35. Here is an update on Kathryn. For a while she seemed to be holding where she was for the most part but now she seems to be getting worse again. I don't know how she can get any worse than she is now. There isn't anything else to lose.
36. Kathryn hadn't been eating good for the last couple of weeks then last week she started eating better but seems to have gone back to eating less the last few days.
37. She walks around the house most of the day so she is able to walk but she has trouble on the stairs. It may be due to vision. It is almost as if she has lost her depth perception because she looks like she is feeling for the step with her foot before moving her weight.
38. She is now completely incontinent now. She doesn't know when she needs to go to the bathroom. She will go in her depends and doesn't know that she has gone. When I ask her if she needs to go she will say no or that she has already gone. Even when I smell something and ask her if she needs to go she will still say no.
39. She has trouble sitting down and getting into bed most of the time. Doesn't seem to matter if she is trying to sit on the toilet or the sofa. I am not sure if this is because of vision or if she isn't able to formulate all the movements required to bend her knees and sit down.
40. I installed rails on the toilet a while back and it helped her in sitting on the toilet but now I have to put her hands on the rails and tell her to sit down and even then she has trouble sitting down. I also have to help her take her pants down because even a simple instruction is too difficult for her now.
41. lately (last couple of weeks) when I talk to her she doesn't seem to hear me. She just stairs down toward the floor. After a few tries she will look at me sometimes like she just isn't there. I will ask her to do something and she will say ok but will not move at all. She will just continue to do what ever it is she was doing. This can go on for a few minutes.
42. If I ask her to come with me and there is something between us she is confused and can't figure out to go around whatever it is. She just seems to be on auto-drive with no where special to go.
43. .Sometimes she seems panicked and after a few minutes of questioning her about different things that might be wrong she has said she can't breath. I wanted to take her to the hospital but she doesn't want to go and becomes upset and starts crying. She cries a lot but can't tell me what is bothering her
44. At this point the only thing I can say she can do is walk around in the house and if I cut everything up she can still feed herself.
45.She doesn't want to take her medicine any more and taking them really upsets her. I told her I will not make her take it but that I will do my best to get her to.
46. She also wants to go home a lot. She no longer knows this is her home.
47. She is sleeping more. She will now sleep though the night (10 hours) no problem and sleeps some during the day also.
48. Her talking is becoming more and more compromised. She can only get out two or three words now of what she want to tell me.
49. Kathryn has lost another 8 pounds over the last two weeks.
50. Kathryn no longer knows who I am. She does still know my name doesn't know we are married. She things I am just a nice guy that takes care of her.
On Kathryn's last visit prior to this one she wasn't able to do anything on the MMSE at all.
I can no longer take her to the theater and had installed a home theater and we would have our movie night at home but now she can't even watch it at home. It was one of the last things we were able to do together with enjoyment for both of us and now that is gone too.
I can't put the whole list in one box any longer. It is too many characters (over 1,100 too many). If you want to seee the entire list you will need to do a search on topics and type in "Kathryn's List".
Jim, I'm sorry that things are getting more difficult for Kathryn and for you. It's a long, lonely battle, and you are both in my thoughts and prayers.
mary75*, things are getting difficult for Kathryn and she needs all the prayers she can get. Even though I do believe in the power of praying I am finding it hard to pray anymore myself. My fiends tell me they are praying for Kathryn and they have had her added to the prayer list at their respective churches. I really do appreciate it and I thank them and you and everybody else that prays for Kathryn. I am losing ground in the faith department myself right now.
Mimi, I appreciate the kind words. But hero? Me? No, I don't think so. A hero is someone that rushes into the fire while everybody else is rushing out, knowing the danger, like the fire fighters in New York. I assure you I did not rush into this and I did not know the problems ahead of me. It was thrust upon me and I am dealing with it to the best of my ability.
I am just like everyone else on here doing the best we can to keep our Loved Ones safe and give them the highest quality of life we can for the time they have left.
JimB, it was hard to read your post knowing that my future with hb will look similar one day. I admire your strength and openness. When you find it hard to pray, just say "help me God" he will. I will be praying for you and Kathryn in these difficult days.
I remember feeling utterly alone throughout the whole Alzheimer's journey - without any sense that my prayers were even being heard - and that was rock bottom for me, an Irish Catholic. When Eric died and was at peace, I had the sense again that he, we, have a loving God. Not making any comparison, but I've read since (in her own journal) that Mother Theresa had the same feeling of an absence of God, but that she just kept on acting in faith.
Mary, good thoughts......acting on our faith, at times in very small steps..... The "absence of God"......called the "dark night of the soul".....is very real.....a very difficult time when feeling alone and without contact of the Supreme......I've been there...4 years of soul searching and wrestling? in my 16 yrs of Caregiving for my dear Hubby, those 4 years were the most difficult ...!!. At this stage Hubby doesn't kmow me anymore...and I no longer "affect" him.....nothing sadder than that....
Anchor 20 Reading your post about your spouse brings back several memories of that final journey. First and foremost know that God's promise is to never leave you and believing that is the first step. He never leaves us but sometimes He remains silent when we feel that we most need to hear from Him. His silence is very stressful because it causes us to doubt our faith. Knowing from my own experience I was very stressed because as my wife continued to decline and suffer it seemed that He was not listening but the truth was He knew exactly when death would come and He stuck to His plan without any apparent regard top what we were asking. In the end death occurred exactly like it was supposed to happen. She passed very peacefully and was totally ready to go. My faith has been strengthened beyond anything I can explain since her death. I pray to God many times a day and my peace comes after I pray so something good has come of this journey and even though she is in heaven I believe she is well and happy. These are the things I am reminded of when I am having a bad day. May God bless you both and keep up your faith it will serve you well in the future days to come. Bruce D *
Jim, I too am sorry to see how much your dear wife has declined. You are braver that I, I never could bring myself to write it all out like that. In the later stages I found it helpful to concentrate on what he could still do. The list was shorter for sure. It sucks, and I am sorry for you both.
Andy, while I do find it hard to pray I haven't really lost my faith. It does have a good size dent in it I am sure. It's kind of odd I guess because I do still talk to him. I ask him to do what ever is in Kathryn's bet interest. I think it is harder for me because he let this happen to Kathryn.
Mary75*, You are right I do feel along in it but I am comfortable being alone in it. I can't explain that but I am. It has never been easy for me to ask others for help.
Bruce D*, I hope I feel the same way when Kathryn is gone but I can tell you right now I am not ready to loss her I don't think I ever will be. I don't know how you got thru it. Every time I think about it I feel like I have been stabbed in the heart and just can't fall down and don't know what to do. At those times I feel so lost and helpless. I have never felt that way before in my life. I need to fix it and I can't and neither can the doctor and that is very hard for me to deal with.
JudithKB / Nikki, I started the list because there wasn't room for me to write everything I wanted to talk to the Doctor about about on that little sheet they gave me to fill out and if I didn't write them down I wouldn't remember everything so I started the list to send it to the doctor a couple of days before each visit. The Doctor says she wishes everybody could do it. She says it helps her to provide more answers and advice at the visit.
One day while writing the list I decided to put it here too. That way maybe I could return a little to others here for their use. Its just a small way for me to provide some little assistance to others as I have been helped by those who came here before me.
Hang in there. I remember when I dropped DH off two years ago for a two hour follow up with the neuropsych. The office called my cell right away to come back to pick him up. They could do no testing at all. He could not answer their questions or do anything they requested. Definitely a very harsh reality for the caregiver. My thoughts and prayers are with you and your wife.
Anchor 20 Right now what you are feeling is the anxiety of knowing what is about to happen and frustration of knowing you can't fix it or prevent it from happening. It is going to happen and you have to accept that and we are just not wired to let things happen because ever since our loved one became ill we have cared and comforted them any now we can't . Their future is in God's hands and out of our control. The feeling of being stabbed in the heart is the normal part of losing your loved one who was your life and now nothing. May God bring you peace. Bruce D *