MartyT Posted January 16, 2014 Report Share Posted January 16, 2014 That's just wonderful, Kay ~ and what a precious gift you've given to your sister Peggy by persuading her to accompany you! I'm so grateful that you have some days like this with your mom. You certainly do deserve it, and I know it must just warm your heart. It's good for your mom, too, I'm sure. ♥ Link to comment Share on other sites More sharing options...
feralfae Posted January 16, 2014 Report Share Posted January 16, 2014 Kay, It must be a bit of relief to have your Mom in this softer state of being. Yes, I can certainly see how that would be a silver lining. I am so glad your mother was delighted to see you and that you could come away from these visits with a sense of enjoyment. I am sorry to hear about the Leukemia. Doug had Leukemia towards the end, a side effect of other chemotherapies. I am really glad you are going to see your doctor about your tendon. I am happier to hear that you are going to rest it today as much as you can. And I hope you will do that every day for a while. You can get back into shape once you are healed. Right now, resting and healing are higher priorities. Take good and gentle care, dear heart. *<twinkles>* fae Link to comment Share on other sites More sharing options...
mfh Posted January 16, 2014 Report Share Posted January 16, 2014 Dear Kay, What a gift you gave your sister and it appears she was able to receive it i.e. enjoy your mom. It is also a gift to yourself as you and your sister will be able to share these days now. My cousin is in a nursing home now with dementia and her adult children are, for the first time, truly enjoying their mom who lived in fear and therefore control and anger so much. She has shared a lot of these visits with me so I am pretty aware of the changes you are enjoying also. A gift in the midst of the pain of loss. I am so glad that these days are ones that allow you to truly enjoy your mom. Link to comment Share on other sites More sharing options...
enna Posted January 16, 2014 Report Share Posted January 16, 2014 Oh dear Kay, I am glad that you are enjoying some good days with your mom. Your heart has been so kind through all of this. I am glad that you are seeing the softer side of your mom - a long time coming. Continue to rest your ankle. Thinking about you. Anne Link to comment Share on other sites More sharing options...
Mary1063 Posted January 17, 2014 Report Share Posted January 17, 2014 My heart goes out to you Kay. I will say more at a later time, I'm headed to try to sleep as I'm sick and exhausted. Hugs... Link to comment Share on other sites More sharing options...
kayc Posted January 17, 2014 Author Report Share Posted January 17, 2014 Mary, we continue in prayer for you, I know you haven't been well enough to share much, but we continue to be here for you whenever you are able to be here. Sleep is good! Anne, Marty, fae, Mary, thank you. It is a blessing to see the side to my mom that we never had before. She fixates sometimes on things, like decorations on the wall, and makes of them things that aren't, which is okay, it's like she's entering her own little world. I find her world seems to be one of safety so it is okay, she seems happier and less intense, not angry and controlling like she always was. So if she thinks it's been 700 years since such and such, or think paper birds are something else, that's okay. We just love her and want her to be safe and happy. There will come a day when she will be "made right" and all of her demons will be gone and her head will be clear...for her that day will come in her next life, but I'm glad to see some comfort come to her in the now. Link to comment Share on other sites More sharing options...
kayc Posted January 24, 2014 Author Report Share Posted January 24, 2014 I went to see my mom yesterday, she's gone downhill tremendously this week with her dementia. She talks in nonsensical loops. You really can't have a conversation with her. Nothing makes any sense or has any correlation to anything you say to her. It's like she's gone and I can't reach her. She ate two tiny bites of her lunch, that's it, I couldn't get her to eat any more. I can't tell you how I'm feeling, but between that and other things I'm going through...it's a bit much. I didn't sleep last night, I'm in pain from my ankle and can't walk right now, my allergies are bad right now and my mind is racing. Not doing well. I wonder if my mom will seem better next time or worse. I've noticed dementia can float in and out, not like it's ever "better", but has it's ups and downs along the decline. Hard to put into words. Having a hard time with this. Link to comment Share on other sites More sharing options...
mfh Posted January 24, 2014 Report Share Posted January 24, 2014 I went to see my mom yesterday, she's gone downhill tremendously this week with her dementia. She talks in nonsensical loops. You really can't have a conversation with her. Nothing makes any sense or has any correlation to anything you say to her. It's like she's gone and I can't reach her. She ate two tiny bites of her lunch, that's it, I couldn't get her to eat any more. I can't tell you how I'm feeling, but between that and other things I'm going through...it's a bit much. I didn't sleep last night, I'm in pain from my ankle and can't walk right now, my allergies are bad right now and my mind is racing. Not doing well. I wonder if my mom will seem better next time or worse. I've noticed dementia can float in and out, not like it's ever "better", but has it's ups and downs along the decline. Hard to put into words. Having a hard time with this. Good morning, Kay, I know your visits with your mom are becoming unpredictable now. I know how difficult that is. I used to call dementia (when Bill was sliding away) the disease of 10,000 good-byes. Every time I would see him even when I was gone from the room for a minute or ten minutes it was a good-bye because I never knew if he would know me ten minutes later. He always did know me and as you say, dementia patients seem to float in and out. I would have a lucid conversation with Bill for five minutes and then he was gone again knowing me but not making sense. Another good-bye. I do know how difficult it is and I reach out to you as you walk through this with your mom. It is extremely difficult...like she is there but not there....alive but not alive. I know, Kay. I know...and you are not alone going through this. Link to comment Share on other sites More sharing options...
kayc Posted January 24, 2014 Author Report Share Posted January 24, 2014 You put it so well. It helps to know someone understands. Sigh. Link to comment Share on other sites More sharing options...
enna Posted January 24, 2014 Report Share Posted January 24, 2014 First of all, dear Kay, I am so sorry that you are not feeling well. Lack of sleep, a painful ankle, allergies acting up, and your mind racing are a bit much – one of these things would be enough! We do get our sleep in doses even though it’s not the best way – naps are really wonderful and I hope you listen to what your body is telling you and take a nap today. I am sorry that you did not see your mom in a better way yesterday, Kay. I know how hard it is for you to be seeing all these changes. I can remember shortly after I came on the forum Mary telling me about her seeing dementia as “the disease of 10,000 good-byes.” It really helped me to understand that Alzheimer’s disease changes in a person from hour to hour, day to day… I wish I had words to comfort you but we both know that our words are so limiting. What I do have is a listening ear, an open heart and time to sit and be with you in silence as you go through these most difficult changes. I am here and it was you who said over and over again that our forum helps us to not be so alone. So dear friend, you are not alone. We are all here holding your hand. Anne Link to comment Share on other sites More sharing options...
mfh Posted January 24, 2014 Report Share Posted January 24, 2014 Kay, as I was reading your post and Anne's again today, my mind traveled back to one conversation I had with Bill about two weeks before he died. It was one of those brief windows that opened and I shall treasure it as long as I live. I can still feel his arms around me just as if Alzheimer's never visited our lives. Grab those lucid moments even if they are one minute long. They become treasures to hold in your heart. I just got an email which I get regularly from this site each with new topics. You might find it helpful to scout around in this site. http://www.alzheimersreadingroom.com/ Mary Link to comment Share on other sites More sharing options...
feralfae Posted January 24, 2014 Report Share Posted January 24, 2014 Dear Kay, Oh, I am so sorry for your pain and for the grief you are already feeling as you watch your Mom escaping from this life in slow steps, and the worst is knowing that there is nothing you can do to pull her back into this life from which her awareness is leaving. I am so sorry. I hope that you are remembering to take very good care of yourself in the midst of the sadness. I wish you could find a way to just stay off that tendon for a couple of weeks. Could you use crutches or a cane to help you get around inside the house? Oh, I wish we could all be there to take care of you. And trying to keep the fires going to stay warm when you need to just stay snugged under a blanket and resting doesn't help, I know. Watching the gradual decline of anyone we love and knowing that we cannot help them, and that we must endure this time of letting go is so hard. I am holding you in my heart, and sending love and *<fairy dust>* to you, and more {{{hugs}}}. I will be home until about noon if you want to talk. Much Love, fae Link to comment Share on other sites More sharing options...
kayc Posted January 24, 2014 Author Report Share Posted January 24, 2014 I'd been doing better but alas was on my feet too long yesterday with the long drive, etc. I wasn't expecting to feel the sharp pain this morning! Mary, I'll look at that link, I've been to their site before. My mom has Lewy Bodies instead of Alzheimer's but a lot of it is similar. Link to comment Share on other sites More sharing options...
kayc Posted February 14, 2014 Author Report Share Posted February 14, 2014 I haven't posted lately about my mom, but that doesn't mean she isn't on my mind...all the time. I went to see her Tuesday. She talked about protecting fleas. Her talk is nonsense most of the time. She looks like she knows who I am but it's been a long time since she's said my name. My neighbor was with me, she thought he was my husband. I reminded her that I'm not married, my husband is dead. She doesn't remember him, that's hard. She loved him. Tonight i watched "A Vow to Cherish", to me it was better than "The Vow", I couldn't help but cry, it was so poignant. Someone I know's mom has Alzheimer's, his mom doesn't know him any more and she can't talk. He says he doesn't see her much because it doesn't seem to do any good and it's hard. I think we don't know how much gets inside of them, that we should anyway, who knows. I understand how he feels though, I've had friends die from it. I'd go see them and they were really out of it. It's the hardest thing. It's like you lose the person bit by bit. Once in a great while they can show up again for just a minute. It's just the strangest disorder. I'm feeling very contemplative tonight, my heart is full and heavy. Link to comment Share on other sites More sharing options...
mfh Posted February 14, 2014 Report Share Posted February 14, 2014 Kay said: "Someone I know's mom has Alzheimer's, his mom doesn't know him any more and she can't talk. He says he doesn't see her much because it doesn't seem to do any good and it's hard. I think we don't know how much gets inside of them, that we should anyway, who knows. I understand how he feels though, I've had friends die from it. I'd go see them and they were really out of it. It's the hardest thing. It's like you lose the person bit by bit. Once in a great while they can show up again for just a minute. It's just the strangest disorder." Dear Kay, I do know how difficult it is to see your mom bit by bit lose her abilities. I think I have said here before, I call Alzheimer's the disease of 10,000 good-bye's. One day it is good-bye to knowing how to brush teeth; then put on a sock and so on. Suddenly one day, Bill could brush his teeth again but never again after that. It is confusing and cruel as those times when the patient is present or recaptures a skill hook us and our emotions baiting our hope. It is exhausting and I used to say to friends during the days when I was helping Bill that I felt like I was being bounced around a room. I agree, however, we do not know what is getting in there and to walk away even though it is hard to be present...is, for me, not a solution to either person. Bill's mom died with Alzheimer's and his father visited 3 times a day to the end and for 7 years she did not respond or know who he was. The nursing home was just steps from their house so he would go over and just sit there. I personally feel his mom knew his dad was there. I'm feeling very contemplative tonight, my heart is full and heavy. Link to comment Share on other sites More sharing options...
kayc Posted February 14, 2014 Author Report Share Posted February 14, 2014 I agree. My grandmother suffered a massive stroke that left her a vegetable for I think 13 years. Every day my grandpa would go to her nursing home and hold her hand, and talk to her, and read the grandkid's cards to her. Such devotion! He was only a couple of miles from there, so that made it easier. Link to comment Share on other sites More sharing options...
kayc Posted February 18, 2014 Author Report Share Posted February 18, 2014 Missing my mom so much. It's hard since I can't call her inbetween visits and I'm hampered by gas $ and road conditions, I can't just drive down there any time I want and visit her. I worry that when the day comes that she's gone, I will regret that I didn't go more often. Yet even when I come, we can't have a real conversation. But I wish I could just see her right now, and hold her, and whether she makes any sense or not, just be with her. It's so danged tough! I feel these thoughts each and every day. Sunday is her 92nd birthday and she won't even be aware of it. Link to comment Share on other sites More sharing options...
mfh Posted February 18, 2014 Report Share Posted February 18, 2014 Kay, I am so sorry for pain. I do understand. When Bill was in the hospital (our attempt to get him able to walk so he could come home -an attempt that failed miserably, I fear) I would go every day that it did not snow-it was February and March in Wisconsin (It was 60 mlles each way but good roads...and i "knew" or thought I knew it was short term...I thought every week he was coming home. Anyway, MOST days when I got there he was sleeping and I sat there for a long time...hours....and watched him sleep. I do not know if he even knew I was there even if he happened to waken. But I felt good being there. It is discouraging and painful....and difficult. On a rare occasion he would be totally lucid for a bit of time-minutes- and that kept me going. It is difficult and my heart reaches out to you because I know the pain of sitting there or not being able to due to weather, roads, money. ....then you sit home and think about her often. I had to come to the conclusion that I was doing my best and you are doing your best. It is all we can do. And in our "never enough" society, we think what we do is never enough but it is. It has to be. Time is not the same for your Mom as it was not the same for Bill. It is harder on you probably than your mom-we will never know....just know I reach out and understand how difficult it is. Mary Link to comment Share on other sites More sharing options...
enna Posted February 18, 2014 Report Share Posted February 18, 2014 I so understand what you are saying, Kay. I wish there was something I could say that would comfort you. When Jim was in Hospice hospital to correct a bladder condition just weeks before he died I missed him so much. When I was home I couldn't sleep even though i was sleep deprived and told I had to get sleep. When it was time for me to bring him back home I didn't want to leave his room even through he didn't know I was there most of the time. I am here for you and listening. Anne Link to comment Share on other sites More sharing options...
kayc Posted February 24, 2014 Author Report Share Posted February 24, 2014 Skipped church today so I could go visit my mom on her 92nd birthday. I had made her a birthday card and read it to her and she said, "Oh I wish Kay could see this!" and I said, "I AM Kay!" She smiled real big, "Oh you ARE Kay! Well good, you can see it then!" Sometimes dementia can be so funny. The caregiver said she needed a new nightgown so I went out and bought her one and brought it back to her. Hope they don't lose it. It was a good visit with her today. Link to comment Share on other sites More sharing options...
feralfae Posted February 24, 2014 Report Share Posted February 24, 2014 Dear Kay, I am so happy to hear you made it to see your Mom. How wonderful that it worked out for you, and that all the pieces fell into place. And even though it is bittersweet, your conversation made me smile. I am truly glad you are able to smile sometimes through this. You sound so very much better, as though a load has been lifted from your heart. I am sure it has. You now have peace of mind for a little while, knowing you did make the visit and did get the new nightgown. Whatever happens is in G*d's hands, and you have a wonderful visit memory from this birthday visit. I am relieved and happy for you, knowing your heart is peaceful and you had a very rewarding day, doing things your way. Bless you for following your heart. *<twinkles>* fae Link to comment Share on other sites More sharing options...
mfh Posted February 24, 2014 Report Share Posted February 24, 2014 Kay, I am so glad about your visit to your mom today. Dementia can indeed swing in different directions. About two weeks before Bill died, he was in the hospital, and we had a conversation that was totally lucid. It was our last conversation which I did not know at the time. But dementia is like that....and I am delighted you and your mom could celebrate her birthday and that she knew who you were. A good decision. Peace Mary Link to comment Share on other sites More sharing options...
kayc Posted March 7, 2014 Author Report Share Posted March 7, 2014 Hard day today. Mom staring at wall, unresponsive, didn't know me, couldn't converse at all, muttering nonsense, no glimmer of "glad to see ya", nothing. Really tough. Link to comment Share on other sites More sharing options...
MartyT Posted March 7, 2014 Report Share Posted March 7, 2014 Link to comment Share on other sites More sharing options...
mfh Posted March 7, 2014 Report Share Posted March 7, 2014 Kay, I am so sorry. I know that kind of feeling. Link to comment Share on other sites More sharing options...
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