Kathryn is continuing to decline at a faster rate than she had been. Since being place in Hospice at home care. She is now in pain most of the time but Hospice is working hard to get it under control and doing a good job of it.
Here is a list Meds they have started her on:
Gabapentin Capsules: Treat neuropathic pain (pain due to nerves being damaged or affected).
hydrocod apap5 500mg tab: a narcotic, hydrocodone relieves pain by binding to opioid receptors in the brain and spinal cord
seroquel 25 mg tablet: can decrease hallucinations and improve your concentration. It helps you to think more clearly and positively about yourself, feel less nervous, and take a more active part in everyday life.
It is hard to believe we have reached this point so quickly. I seems like it was just yesterday I first was invited by Joan to visit this site. After thinking about it I think it was three years ago this month but seems Kathryn's decline has been unbelievably fast. She is still walking in small circles around the living room most of the time when she is not in too much pain and she tries even when she in pain. It is so hard/sad to watch. She makes little whimpering sounds all the time while walking. Can't watch much on the TV because she thinks it is real and is easily scared by what is being said on it.
Seems like everything is physical now. something new every day. She is having trouble swallowing, if she sits her head leans to the side and there is little or no expressionless on her face most of the time.
In this late stage she still remembers my name and greets every person that walks in the door with a small smile. She can still eat if I cut her food up small enough and still loves ice cream.
My days are spent just sitting and watching over her to make sure she doesn't get hurt/fall and giving her medicines.
I can honestly say it is still a labor of love for me. It isn't easy but I can still get her to smile some times and that is what makes it possible to keep going.
I have found, and this is for myself, not H, that hydrocodone which is almost always mixed with acetominophen (sp) can cause headaches.
It can be ordered at any strength mixed with ibuprophen (also sp) instead of generic tylenol.
Again, for myself, I really prefer generic demerol, which I have had px @50 mg up to qid which I supplement with ibuprophen.
Now for H, I have had "good" results with ativan, which is my goto. For him, 1mg up to qid. You mentioned your Kathryn is at home- so is H.
N would like to try respiradol but not while H is at home so I stick with the ativan. I take it myself but cannot take more than 1/4 of that at the most bid. Even though H is younger than I am our tolerance is different. His N also says supplementation with benedryl is fine for H.
Reading your message again- maybe the generic demerol can help with the pain- it seems to have a nice numbing affect.
My goodness ......be off line for a couple of days and then to read all the heart break for Jim, Emily, Nikki ........it's so scarey because you ask when is my turn. To you all I send my prayers and more prayers and a huge OMGoodness !!!
So sorry your darling spouse is in pain. It must be difficult seeing your loved one in pain. You also must be a very strong person to take care of her knowing that improvement is not in the cards. My heart goes out to you and others that are in the end stage of this terrible condition. You and others are in my prayers every day.
anchor so sorry to hear of this rapid decline. the ABH is quite a strong drug imho/ DH did the same leaning head issue with this one full dose. we cut the dose and i give as needed not everyday. it helps but can accumulate quickly in the system. i know you are taking good care of her and she is lucky to have you. take care of youself as you walk this new stage.
Jim, I am so sorry Kathryn ( and you) are going through this. Please know that my thoughts and good wishes are with you both during this difficult time. <<<<HUGS>>>>
Kathryn is asleeep now so I am taking this moment to write an update, Hospice doctor has doubled the dosage for the hydrocod from 5/500mg to 10/500mg and increase the time for taking it to every 6 hours. She also takes the Ativan, Benadryl, Haldol (ABH) every six hours and they are talking about increasing the seroquel also but are going to wait a few days I think. I am stil;; ho;ding out hope that this isn't really the end stage but I have to admit my hope is taking a hard hit right now.
I was able to take her out into the front yard for a few minutes today to look at all the flowers I planted for her. She loves flowers and I put in 90 new ones. That got a little smile again.
Thank you all. She sure needs all the prayers she can get.
Hello all, I haven't been on the computer much because I have been watching Kathryn all the time. Here is an update on how she is doing:
She is continuously walking in circles in the living room and if she stops she falls asleep. She is hunched over and appears to be unable to straighten up and doesn't respond to you when you talk to her except to say ok or I don't know while continuing to walk in her little route. She is refusing her medicines most of the time now and she also has trouble swallowing now so I have assigned priorities to her Medicines and give them to her by that priority so she takes the most important ones first before she starts refusing any.
All of the Hospice people are great. It is such a big relief to be able to pick up the phone and call them when there is a problem and not have to guess should you take your loved one to the hospital or not. They are there for you all the time 24/7. The nurse and doctor decided today to double her pain medicines and explained to me that it is ok to give them to her as needed and to not worry about a strict schedule. That it may be easier to break them into smaller groups and give them to her just one or two at a time.
Watching her go thru this really breaks my heart and I have for the first time really reached a point where I wish it could be over for her. There is no way she ever wanted to end up like this. I don't know how much longer she can hold out or how much more of this physical downward spiral she can take but I hope she doesn't have to take much more of it. I would rather have her go to bed one night soon and just not wake up.
Lord knows I still love her with all my heart and I don't want to lose her, but I would rather lose her tonight than have her go thru any more of this.
Jim - please know that you are in my prayers. It sounds like you are doing all you can for your dear Kathryn. May God give you strength for all that is required in this dark time.
Jim, how sad. I certainly can understand how you feel. What she is going through is not "living". It never ceases to amaze me how strong some are near the end when they can continue on for so long. Prayers and thoughts of you and your dw. Please keep us posted when you can.
Jim - adding my prayers for strength for you and for peace and comfort for Kathryn. Prayers also for the hospice people who help you care for Kathryn. Your loving devotion is inspiring. God bless.