wouldn't mind sharing, that would be helpful too. Thanks so much.

OH Pam!!! I am so sorry to hear of the ordeal your mother has been through. I pray for her recovery and for your family to be strong through all of this.

I will add my prayers too, Pam. I'm so sorry your family is going through this.

Pam, your mom, as well as you and your family, will be in my prayers.

Wow, Pam, I am just so sorry to hear this. 78 pounds! I can't even imagine how awful it must be for you watching your mom go through this.

You wanted to hear about Hospice experience. We did have a good experience, back in 1990 when my mother-in-law died of Ovarian Cancer. But I will say one thing...I was VERY upset about the lack of pain medication she was given. She needed stronger doses of morphine...it was the end of her life---why should she be made to suffer so? That was too much for me, there was no need for her to suffer so---there is a lot they can do for pain (especially nowadays) and if anything, I would tell you to stick to your guns about that. Overall though, they were wonderful, caring people---my sister-in-law dealt with them the most though---I think she was pleased with them too. As rewarding a job that would be, I would think it would be such a sad, depressing job as well. Sorry to be so blunt Pam, but do you know what the prognosis is for you mom? I couldn't get a good feel for that from your post. Are the doctors hopeful for her recovery?

Your mom and family will be in my prayers Pam. Keep us posted. (((HUGS)))

My thought and prayers are with all. (((hugs)))

Thank your for all the prayers.

They really aren't sure about my mom's prognosis, Amy. I guess with Hospice nowadays they will step in on a case, like my mom's, to ease things for the patient and the family. Like because she is so weak and it is difficult for her to get out at all, rather than having to go to a doctor, her medical care would be brought to her. One of my aunt's used to work in Hospice, in Georgia, and she said that she had cases for up to a couple of year's. I guess it's kind of a case by case thing. I still don't know much and have only heard things second-hand so far.

She just has so many things wrong with her right now. She has the bladder infection that had gotten so bad, her MS seems to be progressing even more (she even has difficulty swallowing now), she has scoliosis that has gotten worse, right now her sodium level is low, her blood pressure keeps going up dangerously high (though it was back down when I was there with her today), she has a bed sore that they are going to do a test on tomorrow to see if it has turned into an infection in the bone (which could be causing some of her symptoms, and if that's the case, they do have medications to treat that. Her weight indeed really scares me. And she does eat, even when she's not feeling good because she knows she needs to lose weight. She actually looks like a person with cancer, or some type of wasting disease and I even wonder if there is more wrong that they just don't know. She is still very confused. Like today she wanted me to try to make her more comfortable, and she was thinking she was either in her chair at home, or her Amigo (electric scooter). She's been repeating things a lot, and just not making sense with some things. She was like this when she had sepsis.

Right now, I really don't think things look good at all for her. I have never seen any one so weak and fragile. Just eating takes all of her strength. And that is just the chewing and swallowing as she hasn't been able to feed herself for quite some time. She is in a lot of pain, and she is never completely comfortable. It is very difficult seeing her like this. I know it probably sounds terrible, but I would rather see her go and know that she is in peace, than watch her like this because there is just nothing that we can do to make her more comfortable. She tries pain pills, but they make her have other symptoms they make her uncomfortable. But, I just can't see her going on like this. It seems like it's been one negative ordeal after another for her, with no break in-between. She's always been so strong, but she's just had enough. I just want her to be comfortable.

Thanks again for everyone's prayers, and just letting me get things out, it helps more than you know.

I'm sorry I'm late, Pam, but know that I am praying for her, you and the family. If you need someone to talk to, YIM me. I'm here for you!

I'm so sorry Pam!

Thank you, Lily. Yes, my mom has a DNR form already filed. She took care of that several years ago. One nurse came in and talked to her a bit about that. I can't remember the type of care she provided (my mind is so garbled these days), but it would be like a step before hospice. Their goal is to do whatever they can to make the patient comfortable. There is supposed to be a meeting tomorrow with her, a doctor for this group, and a social worker, to talk about her care after the hospital. One thing we were thinking about is a long-term hospital (where you can stay for around 45 days). They have a low staff to patient ratio and are more specialized in dealing with patients with similar problems to my mom. So, I am pretty sure that is going to be our next step, but we have to decide what we need to do after that. My mom has gotten so bad that it is getting to be too much for my dad to do, since the majority of her care has fallen on him. A nursing home is pretty much out of the question because from our experiences that we have had when she has had to go in one, only on a short-term basis, has been horrible. She's come out worse than she was than when she went in because they aren't used to dealing with patients who need her level of care. Hospice can still be a possibility too, but we aren't sure how things are going to go. Right now she has to be on these strong antibiotics for 6 weeks and they are kind of taking a toll on her too. This Friday she is having surgery on her bed sore, and I am worried about what kind of toll that will take on her, she is already so weak. But we did find out that there was no infection from her sore, in the bone, so that is something good.

She seemed a bit better today, a little less confused. I guess low sodium can have an effect on that. Her sodium is at 121 now (was at 117), and to be considered normal it has to be at least at 135. She seemed a little less confused today, but she still had a difficult time collecting thoughts and making a decision. Like deciding what she wanted for lunch took a really long time and deciding what kind of pain medication she would want. The nurse ended up pretty much deciding for her because she just couldn't decide what she wanted to do.

Thank you for sharing your experience, Lily. That does help a lot.

Thanks again, everyone, for all of your continued thoughts and prayers.

I'll be praying for you mom Pam.

I'm glad that your mother is feeling better.(((HUGS)))

Gee, she's sure having a hard time of it. I'll definitely add her to my prayers.

Thanks again for the prayers, everyone. She seemed a bit better today. She is still very weak, of course, but she seemed more alert and she didn't really seem to have the confusion like she did before. Her sodium level is back to normal (big sigh of relief), and she just looked so much better today. When she started worrying about her appearance, I knew that was a good sign. My aunt is going to wash her hair and style it for her, so that should make her feel a little better.

They are still supposed to do the surgery on her bed sore on Friday, but we are still so worried about how she will tolerate that because it is a two-hour surgery and she is still quite weak. They did a procedure where they put in a pic (not sure of the spelling) in her arm so that she wouldn't have to continually be poked because she has to have the IV antibiotics for 6 weeks, and that wore her out.

We are definitely going to try the long term care hospital as a next step. She would go there on Monday, after she has time to recover from her surgery. One of my uncle's was able to go there and check out the facility already and it seems like it would be a good step. They told him that they would make sure that she gets a private room and that we would see marked improvement in her bed sore in 2 weeks, and that it should be healed in 4 weeks. Well, that would be amazing since she has been dealing with this for several months. But the patient to staff ratio is 1 to 3, so that would be wonderful. It's so hard to get anything done for her in the hospital. It takes forever, but partly because the staff does have a larger patient load. So, I'm hoping this will be a good thing. Once she is ready to go home from there, palliative care will step in and we will talk about care for her when she goes home.

I know I'm feeling better today anyway (a bit of relief). She hasn't talked about dying today and I heard her telling one of my uncle's that she thinks she's going to make it. First positive thing I've heard from her since this all started. I'm sure she will still have some rough days (especially with the surgery), but I am just so glad that she felt more like herself today. That was good to see.

Thanks again for your prayers, I can't tell you how much it means to me.

Glad to hear there was no infection in the bone, at least. Wow, I can't even believe how much is on her plate, which is of course on all of you too. Do your siblings live near to help out too, Pam? I remember you said you have a brother. I hope the burden is not all falling to you and your dad alone. My prayers are with you and your family, Pam.

My brother actually lives with my parents. Although he works two jobs, at least there is someone else around some of the time each day, in case my dad needs a break and needs something. He'd love to buy his own house, but at the same time feels that he's where he's needed. I haven't seen him much since my mom's been in because he sleeps at the time I've been at the hospital. (He works evenings and midnights.) My aunt has been there every day too, and one of my uncles most days. Even an uncle who lives a couple hours away (Lansing area), has been here a couple of times, so we've had a lot of support through this. One of my aunts, who lives in Georgia and is a nurse, is trying to come out hopefully on Thursday, as long as she was able to get the flight she wanted. She's also worked in hospice so she is very knowledgeable in caring for patients who are very weak and who've had the kind of pain my mom has had, so that should help. I know it comforts my mom when she comes to visit.

Thanks Amy and Savannah. Just "talking" about it helps too. Sunday night when I came home all I could do was cry because she looked so horrible, and I could tell she was suffering. So, seeing her in better spirits today was wonderful.

Savannah wrote:

Pam, it's wonderful to hear that your Mom is starting to feel a little positive, too - Telling one of your Uncles that she thinks she's going to make it! Please keep us posted. I'm praying for strength and healing for her. {{{BIG hugs!}}}

I'm praying, too, Pam. What she said to your uncle... wow, that made my heart jump (in a good way). That's such a huge positive!

Me too, Rob. Me too. Especially since the day before she said she was ready to give up. I'm hoping she is even a little better today, but I know it's a one day at a time kind of thing too.

Thanks for the prayers.

I'll be Praying