Not Sure Where To Post This

[sinc86]

Kay - You are going through such a tough time right now, but I doubt you will regret the time you are spending with your mother. With the changes in her, you are finally able to have good pleasant conversations with her, at times. Those are moments you will cherish always. The love and care you are showing her through your continued visits is wonderful.

[kayc]

Thank you, I enjoy our visits although sometimes it's bittersweet.

[kayc]

I had a nearly two hour appt. at a doctor yesterday (seeing him was only two minutes of it), and then visited my mom, met with her PT, and then they had someone there playing musical instruments and singing. He sang Amazing Grace, How Great Thou Art, I'll Fly Away, and many, many other songs. Most of the residents slept through it but I had my mom in her wheelchair...she cried and said she just wanted to die. It's always hard to see her cry and I always took such statements as negative, but perhaps it's that she wants that "something more" that eludes us right now. I tell her not to lose hope, that God will come for her and she will be made well and we'll all be joined together again. I don't remember ever seeing my mom so tearful, perhaps its some medicine's effects, perhaps it's some expression she's unable to voice in words she can't reach for anymore.

I came home much too exhausted to go to my Bible Study last night. It takes something out of you when you hold them and they cry.

[mfh]

Kay, when my Mom got into her 90s she would tell me she can't wait to get to heaven and see her siblings and parents. When Bill was sick, he would tell me he wants to die many times a week. With my mom it felt more like a desire to see her family there. With Bill it felt like wanting to escape the Alzheimer's that invaded his life. I say this because it is sometimes hard to know (for the patient or us) what motivates those words. I would just say to Bill...I know you do, Bill...and I will miss you so much but I understand or something like that. I know it is hard for you and I also know you have to be so proud of how you are dealing with this and loving your mom as she enters this chapter of her life.

[kayc]

I went to see my mom yesterday and shortly after getting there, they took her to the bathroom and then some EMTs came and got her to take her to the hospital. They said they suspected UTI. My brother met them over at the hospital. They were all getting on my mom for not producing a UA, well hell, the people at the care center had just had her go to the bathroom! Poor lady is being faulted for being stubborn when she doesn't have anything more in her! And she can't tell them that, she doesn't even know what's going on! So I'm texting my brother back and forth and my stupid phone freezes up. Meanwhile, I'm having problems with my toes, really worried, one is super swollen and discolored and started getting red streaks coming out from it. Then one on the other foot, same thing. I tried to get to the doctor Wed. and she wasn't in. Tried Thurs. and she was double booked. Called back and tried for Fri. and they said no can do, get to urgent care. So I call my insurance and start heading back towards town (I'm 55 miles from urgent care). Meanwhile, my brother emails and says my mom's blood sugar is dangerously high. I couldn't get my response to "send", it was stuck, so I call him and tell him it's no wonder, the care center is feeding her chocolate shakes and the first ingredient is high fructose corn syrup. I'd told them to give her Ensure instead but they didn't listen to me. My brother said he'd make them do it, meanwhile they catheterized my mom, she was in excruciating pain and saying she wanted to go be with the Lord. I wanted so bad to go be with her, but couldn't I'm stuck waiting in the hospital's other section for hours. Finally I get seen, head across town to get the Rx and OTC medicine and head home, arriving at 8:20 pm. Today I have to take my sister back to town but told her it'd have to be a quick trip as I'm supposed to be on bed rest the next few days. I will do NOTHING else for anyone until I am well! And I hope and pray this antibiotic does it's job. Being Diabetic it's scary. Poor mom, I told her I'd come see her again early next week, I hope I'm better by then.

[feralfae]

Dear Kay,

Just when I was wishing you some stress-free time, and now you are in the middle of another terrible muddle. I feel so bad for you, and also feel that you are trying to do TOO MUCH!

And you are taking your sister to town. You are incredibly stalwart, and I hope you are remembering to take good care of yourself first as much as you can.

I am so sorry to hear about your mom. This is a stressful time for you, with her not that close, and you having your own medical issues. I am always yelling at my girlfriend Karen when she has a foot sore or anything red on her feet. She is also diabetic. If you have red lines, that is certainly serious, and I am glad you are on antibiotics. Is there anyone to help you so that you can be more on bed rest and less on duty? Will topical antibiotics help at all with your toes?

I am sending lots of {{{hugs}}} and keeping you in prayer.

*<twinkles>*

fae

[kayc]

My dear fae, the doctor has me on antibiotics (ten days). The red lines are growing more faint but the toes are still discolored with infection. This will take a while to respond. If it doesn't show signs of improvement I will have to go back in next week.

You would be proud of me. I wouldn't let my sister talk me into leaving early, and when I got to town, I laid on the couch and put my feet up for an hour until everyone was there and ready to go to lunch. After lunch I told my sister (who was trying to talk me into shopping) "come on, let's go, I'm not even supposed to be here." And we went home. The entire trip took me six hours but I spent 1 1/4 hours with my feet elevated. I am down for the count now. My neighbor invited me out to eat tonight and I declined. I guess people just don't get it, no matter how much I tell them, but they don't need to get it, it's up to ME to tell them NO! They aren't used to that but they'll have to deal with it. I want to save my toes!

[mfh]

Though I hoped you would have stayed home today, I am glad you said no to shopping and stretched out. This is serious stuff, Kay, so please do stay home and stay down. People do not comprehend the fatigue and pain I live with either so I understand how tiring it gets to say no or say you are tired or sick but like you said, they do not need to get it. Your real friends will be around. the others you do not need. Now stay home!!! Or you know I will send Anne over there and when she stands in your doorway....it won't be a pretty picture. Remember she threatened me once...said she would come to my door....I quivered.... and I got the message and stayed put.

[feralfae]

Mary, you have me laughing!

Kay, better do as she says. I hear Anne can be a really stern person when necessary. See? — she scared Mary!

Kay, I am truly glad you are home and resting.

fae

[enna]

First of all, Kay, as I said in another post I'm so sorry that your mom is having these difficulties. And I so agree with you that people should have much more sympathy and tenderness when they are dealing with our elderly. Shame on them.

I am glad you are now taking antibiotics and will rest for the next several days.

Now, in defense of myself . . .

Kay, I am really a very gentle, caring, sensitive, and loving human being and I have NO idea what Mary is talking about. However, if and when it is necessary, I know how to deliver the necessary sternness to someone who has NOT learned how to care for herself in a loving and gentle way just as she advises others to do.

I am so glad that you were able to meet with your sisters and have lunch and then go home to care for yourself. I hope you will be able to rest and keep your feet elevated for the weekend. It does take a few days for the antibiotic to work.

Oh, by the way ~ I do know where you live. he he hee

[feralfae]

"Oh, by the way ~ I do know where you live. he he hee :D"

LOL

[kayc]

Too many of you know where I live! And I suppose you'll be on Google Earth looking down at my house to see if I'm up and about...good thing I have trees covering your view, haha!

[MartyT]

[kayc]

Monday before last we thought my mom was "on her way out", she really seemed like she only had days to live, gaunt, cheeks sunken in, saying over and over she just wants to go be with the Lord. I told my family if they want to see her they need to come (they hadn't visited for six months). We all came to visit last Friday and lo and behold she was up in her wheelchair, smiling, joking, singing "Crazy"! She totally made a liar out of me and none of them will believe me when I tell them anything anymore.

Yesterday I visited and she was worse again, not as bad as that Monday, but not good...she was able to be up at the table and drank a bit of Ensure, but muttering over and over "I don't understand", she didn't know me for the first time, didn't show glimmer of recognition. It's not unusual for her to mix people up or not know names but always show familiarity, not yesterday. It made me understand how it is that some people don't visit their dementia loved ones...but I still feel if we visit, whether she knows us or not, it gives her caring and attention that can't help but be of solace to her. Perhaps she can't respond, but she's there, someone inside of there. When she said she didn't understand, I'd tell her it's okay, she doesn't need to understand, just be, and it will be all right. She said "We'll see" and smiled and I responded back, Yes, we'll see.

[mfh]

Kay, when my dad was dying, Bill and I made trips to see him often but when the call came that he would not make it to morning, we packed up our then Golden and at 3am we went to Chicago. When we arrived, he was sitting up eating cereal. That happened about 3-4 times...can't recall. I totally agree with you that even when your mom does not appear to know you, none of us know what is really going on and she gets care from you and comfort. If a person in a coma can hear us, who is to say she is not getting it that you are there. Good for you, Kay.

[enna]

Kay, you continue to inspire me with your kindness and understanding of others in your life. It is my understanding that it is not unusual for those who are very ill to rally and have good days. When Jim was at the hospice hospital (for treatment of a bladder infection) a few weeks before he died a few of the kids from out of town were visiting and he was sitting up sipping on a beer that his son had brought in laughing and joking with them. A few hours later he had no idea that they were visiting or who they were. Jim had several of those days before he no longer could talk and when I brought him home he was with me for less than two weeks. I have no doubt in my mind that even if someone cannot speak or even see they know who you are and do find comfort in your voice.

My prayers continue to be with you during these hard times.

Anne

[kayc]

It's just amazing to me that my siblings have not seen her like this, the once every six months that they visit she has good days! I think my brother has seen it all though because he comes frequently. He's been there for her in the hospital, feeding her, talking to doctors on her behalf, handling the care facility, etc.

[kayc]

I got an email from my brother, he said she's on her way out, so I rearranged my schedule and am leaving to go see her this morning. I don't want to miss seeing her again. I already planned to go at the end of the week, so will then too if she's still alive.

[mfh]

Kay, I travel with you and I know others do also. Mary

[enna]

I am so sorry to hear this, Kay. God's speed. You have the entire TRIBE with you at this time. Anne

[MartyT]

[kayc]

thank you, your support means a lot to me. Today was the roughest day so far (to me). She's in a coma-like state and can't respond, can't wake up or talk. I stayed with her for two hours, just stroking her and talking to her. Just before I left I started crying as I realized I might not see or talk to her again. It's really hard. She tried to open her eyes and couldn't fully open them or speak to me, but I knew she must hear me so I struggled to get composure and told her I'd be okay, it's just I'm going to miss her. I told her she's going to go be with Jesus and her mouth turned up just the tiniest bit, I know she was trying to smile and couldn't. It made me wonder if she'd had a stroke or something that she can hear but can't respond? I pray she doesn't have to stay like this. She's sleeping around the clock. My mom has always been there, you know? I know it's been tough over the years, with her mental illness, but...it's so darn hard letting go.

[kayc]

I just had a really hard evening. I called my sister Peggy to let her know how it'd gone, and I didn't even get a chance to tell her, and she started exclaiming I "shouldn't" feel that way (sad), that I "should" just be glad for her. I told her I AM glad for her, but it's okay if I grieve too! She said "No, you shouldn't feel that way, you should just be glad for her." she then said, "It's not like she was ever a mother to you anyway!" I ended up telling her I'll grieve how I damn well please and I have to go and I hung up.

I've had this conversation with her before, about how inappropriate it is to invalidate someone's feelings or experience. I've always been supportive of her. When her dad died, I was totally supportive of her and her grief for him (even though he was never in her life), I did not tell her "It's not like he was ever a dad to you", I listened, I cared.

I had a talk with my little sister Julie, and she feels as I do and she said she doesn't think Peggy and Polly have forgiven mom or let go of stuff from the past. She said they haven't had the relationship with her that we have because of it. They haven't allowed themselves to see and experience the person she's become the last couple of years on medication. Julie and I have seen a glimpse of the softness she was designed to have and didn't have throughout our lives. We know when we go to heaven she'll be made right and be the person she was meant to be, healed and whole.

I called Peggy back and told her I didn't want anything between us, but I'd needed some space. She started denying what she said and I didn't let her, I told her she did tell me that and that invalidates my feelings and that I agree we need to be happy for mom when her time goes but I also will grieve and miss her.

Is everyone's family this complicated?!

[enna]

Kay, I’m so sorry that Peggy does not allow you to have your own feelings about all of this. You asked if all families are this complicated and I would say that each one of our families have their own quirks. Your story is unique to you but we all have stories and some of those stories could make the hair on the back of your neck stand up.

You are a gentle, forgiving person who chose to accept your Mom’s situation as it is now not as it was in the past. I have no doubt that your mom knows you are sitting with her. She is listening to your voice and probably understands more than anyone thinks. I have been told that even if a person cannot speak they still can hear. Hearing is the one sense that goes last when someone is dying.

It is good that we tell the dying person that we will be okay. It is also good to let them know that it is alright for them to leave this earth and we will be united again.

I pray for you and your family as you take this last journey with your Mom.

Anne

[mfh]

Kay, I believe every family has its complications...all kinds. You handled this well. Her behavior is the last thing you need. I am sorry.