Starting over...Again.

Tena_Gemini · Post by **Tena_Gemini** » Sat Mar 21, 2009 4:20 am

Hello Everybody,
I don't know how to start. Some of you were following my posts back in Dec and early January and knew my kids were trying me, and my Mother was getting sicker. It seems like since January, my life is not mine any more, and life has changed so completely that I don't even know where to start. My daughter is going to nursing school, and she is scared I am going to die when Momma does. She says I have to get a life outside home. She doesn't understand it is not that easy. my brother is stil Autistic, and I still can not work another person's schedule. When he needs me to get off work and go to thte school, and he does need me to come there often - but if I had a job, it would not take them long to fire me and if I was the boss, I would fire me too. I have to be here for him now, and since he is Autistic it is a little different than being there for a normal child. He is really too dependant on me, but that is not his fault, it is just how things truned out for him and me.
Now I feel like I am making excuses again, and that is one thing that has gotten me into trouble.
My Mother has Alzheimer's, has been under my care since 2003, along with my little brother, and she advanced to another stage at the end of January.It was more than I can take this time. I have to start the program over. I lost all the progress I made, although I catch myself thinking about "How" I am thinking about things, like the program teaches. I have had a lot of very unhealthy ways of thinking. I need to change everything about me. My fiance' will leave soon if I don't find myself. If I was him I would leave. I love him, but I can't tell him any more - AND I don't know why and don't understand it. I WANT to tell him I can't do this without him, to stay, to hold me, and to show me how to do this. Instead, when my mouth opens, I tell him to get away, that he doesn't know. Then I try to tell him so he can know, but I don't know. When I can't tell him, I get just messed up. I mean my head spins, my words are lost, I really can not think. I start saying stuff that doesn't even make sense to me, and then I argue about it with him??? I know this doesn't make any sense does it?
It is likie my daughter said though, I am not sure if I am ready or not. I lay awake at night and ask God to take momma Home and make her better - And I mean it. Is that wrong of me? I am not WISHING her dead, I am WISHING her WELL. With such a non-compliant disease, it is eating her alive in the most litteral way, and it hurts us sooooo badly, but it has got to hurt her when she can't remember and she does not believe what we tell her. That has to hurt her more than the disease hurts us, doesn't it?
The nurse at the nursing home that we tried was such a smart aleck. When they want to put her into a Mental Institution because they can't cre for her, instead of looing for the reason they can't handle her, they just decided she is non-compliant and so will have to go into a Mental institution. I asked the nurse what is that supposed to mean? I meant I know what non-compliant means, but how do you call a person with a totally non-compliant disease non-compliant?> She broke her wrist last friday at the Hospital Geriatric unit, a specialty place the nursing home sent her for Medication Modification. It was definitely NOT the nurses fault. She is on so much medication, and pain meds for fractured spinal bones and ribs is part of it. All the pain meds, and she wants to walk around and insists that she can - AND DOES. They can't stop her, I know that because I can't stop her! OK, so she fell an broke her wrist. They put off sending her to an ortho doc, and transfer her back, then decide they can't take care of her, and put it off while they transfer her around but we put a stop to it and moved her into my older brother's home. That was Tuesday. She got to see the specialist yesterday and they casted her wrist one week After it had been broken.
Well, anyway, Tuesday the nurse asked me how we thought we would be able to take care of her? Told me the Doctor is going to not treat her about her wrist because she is non-compliant. I told her that while momma is not compliant with the treatment, that we are compliant, and will keep her on track. So then the nurse let's me know that if they can't make her wear the wrist brace that we surely can't. And i told her that i know we can't make her wear it, that they couldn't and the doc couldn't either. So then she asked what did I think we would do. So I told her we would have a cast put on it. She seemed really offended that I thought that sinsible about things. She said "Well, then that is a choice that you all will have to make." I just really did not get that. I kept telling her over and over that it was no offense to thier nursing home, but if Momma could not stay there, we would not institutionalize her, but adjust our lives to take care of her. Momma just needed a smaller setting. Even the psycologist thought she needed a smaller setting, but told me nursing homes are not made for people that need as much as she does. So why did that nurse have to treat me like I was signing her death warrant by taking her home? Well, as close to home as she can be.
Well. I am going nuts, and my ost doesn't make any since. I am going to leave it though, and maybe tomorrow I will understand better how I feel after I re-read this. Maybe.
Tina

Jenivere2006 · Post by **Jenivere2006** » Sat Mar 21, 2009 8:53 am

Tina, Bless you!!!
You have a lot on your shoulders. Hang in there Tina. I am praying for you!!! It is a lot and maybe too much for you right now but not too much for God.
Put your mom into God's hands as of now.
Does that sound too simple?

Well, I don't know an answer right now. But I'm gonna be praying for you.
And for your autistic brother.
Bless you!!!

Let your friend there read that post that you wrote. And then he will know that you need him.
You did a good job with that.
Cry all you need to right now; but hope comes in the morning!!!
The Lord be with you!!!
MaryJane

Guest · Post by **Guest** » Sat Mar 21, 2009 7:35 pm

Hi Tina,
I completely understand your feelings about your mother and the nursing facilities...My dad was diagnosed with Alzheimer's a few years back...He is now in a nursing facility almost 3 hours away...I don't really buy into the Alzheimer's diagnosis, because he still remembers all his family members, and calls us by name...He was schizophrenic for years, and I think the meds and mini-strokes caused him to have the relapses in memory...He can carry on a very intelligent conversation, but, we can no longer keep him at home, due to the fact, that he needs around the clock care...He gets silly thoughts in his head, and it came to the point where we tried everything within our power to keep him, but, every time we tried, things only got worse...The psychiatrist had already warned us that he would never be the same anymore, and we didn't want to accept the diagnosis...I will not go into depth detail, due to the sensitivity nature of this sight...I don't want anyone else to develop any new fears...

Anyhow, we have struggled with this for years, now...And, yes I have prayed a couple of times, that the Good Lord would come and get him...He was born and raised in this county, and he gets so lonely, and has so many problems...I just feel sooooo sorry for him, but, I know that I cannot heal him...All that I can do is pray for him...Every time I go and visit him...I just want to wrap my arms around him...hold him close to me and just bring him home...It is sooo hard leaving him there...I love him with my whole heart...Lately, I have been praying in a different manner...I ask God to let him live as long as he wants to live...I just want him to live as long as he chooses too...My dad is a fighter, and I am sure that he tries to find some way to deal with all the horrible things that are going on in his life (mentally and health-wise)...I treasure every moment spent with him, and when I visit and leave...It is just soooo hard to leave him behind...

Anyhow, I have found something that works very well for me...I know that God is in control, and that he loves my dad with every ounce of His Being, so, I send loving thoughts to my Dad, and ask the Lord to let him know that he is safe, and that we (the family) love him with all our hearts...Love is a powerful gift, and I truly believe it travels far....I also ask the Good Lord to comfort him, and let him feel His Great Peace in His soul...And, I truly believe that Jesus does this for my sake, as well as, for the sake of Dad...

I honestly don't believe we are being selfish, if we see someone we love dearly, suffering, helpless, sick, and in despair, if we pray that the Good Lord see fit to take them on home...I just have changed my mind on this one, since, I am not ready to give my dad up, right now, and I believe he really does want to live as long as he can upon this earth...

If I knew that my dad no longer wanted to live on earth, and he asked me to pray that prayer again..I would have to think about it...It takes a really courageous person to pray that a loved one be taken home to Heaven....I just love him so much, and it is soooo hard to let go...

I did pray that prayer for my aunt who was dying of terminal lung cancer...She was suffering, and the doctors had given up on her...She begged me to ask the Good Lord to take her on home...I loved her with all my heart, but, I knew that she didn't want to linger and suffer any longer...So, I did pray that the Lord would come and get her, and He did the very same night...She had been through so much agony, and I had prayed for her healing many times, prior to that, but, I knew in my heart, that she would not recover...I felt a great peace at her funeral...I knew that her suffering on earth was over, and that she had finally gone to her eternal home..

Just wanted to share this with you...Hope this comforts you in some way...God Bless

Guest · Post by **Guest** » Sat Mar 21, 2009 7:54 pm

Tina...I also want you to know that we have dealt with the nursing facilities so many times, and they can say and do things that are soooo insensitive....It really is a sad scenario, but, we just have to trust in God to take care of our loved ones...It is also very stressful...During stressful times, our anxiety level rises, but, I really think that is normal...You will find a way to deal, as I did, and things will eventually work themselves out...They always do...Once, you accept the situation for what it is, and realize that you have done the very best that you know to do, and give yourself that long deserved break, then, your anxiety level will decrease...You will find the answers you are looking for...
God Bless...

jcat · Post by **jcat** » Mon Mar 23, 2009 8:40 am

Tena,
I can understand what you are going through. I have 2 sisters and our Mom died in 1998. Dad was always forgetful but he is so much worse now. he is almost 89 and he knows us but he forgets everything and doesn't remember things in the house etc. My sister and the 2 brother-in-laws help with him. We are lucky that he can stay alone but I don't know how long that will be. We live very close to him so he can be watched. It is so sad how they change and I do understand about your prayers. I sometimes wish God would take him home to see Mom. He has never gotten over her death and I know he had rather leave this world but he has a good attitude.
I am a nurse and I do know what you are talking about. Some can be so hateful and not think of what the families are going through. I can honestly say that I have always been good to my patients and their families. I am a school nurse now and they all love me. Really, you should report the ones that aren't nice (do so without them knowing it) and see if it makes a difference. I worked on a floor as a prn nurse and it was much like a nursing home and we had a lot of bad nursing assistants. They didn't treat the patients like they should have and didn't clean them well or anything. It upset me so here I go with the aide and assist so the patient would get good care. I know most places are not staffed well but I never could be mean to anyone. I loved the older patients and I would sit with them many times if they were scared about anything and a lot were afraid to die alone. I would hold their hands, rub their backs and showed as much love as I could. They appreciated it so much. I do not understand why the nurses and aides can't see how they are and do what is right in God's eyes. I always loved the song by Amy Grant and the name is "My Father's Eyes" and I want people to see my Heavenly Father's eyes through me.
I will pray for you becaue it is an awful lot to be going through. Write if you want.
In God's Love, jcat

Guest · Post by **Guest** » Tue Mar 24, 2009 3:01 pm

Jcat...What a lovely thing to do for the elderly...One day if we live long enough, we may be in some nursing facility, somewhere...I am sure you will be recompensated for the kindness you have shown to these patients...If not on this earth, then in Heaven...May God Bless You as You Have Blessed Others....

Tena_Gemini · Post by **Tena_Gemini** » Tue Mar 31, 2009 2:56 am

Thank you all so much. Your prayers and thoughts are so kind. I was the one who sat with my dad while he died of lung Cancer. I prayed with him since he had never been to Church, and he accepted the lord and he died three days after that. He sent me home the night he died, exactly 10 minutes before he went into repiratory arrest. I had been there for 11 days. That night he wanted my Mom and Brother to stay. It was so Tramatic on Momma to watch him go that she had a real steep Decline in her condition when he died, and then with each death in the family after that, she got noticably worse. Now, she seems to be better in the last two weeks since we moved her into my Brother's. Him and his new Wife are dedicating all thier time to take care of her. There are some very disturbing things. Alzheimer's is ravaging and she is not herself any more. She remembers for a couple of minutes at times, but then she forgets us again, and goes back into her world. Thank God her world seems peacefull at his house. Her violent erruptions are fewer and further between, and we have noticed that they usually happen when a stranger is around. She kicked the Social Worker out of the house the other day. That is kind of funny. See, she has forgotten her words, but you can tell when you talk to her that she knows what she is saying, and is TRYING to hold a conversation. It makes her happy when we understand what she is saying even if she says something off the wall like "That dogs loves to Smabarkus." That is one of her new words, but it simply means Bark in her mind. The Social Worker treated her like a non-person, and spoke of twhat was to come with the Alzheimer's, (which Momma has never acepted...) so finally Momma yelled "Hey!" "Hey You, I'm not over there on top of that picture thing!" then she proceeded to stand, face the Social Worker, and in not very many nice words told her to leave and never come back. She did not miss a beat, got all her words right, and my Brother said that was a completely lucid moment for her. BUT she used language that my would have made my Mother blush for a month! Since they weaned her off some of the "Zombie" Meds the Home had her on, she is easier to handle, but still not easy to handle and it is going to get harder. My Brother who never accepted her diagnosis is even humbled now, and said she is loosing the last of her mind. She can't use eating utinsils anymore. The thing is, except for the fact that she is retaining fluid and has to have an occational catherer, she is extremely physically healthy except for soft bones, and they said she could have years to live and will probably go of pneumonia or something. She is fighting for her dignity. I think she is turning violent because of that loss of her dignity. For the last three months i have blamed myself for her deep sudden worsened condition. I thought puttin her in the home drove her over an edge. i hope the lord calls her home before she is so violent that the State commits her. Hospice is helping now with in-home services, but she cries, and that makes me want ot cry all the time. She wants her baby back, and thinks her baby, my Austic Brother died. We took him to see her yesterday, and she thought most of the time that he was her Great-Grandson. She doesn't have any Greats yet. I have him, and that makes me feel guilty that I have her son, and she started thinking he was dead when she had to go to the hospital because it is easier for her to think that than to know I took him. But her disease was hurting him. She would go off on him for no reason, and it was really affecting him badly. Since she had to go in January, he has made a 180 degree turn for the better in his behavior and his grades - just over all improvement. The school counselor is counseling him about living life now, and not feeling guilty about Momma. That is one good counselor.
Well, thanks again everybody. I am having a better day today, and it feels good to get it out. I have become so Agoraphobic in the last few years of being my Mom's sole caretaker that I have no friends, and I cringe at the prospect of meeting new people. it makes me not be able to think, it makes me studder, loose my words, and then sometimes I even throw-up. I got so sick when I had to go to my Brother's IEP meeting week before last that I threw up, and felt like I was going to pass out until I got home and inside. I have to make that stop, and had made improvement until she had to go in January. Something in me snapped then. My Daughter is a training nurse working on a BA in Nursing at Baylor. She works in an Alzheimer's Assisted living Facility in Temple Texas. She was afraid this would happen, but i told her I could handle it. But it seems my brain thinks different.
I have to close for the day, we are moving if we can find a house, but may have to pay another month of this 5 bedroom house rent. That is also stressfull. We have to move now that we don't have her help on the rent we need a smaller house, and of course lower rent - and the houseing market seems completely shhut down here. Even for rental houses.
Tina