desperate - Alzheimer's Disease & Dementia Message Board

Jess22 · 03-10-2006, 07:15 PM

Hi Everyone and God's Blessings to all of you. It has been awhile since I wrote, it has been a very terrible time for the last week but every chance I have had I have read all of your threads and gained so much strength... I had to have an ambulance take my mom to the hospital on wed. she was completely out of control in the fact that I could not contain her and she kept trying to leave. It was a terrible expeirance for her as well as me. After arriving at the hospital ( I had changed her doctor to a differant doctor ) he had her placed in a geriatric
behavior unit in a better hospital. He wanted to see if they could regulate her med's and get her on the proper med's before going any farther with any decisions. I'am thinking of placing her in a nh because of her behavior and that she cant seem to adjust to caregivers in her home or here or anywhere. Today the psychiatrist says she is in stage 4 alzs, and that this is the absolute worst stage for the family and her because she has still many lucid moments. He says she is very very independant (DUH) and that is where the struggle is.... They feel they can line out her meds already changed some and she is beginning to calm down some. They had to give her injections several times at first because she was hitting staff and beating on the doors... I have not been able to visit her as of yet because they felt it would be very hard for her but they have assured me she has recieved many hugs and it seems to be a good place and well respected. On the other hand I feel absolutely sick all I have done is cry and feel like dying. Im beginning to feel that IM physchotic myself and need to be placed somewhere . My dh is I know so tired of this journey bound to be because he has not had a wife of any caliber for more than 1year now. I have the one sister who has not helped and so we have done most of all her care only had caregivers for a month and that has been awful, constant crying, constant calling me at work, kicking people out and eratic behavior. Today I went to the best nh in our area supposedly and they say they will be glad to have mom but they cant keep her if she becomes to wandering or combative they do not have a locked unit strictly for alz. so it could mean sending her back to another facility... HELP!!!!!!!!!!!! IM considering bringing her home with me agian and hiring around the clock care here until she reaches the fifth stage where she may no longer know where she is..... IM so confused and feel so desperate it's my little 4ft. 10in. bundle of pure joy that I love and have lost and I cant bear it....... My mommie is my best friend and Im sooooo missing her today. Tonight I was able to talk to her on the phone I can tell she is drugged and yet she said I love you jesse and I want to come home where is my baby??? (her Dog) it just breaks my heart Im poa and have to make the decision someone please help dh says we can bring her here and do whatever make me feel best but IM not sure anymore what is best................. any replies helpful.....................

janeslk · 03-10-2006, 07:44 PM

Wow, what a horrible ordeal for you. Your mother's problems remind me of a woman who is in the AD lockdown unit with my FIL. She was screaming and fighting when she was taken to a regular nursing home by her daughter. She fought and she was strong. She was then taken to the lockdown unit and has become totally different. She smiles and seems happy with everyone and everything there. I suppose the drugs have something or maybe a lot to do with it, but she does seem remarkable content and is very active physically.

I don't think there is a point in AD care when you can go back and it sounds as if you have tried the caregivers route. Another friend has a mother who has dementia and she threatened her as well as threatened to take her own life. They found the proper mix of drugs and she was able to be in an assisted care facility.

I do hope you find the answer that is right for you.

Jane

BarbaraH · 03-10-2006, 07:59 PM

(((((((((((((((Jess)))))))))))))))),

Bless your heart! I know just what you're enduring and I'll say again, you've done the right thing in placing your mother where she can get meds to help her rest and relax, to be calm and to enjoy her life to some extent. You've done the right thing.

When I was enduring what you are, I was in VA and my DH and sons were in TX. I'd arranged a month away from my job to be with Mom in January - thinking she was 85 and I could help her during the winter weather. I had no clue that when she was at my home for Christmas that things would be so bizarre and that 3 days into my visit to her home, I'd be fighting her at 11pm so she couldn't get the car keys and go out the door with 8" of snow on the ground. She didn't know me. She didn't understand that a black sky meant night (how do you forget THAT???) and she didn't believe me when I told her it was 11pm and showed her a clock. I finally got the keys and got her into bed, but she was so angry that she slept in her clothes. It was awful. I have never cried so much. The next morning, I called cousins and Mom's sister and said I was moving her to an assisted living facility before I went back to TX. All were upset, but they could tell how upset I was and didn't argue. 2 weeks later, my cousins and I moved Mom into the chosen ALF. She cried. I cried. I worked off my guilt stenciling around her LR, DR, bedroom and kitchen backsplash. I hadn't heard of NO guilt then. I also slept on her couch for her 1st two nights there. My DH was so concerned about me that he flew his mother to TX to care for the kids and he flew to VA to be with me.

7 months later, I, too, was asked to stay away for a week as Mom adjusted to a locked unit after she wandered away from the ALF where she'd lived for just 7 months. In that time, she'd benefitted greatly from an anti-depressant pill daily and a sleeping pill each bedtime. Staying away wasn't easy and I did call daily to check on Mom. When I visited again, Mom was glad to see me although she'd forgotten me as her daughter months before. She was calm, happy, and in no way aggitated. She enjoyed the simple activities that took place each afternoon.

Jess, you simply cannot care for your mother as she needs care 24/7 now. You cannot have the needed medicines at hand in your home. Your mother will not cooperate with you as she will with medical staff because that's just the way it is - whether she still remembers you or not. Sad, but true.

My sweet little mother would have been horrified and heartbroken if she'd known how she was behaving. My beloved mother was already gone and nothing I could do, say, pray, wish, or hope could bring her back. Someone who was worried her own mother wouldn't know where she was had taken her place.

Jess, there's only one thing worse than losing a parent to Alzheimers and that is to lose yourself, too. Your mother would not want you to ruin your health, to endanger your marriage, to frighten and worry your children, and to disrupt every aspect of your life and home in order to care for her. You know that, even if she didn't have a chance to tell you.

Forgive yourself that you aren't Superwoman and cannot cure Alzheimers. Welcome to the club. I couldn't do it. Martha couldn't, Sally couldn't and the list goes on. All you can do is what you already did. You did well. It's the turn of the experts now.

When your mother has settled down, go visit her. Take lotion to rub on her hands and talk to her about the events in the family and about town. She'll enjoy that. Keep your visit brief and upbeat. Have kleenex in your pocket and in the car for the tears that may go home with you.

Your mother is where she can get the best care from a staff that goes home after 8 hours and a rested staff comes to work. Please let her stay there. As one only child and responsible daughter to another, I give you permission. It's okay. It's not what you'd choose, but it's the best of all of the choices. Live your life, too.

Sorry that this is a book, but I hope you've heard me. I care about you.

Blessings - Barbara

Sandyspen · 03-10-2006, 08:56 PM

Jess,

I'm so sorry for what you've been through the last few days. It is so traumatic and devastating. I know exactly how you feel. I'm only starting the 3rd week since placing my mom in a family care home. Just 3 weeks ago, I was here, feeling just like you, thinking my heart would never heal and I would never stop hurting or crying.

Everything Barbara says is true. Without her and the other ladies here, I don't know what I'd have done. No one understood how I felt like they did.

It does get better, though. The medication will help and your mom will calm down. Yesterday, for the first time, I had a pleasant visit with my mom. She did not ask to go home and smiled happily when I left as she went off to be with her friends. It was such a relief. Like a weight lifted from me.

You don't realize how much stress you've been under until you allow the doctors to take responsibility for her care. They know how to take care of her, they're trained for that. You've done the very best you can for as long as you can. Now, you need to take care of yourself.

I cried for 2 days when I left my mom. I know it's heartbreaking. But after that, I started to feel better, little at a time. I started to think of things I could do for her there. When I could visit. How I could fix her room. What gifts to take. There will be lots of things you can do for your mom, and lots of times to see her. The situation will be different, but much healthier for both of you.

It's a much better way for both of you. I worried myself sick when mom was here, all the chaos......I was so afraid she'd have a stroke from all the raging. You'll see, Jess. When her meds are adjusted and you get some rest, you'll know that you've done what is best for both your mom and your family and YOU.

Take care of youself. Rest as much as you can. Come here as often as you need to. We care about you!

Martha H · 03-11-2006, 06:16 AM

Dear Jess,

Now that you have taken the first stop, stick to this path. Taking her back to your house, even with around the clock care, will so disrupt and confuse your family life that it will do nobody any good in the end.

Take my Mom as an example. At home with me she was unhappy and felt restricted by the aides who came in during part of my work day. She hated them and hated me for insiting we had them. The agency changed her aide once, with no explanation, and then she was absent several days and we got complete strangers who didn't even know the neighborhood - and one of their tasks was to take my mom by public bus to her senior center. Mom being in Alzheimer stage 4, did not remeber the way. One of the substiute aides walked with her in the wrong direction for ???? how long, and then returned to the house to call the agency when neither of them could find the bus stop.

On that day I was able to leave work extra early and came home at 11:30 AM (usually it was 2:30) and found a totally distraught mother and an angry aide YELLING at Mom.

Home Health Aides are often an additional problem not a solution.

Now Mom is in a NH and has a pretty good life.

She is now stage 5 to 6 and less able to worry, protest or think.

If you can find a NH with an Alzheimer unit, then your Mom will not have to be moved again, but even a temporary placement is better than none at all. I strongly advise NOT to take her home again.

Love and prayers,

Martha