Hello Dear Friends,

Mom's hallucinations, agitation, non-stop talking for hours--all of it--stopped on Risperdal. I thought we'd finally found a pill of peace because everything else we've tried seemed to make her worse. But her abilities have been stopping as well, and now she's just gone to bed. It's all happened in a couple of months, but it seems overnight to me.

Two weeks ago she was in the hospital for hip pain. (Thank God it was muscular, not broken). They couldn't believe we didn't have a hospital bed at home so got that ball rolling. They ordered physical therapy which would consist of functioning: rolling over, getting up, wheelchair to chair transfer and such. I've had a heck of a time doing it myself and my back is shot.

The therapist finally came last Tuesday and I'll be darned if she didn't do it for him. It was hard but she tries. She'd smile and faintly clap her hands at her accomplishments. I didn't know what to call my tears at that point. He said it is common for them not to do it for family members, but it would help to call her by name and change my tone. It's hard for me to "push" her but I know she needs it. By the way, still no much-needed hospital bed.

Thursday was the follow-up appointment with the primary, which was a conference with me alone because there was no way I could have gotten Mom out of the house anyway. Lots of business to discuss. Within two hours of the appt, the Hospice Chaplin was at the house to sign us up. Wow.

Friday was Grand Central Station around here. Even the bug man showed up for our quarterly! Mom's blood pressure was only 80 over 40 so the Home Health nurse was trying to reach the doctor. Because of the low b.p. the physical therapist was limited. I was leaving messages to Evercare (Medicaid) about the bed and other supplies while the Hospice RN wanted them here now. The CNA came but I had already bathed Mom that morning. Whew, it was crazy but like the Chaplin said, the Calvary is here!

Saturday I received the incontinent supplies and hopefully today I will get the bed and a Social Worker comes. The supplies fit perfectly in the cabinet I had prepared. The Hospice RN laughed and called me "one of those" at Mom's no-door closet being so organized. I have all of her antique nursing things displayed which helps warm the hospital "decor" and tells everyone she is one of their own. It's a brotherhood thing, right Aitan? It always makes her feel good to correct her from saying she WAS a nurse to she IS a nurse. An Angel of Mercy. She's given mercy all her life. Where is hers now?

Me, I'm spinning my wheels during the days. Not sleeping much. I've catnapped for four days until last night I slept almost five hours. I'm numb and nauseated. I can't believe I'm losing my mama! But I have to believe it. Hospice said six months, two years, God only knows. I just can't swallow this lump in my throat. My eyes are swollen from the constant tears welled up. I had Janie (our caregiver) come yesterday so I could go to the beach, where I can revive my soul, but the sound of the waves drove me nuts. I couldn't stand it. I had to get back home.

Sorry I'm rambling. I just needed to feel closer to you and let you know what's going on. I couldn't get through this without all of you. No way!

Please pray for my mama.

sames u,

I'm really proud of you for getting hospice involved. You'll find them a lot of help and comfort.
Don't hesitate asking them about anything you think might be a help to you.
I'm sure you have a wheel chair but if not, ask for one. I found the reclining wheel chair a big comfort. I could recline it all the way down (Bill didn't like that so I didn't do it) but I would recline it enough that his head didn't droop forward when he dozed off in it.

One of the first things I did was to take advantage of the respite care. You'd be amazed how much five days can replenish your strength. It was hard to do, but when Bill came home form those five days, I was rested, relaxed and ready to start all over.

Use their volunteer help as often as possible. Just a few hours away helps.
Also I found that the side rail on the hospital bed helped. At first I couldn't use it because Bill would try to climb over it and I worried he would get hurt worse climbing over than he would falling out of bed. Falling our also reminds me, Ask hospice if you could have a "low boy bed". It lowers closer to the floor so if they fall out they won't have far to fall and are less likely to be hurt. I don't know about your mother, but with it lowered, Bill could sit up on the side of the bed but he couldn't stand from that low so I didn't have to worry about him trying to stand and falling that way either. It will also raise higher so it is easier to change them.

Keep coming and telling us everything that's going on. If nothing else, it helps to talk to others who know what you're talking about.
Best to you and your mother

As I read your post, my heart just broke for you. I don't know which is worse, all the frustration we go through while dealing with this disease or the heartbreak and helplessness we feel when they go into the final stage.
I am glad you have hospice in. They were such a comfort to me just knowing I had an extra pair of hands.
Keeping you in my prayers.

So many members have been helped tremendously by Hospice. I'm glad they are there to help you.
I'll keep you in my prayers, too.

I'm all for hospice. I've seen the support and respite they give to the caregiver as well as taking care of the LO's. Think of them as your knot in the rope as this stage goes on. And don't forget to come here and let us know how you are doing. This place was such a comfort for me during my FIL's time here. I still reach out as best I can to those still walking this journey.

Cyber {{{{{HUGS}}}}} to you from me.

Oh Sames U, I'm so sorry this all has to happen. Glad you have hospice to help, what a blessing. Please keep coming here and letting us know how it is going, we really care and want to be here for you as best we can. Some have walked this path and some of us will be there probably before we know it, so we'll help as best we can. Hang on and stay in touch, ~Kelly~

sames u,

You wrote: "Me, I'm spinning my wheels during the days. Not sleeping much. I've catnapped for four days until last night I slept almost five hours. I'm numb and nauseated. I can't believe I'm losing my mama! But I have to believe it. Hospice said six months, two years, God only knows. I just can't swallow this lump in my throat. My eyes are swollen from the constant tears welled up. I had Janie (our caregiver) come yesterday so I could go to the beach, where I can revive my soul, but the sound of the waves drove me nuts. I couldn't stand it. I had to get back home."

Making the decision to contact hospice is so very difficult and heartwrenching. I know it was very hard for me. But once they became involved their support became invaluable. I hope it will bring you some comfort and relief knowing you have good, experienced help now.

You are in my thoughts and prayers.

Thank you all for your kind words and prayers. We're in this together, I know.

We're doing okay. We got the bed! It's been a great help. Yesterday the air top pad for the mattress came. Mom doesn't have any skin breakdown but does have a little rash which may be from the Thrush, that we're treating with an Rx swish and swallow (although she just swallows) and an Rx cream for the rash.

Her b.p. is slowly coming back up. She has gone from standing for up to 90 seconds to actually walking some yesterday and the day before. That gave us all hope. They say Mom is not at death's door yet, but the clock is ticking. Boy, they tell it like it is, don't they?

And they tell ME like it is too. The Chaplin told me I've been so isolated I should go to the mall, shake someone's hand and say, "Hello, Human!" I'm that bad, huh? No wonder I'm always leery about posting on here and usually regret what I say. Thank you for being here and putting up with me. You people and my closest couple of friends have been IT. Literally.

You know what hit me? Not to get into religion here, but when the Chaplin prayed with us the other day, I realized I haven't held someone's hands in prayer since Grace last Christmas with my brother's family (other than saying the Lord's Prayer with Mom because she "likes that song.")

The Chaplin said he's a Catha-Bapta-Lutha-Palian. Ha. I'm somewhere in there, praying alone, out here on my patio. I told him about you, my support group "friends," and how, for so long all I've prayed about is AD! I pray for you as a group and individually through your trials. But far too often I just end up shaking my fists at God for all we go through. He laughed, yeah, little ol me, telling God all about it! God knows we're mad. See? This has been tearing me up but now I feel better. I tell you, isolation is not good for caregivers. We cannot do this alone. It affects every aspect of our lives.

I haven't told the family about Mom's decline. I haven't even talked to my brother since Christmas. My niece called when SIL's father passed away in April(?). I sent flowers. I'm tempted to just let him know when Mom passes but will probably change my mind. Mom deserves to see her son, right? And whatever his reasons for absence are, he deserves to say his goodbyes. When to call him is the question. Maybe when I'm a little stronger. I have a lot of work to do on myself, so they say.

This is all so different from when Dad died of cancer. Being "with" us we were able to say our goodbyes. Last night, tucking Mom in, I told her I was so sorry she is sick and will try to make her feel better. She put her hand on my face and said, "yeah." Is this how I say goodbye to my mama?

Well, I know there are no answers to my questions. I'll just take one moment at a time. Every day is different. Geez, every day I'm differnt! Nuts one minute, calm the next. I'm just glad you guys know everything I'm going through and because of YOU, I know I'll be okay. Thank you so much for listening......even when I'm as long winded as our Dear Jackie!

I love you all and I feel you with me.

Oh, sames u, I think we've all been in your position at one time or another. Caring for someone with this disease is the roller coaster ride from he**. Up and down and up and down -- I really can't remember having too much time when things were level or on a even keel. And the emotional toll on the caregiver is so great........the slightest thing can cause us to feel great sadness and loss, and we hang onto any small bit of improvement to keep from utter despair.

I remember feeling so very isolated, too, when I cared for my mom. She was a prisoner here because of her condition, but I was just as much a prisoner because I couldn't leave her alone. The only volunteer hospice could send me was at an inconvenient time of day so that was no help at all. My mom's major deterioration came after a fall when she broke her hip. I witnessed first hand the total confusion and fright she endured while being in the hospital and away from her familiar surroundings so I refused all attempts by hospice for respite care -- I couldn't deliberately put her in that position again (plus I didn't believe ANYONE could care for her as good as me .............)

Near the end, I was in pretty bad shape and truly felt I was at the end of my rope. But as you have learned through hard experience we caregivers seem to always rise to the occasion and keep getting up every day and doing what needs to be done regardless of how emotionally wrecked we are.

I'm so glad you feel you can come to this place an unburden yourself. I know how much it helps to have people listening who really understand what you are going through.

(((((((((((gentle hugs across the miles))))))))))))))

Just checking in to see how you are doing sames u.
Keep in touch.

Thank, Joyce. I'm sorry I haven't been back on here. With no one around for the long weekend I finally had some quiet time to let all this soak in.

Karenlee, your reply has been with me for days. You helped me..........rest! Rest my mind and my body. You blew me away because you said EXACTLY everything I feel. Everytime I re-read it, it was just what I needed to hear, again. Thank you. I'm feeling your hugs and am sending them right back to EACH of you.

My friend came over Saturday. She knows when I'm at a breaking point and asked if I've talked to you about all this. I said I had, and who has replied! I told her each of you had lost your loved ones--but are all STILL HERE! As soon as I said it, there was a rush through my heart for you ladies like never before. Like it just dawned on me?........it ain't over when it's over! I've known that. Or have I, really? I DO know this is one long road we're on and now I'm poking my head around the corner, seeing those big footprints of yours, and I've got to tell you, I'm scared! I know I have to follow you, but I'm scared.

I finally read through the "dying process"--all typed out, step by step. Then there's the grieving process--all typed out, step by step. Heck, I've grieved for Mom for eight years, step by every single step along the way. Where is OUR "process"? How do I find my own "process"?

I feel like everything is so balled up, I'm killing myself trying to figure out how to break it down. It's like everything I've learned over the years, all the experience of how to handle things, has just flown right out the window and I don't know squat! All I do know is I'm feeling everything like it's the very first time again. Yet, whatever Mom does, I'm thinking, is this the last time she'll do it? It's crazy thinking. But I just can't turn off my darn mind!

Maybe I had a little too much quiet time this weekend, ya think?

I don't even know what I'm saying on here, but I'm here.......ready to be blown away by you again.

Friends,
I realized, with my last sentence there, I'm putting high expectations on you for answers, where there really are no answers. Please forgive me.

I know in order to help someone through a difficulty in an earlier stage we recall our time with our own LO. I don't expect you to re-live this in more detail. You all have shown your love and support and just hearing your "me too" is my "enough" as Joyce says in her quote. I know you've listened...

.....and listened...and listened.....boy, I really got on a roll with that unburdening thing, didn't I?

***********
Hopefully the Hospice folks will be coming back today. We had a conflict between them and Home Health (under the same AD dx) and had to be discharged from HH, including Mom's physical therapy. We'll be re-evaluated with another HH today (under her heart dx) so we can start back up with the therapy. Hope it all works out.

I'll keep you posted.

I love you guys! Thank you for being YOU!

Sweetie, I'm afraid I don't have anything to blow you away. Just know that we are all here holding your hand through this.
It has been almost 2 years since I lost Helen and to tell you the truth, I have forgotten a lot of it but I will never forget the last weeks and days of her life. I don't think I have ever cried or prayed that much in my life. I knew she wasn't going to make it and frankly I didn't think I would survive it either.
You go ahead and unload on us as much as you need to. That's what this board is here for and that's why we who have finished our journey stay here. We are here for you as others were here for us.

No amount of reading prepares you for the raw emotions one feels during this journey's final days. I knew from reading and sharing on this forum that I wasn't the only one dealing with ALZ. I also knew that everyone grieves differently. Some hardly at all... some for months and months to come... but I knew that was okay. I was prepared to take it one day at a time, then one hour at a time, as needed.

Here it is, nearly 1-1/2 years since his passing, and I am able to do what needs to be done--All with the help and support from my friends here. This is the place I could rant and rave, fume and fuss, cry and laugh my way through the grieving process.

I have no magic answers for you, sames u, but by knowing that some of us have made it this far may help you be able to continue the journey with your Mom with some peace and less confusion.

Cyber {{{HUGS}}}.

Yeah, these past couple of days--thanks to you--I've been able to pick myself up and get some things done. All this has helped so much, and I've even done a little laughing at myself. Geez, how have y'all gotten through this post!? Thank you, Every One!

It's a good feeling know what we have is lasting. I didn't even THINK about the "relationships" with doctors and nurses we've built over the years, just stopping. No more doctors. Hospice made that sound like a good thing......but.....Mom's cardiologist is the one who actually diagnosed her with AD, started her on Aricept and didn't refer us to the neuro until a couple of years later. He's seen it all, for eight years. I'll miss him. We've been with the same Home Health off and on for six years and because of "business" had to switch to another.

How did you inform all the specialists about this? They've all seen her decline, and have always shown concern for me as well, I mean, even the dermatologist. Would a little note be appropriate?

*****
Mom is sleeping more but I'm determined to get her to walk every day, though it's not as much as the therapist wanted. Therapy was stopped until we switched but the new HH and Hospice said they will all come back in full force this week. BTW, having a stern tone and calling her by name just made her give me that motherly "look": Don't sass me, young lady!

I'm concerned with her choking at times. It's not with food, only drink, like it goes down the wrong pipe. Her cough is very weak. What can I do? I use a flex straw and try to get her to hold her head up but any instruction is difficult and she usually puts her head back down. I always get her in a chair or at the table to eat.

She's just started not wanting to open her mouth sometimes when I feed her. I'm trying different approaches but putting her hand on my face and opening my mouth seems to help her open hers. I switched to a toddler spoon which is better. She eats less now then doesn't want any more. I've started giving her three Ensures a day, after she eats. She sucks them down!

But, y'all, she smiles all the time and claps her hands! She seems satisfied, I dealy hope. She still talks in short sentences, sometimes gibberish, but mostly understandable. She doesn't resist whatever I do (for the most part)--poor thing, it took me 35 minutes to change her dirty diaper the other day. She even said, "you're not a nurse" and smiled. Bless her heart. God, I love this woman! (Jackie, I don't know if it's the Risperdal, but I hope and pray your Mom can calm down like this.)

Well, I'm keeping at it, thanks to you all!

Oh, I'm worried that this post has been at the top of the list for so long. Please know it's no less respectful to me to keep other topics coming. We all have to get through our days--where ever we are--together!

Love you!