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Joined: Tue Jan 05, 2010 5:27 pm
Posts: 146
Location: Fl.
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Hello I am new to this whole thing. My mom is 75 and she has LBDw/P. She wasn't diagnosed until June of last year. She has been ill for the last 4 years. She was in a nursing home and I have just taken her home with us. My Husband and myself.
So far so good. I am use to her hallucinations, it is the sleeping so much and the refusing to take her medicines, and one of her Heart meds causes her to unrinate so much. She does wear the pull ups all the time, and we are all the time in the bathroom. I spend more time in the bath room than anywhere else. I can see the transgression with her brain because her legs are not responding when she wants to walk, and sometimes she just forgets she has to move her legs. Her shakes are really bad but Praise God she can still feed herself with some clever tricks I learned from the nurses where she was. Her drinks I use a small cup with a straw attatched to it and I cover the top with clear plastic wrap so she won't spill it. Her tray I use a plate with high sides to it, and almost always give her a spoon, easier for her to bring her food to her mouth with out dropping it.
I Love my mom very much and want to make sure the last few years she has with us she enjoys all she can while she still can.
I keep looking on-line for the diffrent stage types of LBD and I can't find any. I have no idea what the sever stage contains. I know she is in the moderate to sever stage now. But what can I expect. What do I need to prepare for. If any one out there can clue me in I would greatly appreciate it.
We feel very blessed to be able to have my mom home.I know the Lord has and will keep on giving me the stregth to take care of her. Because I could never do this with out Him!
I just find myself giving 100% to her and nothing left over for my husband. I feel so guilty about that but at the same time I know she needs me 24/7. Is anyone else going thru this too?
Thanks for listening,
Tammy
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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Wed Jan 06, 2010 1:34 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Tammy,

Thank you for re-posting your message over here.

I do think caring for a parent can be very hard on one's marriage. Not all marriages survive this intense period of separation.

If you do a search of posts containing the word "stage," you can easily find this post of stages as written by caregivers:
http://community.lbda.org/forum/viewtopic.php?t=1357

Robin


Wed Jan 06, 2010 1:54 pm
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Location: Fl.
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Thank you Robin for you input. We Prayed long and hard on this, we know the Lord has open this up for us to travel through and He never paromised it would be easy. I guess the hardest thing I have to realize is that I have to ask for help sometimes, and alow others to come in and sit with her. Hopefully then we can get a dinner or just sometime away.
I do appreciate this site though. It is good to be able to just vent and get help at the same tiem from people that truly do understand!
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Wed Jan 06, 2010 3:45 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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on this forum look under the respite topic- there are several discussions about bathroom issues and other things you'll run into. I also have my Mother at home with me.
Sharon

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syt


Thu Jan 07, 2010 10:55 am
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syt
Thankyou so much. It is good to talk to someone that has been going thru the same thing.I am thankful I do have my husband here with me, other than that I really don't have anyone around here that has. I just sit and read some of the storeis and just cry, I so understand the pain of it. It is exausting, much also so rewarding. I love to see her smile. I want her to put a smile on her face as long as I can!

Ty,
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Fri Jan 08, 2010 12:18 am
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Joined: Fri Sep 14, 2007 2:49 pm
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It sounds like you care for your mom with so much compassion and patience. After 3 years of caring for my husband and a year of getting almost no sleep, I have lost all of my patience. I feel like a total "monster". You give me hope that, if I try hard enough, with God's help, I too can care for my LO with compassion. I want that so much because I know if I don't, when the time comes and I loose him, I won't be able to live with myself. You, on the other hand, should have no regrets!

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GinnyL


Fri Jan 08, 2010 10:23 am
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Location: MI
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vicki-
you're human!! all of us get impatient somedays esp when we're exhausted. You are very special- caring for someone for 3 years is incredible.
Take care of yourself
Sharon

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syt


Fri Jan 08, 2010 10:39 am
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Location: Fl.
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Vicki,
You are awsome, I have just started this with Mom, but you have been at this for 3 years. I have been good with my mom but when I get by myself I just want to cry. I can't even imagine what you are going thru. You are the Angel! My heart goes out to you. I couldn't imagine how hard it would be taking care of my husband.
syt is right, You are Human! I get exausted and when I do I get impatient. I just lean harder on the Lord! He has truly given me the strength when I get up in the middle of the night. when she- as soon as I sit down and breath she has to go to the bathroom. I Have one big problem though; I can't let others see how hard it is for me. I feel if they see they will doubt that I have made the right decision.
I would do it all over again. She is here until the Lord takes her home. No turning back. I bought a poster from a christian book store I put on my husbands door to his study, I think it goes with my decision I have made;
Disciple!
The Choice Has Been Made.
There is no turning back.
I have stepped over the line.
I won't let up,back up.
give up or shut up.
My focus is clear.
my path staight.
my God reliable!
I am a Disciple Of Christ!
I have made the decision, I am here for my mom, no turning back!
You have been there for your husband for 3 years now, Praise God!!! He has Blessed you with strength most people do not have! You are Blessed, at the times you don't feel it, just Praise Him Louder!! He will be there for you, He will carry you through! Lean on Him!
God Bless you Vicki! You have given me stregth!
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Fri Jan 08, 2010 12:05 pm
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Joined: Fri Sep 14, 2007 2:49 pm
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Post new at this
Tammy thank you for saying that. i needed to hear some words of encouragement today. after "loosing it" this morning after yet another night of not sleeping and saying things i shouldn't have, i sure don't feel like an angel. Quite the opposite.
i do know that God helps me through this. when i feel like i just can't take another day or night it seems as if he'll let me sleep 3 or 4 hrs and i get a renewed strength and feel like i can make it another day. i just take it one day at a time. we slept tuesday night and only got up 3 times. i can't remember the last time we did that. it was so wonderful but it was short lived. the past 2 nights have been horrible and i guess i just had all i could take this morning.
last night i picked up the Bible to read a little because i "needed just a word from God" and i opened it up and the 1st thing i read was in the book of Isiah 51:12 which said: I, even I, am He who comforts you. istn't that just like God?
he does send me the strength i need to do what i have to do. i just hope he forgives when i fail at this "test" he has given me.
thanks for you kind words and God will help you through this with your mother.
i often wonder how anybody could make it through this if they didn't know God and have Him to help them!

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GinnyL


Fri Jan 08, 2010 12:32 pm
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Joined: Tue Jan 05, 2010 5:27 pm
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Location: Fl.
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Sharon,
I have read some back writing and you have gone thru alot with your mom as well. Praise God!
I don't have anyone around here to ask anything so I guess this forum is all I have to ask, hope ya'll don't mnd.
She seems to sleep alot in the morning. Gets up and has breakfast, and she falls asleep right after. She stays awake better in the afternoon. She seems to eat ok, at times she will refuse and only want her ensure. (she loves those, she loves her sweets!)
She had a Doc pat yesterday, and was good, but she lost 7 pounds in a month! That is not good. She eates most her meals. I feel like I am doing something wrong. Are my meals not good, maybe another diet? I don't give her alot of sweets like she had in the Nursing home. Sometimes I just am scared I am not doing things right. Sometimes I am just scared to death I don't see things I need to watch for, I feel so blessed and so scared at the same time!
Mom has never really been a mom to me, we grew up on our own. Very abusive house hold, by our mom and dad. I have always wanted love from her and now for the first time she shows me Love. We never heard that word in our house or a hug by them. I never saw her for so many years, until she couldn't take care of her self anymore. Since she has been with LBD she has been so gentle and tells me all the time how much she loves me. I am getting my mom back. I guess that is the blessings I see. I have always loved her and for as long as she is around I want her to smile, and I can give her the Love I have always had inside to give her.I need her as much as she needs me. I am 48 and I love my mom, It never dies!

Our kids have never known her and they are finally getting to. They love her and are great with her.

Thanks for listening, any advise out there?
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Fri Jan 08, 2010 12:37 pm
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Joined: Tue Jan 05, 2010 5:27 pm
Posts: 146
Location: Fl.
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Vicki,
With out God, They don't have the peace in the middle of the storm. I know at times it does not feel like peace. Belive e I question myself so much.
Do you have anyone that could come and sit with him at night? I am gaing to have to let medicare start sending someone on Saturdays to alow my husband and myself to get away. To keep out marriage together.
I understand the losing it part. Believe me!! I just look at her like her state of mind know is just her! She has no control over it. Nothing she says or does is her, or her fault. So I tell the enemy" I am not impressed" I can get through this. Joyce Myer is really good with helping my remember to not give in to my emotions. Flesh is weak but the Spirit is Strong! Belive me I gave up drinking but man.... some nights I would love to have a drink just to chill out! But I know that would be the worst decision I could make. So I just lean Harder on the Lord!
Forgive your self! For He has already forgiven you! He understands, and one of my favorite verses is 1 Cor;10:13. No temptation has overtaken you except such as is common to man,but God is Faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make away of escape, that you are able to bear it!
That has gotten me thru plenty of hard times!

You are awesome! the Lord is carring you,
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Fri Jan 08, 2010 12:53 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Hi Tammy,

Feel free to post specific questions to other parts of the Forum, such as the Symptoms/Diagnosis area or the Treatment Options area. Not everyone visits the Introductions section.

In LBD (and most neurodegenerative disorders), there can be unexplained weight loss. Seven pounds in one month is a rather extreme amount of weight loss. I think there are two approaches: try a medication to stimulate the appetite, and/or give your mother lots of fattening stuff (ice cream, for example).

This sort of extreme weight loss would qualify your mother for hospice. I suggest you speak with the MD about getting a hospice referral. Your objective would be to have your mother graduate from (ie, get off of) hospice if she's able to start gaining weight (or stop losing it).

Robin


Fri Jan 08, 2010 1:50 pm
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Joined: Tue Jan 05, 2010 5:27 pm
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Location: Fl.
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Ty so much, I guess I thought I was doing her good giving her a healthy diet with low fats. Well I do not mind a bit getting her her favorite cakes and pies and such sweets. :) It is like today she is sleeping more than eating. I will try that first, then if she keeps losing I will let the ask the doc. She has been going every month for check ups.
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Fri Jan 08, 2010 3:15 pm
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Joined: Tue Jan 05, 2010 5:27 pm
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robin I try to get on the chat line and it comes up as an error. And it looks to be in hebrew or aribic? Am I doing something wrong?

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Fri Jan 08, 2010 3:45 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Tammy,

Hospice = free care for your mother. Why not avail yourself of that opportunity?

No one here on the LBDA Forum has any responsibility for the LBDA Chat. I suggest you contact the LBDA national office (they close in a few minutes -- 404.935.6444 phone; info@lbda.org) about this and maybe someone can walk you through it. Also, do a search on this Forum of past posts about LBDA Chat. It would be best if you all coordinate a time so that there will be others chatting when you are.

Robin


Fri Jan 08, 2010 5:59 pm
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