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mariam

Member
Joined
Nov 5, 2013
Messages
29
Reason
Loved one DX
Diagnosis
10/2013
Country
US
State
ca
City
Orange
Hi All! I have not been on too much in the last few months. My dad was diagnosed end of October 2013 and seems to be hanging in there. He has Bulbar so his speech has gotten harder to understand and I can tell he tries hard to say his words. His left hand looks like it a claw, but he seems strong.
A few problems.... My mom doesn't want to talk about it in front of him and everyone thinks he doesn't quite understand the severity of his disease. My mom just says that he is having problems with his nerves and just getting weaker is all. His mind has been affected so he tends to act very childlike at times, yet other times he seems like his normal self. It bothers me because I want him to be aware of his condition but my mom thinks it will depress him if he knows...my husband thinks he knows and is pretending nothing is wrong. My dad says he feels great and always wants to leave the doctors' office abruptly because nothing is wrong with him. It makes me sad. He gets OCCASIONAL pain in his jaw area, his hands and on Saturday in his neck (that lasted around 2 minutes or so). One of you awesome helpers told me to put a sock in the micro with rice and that has done the trick so many times. He also gets super tired walking now, even around the corner.
My mom is at her wits end with him and I tell her to just be patient, his personality and he in general are just not the same anymore and she is frustrated with him and she is tired of being cooped up in the house all day because he does not want to go anywhere.
We are almost done with our construction in our house, where we are adding on a downstairs bedroom with handicap restroom for him. We explain to him and show him and tell his this is going to be so awesome having them move in with us and he agrees and seems excited....until he leaves here and drives my mom crazy that he is NOT selling his house and moving. She is so excited to be part of our family and have a social life again (she is too afraid to leave him alone because of his mental capacity). So sorry to vent on here but I am so sad and frustrated myself. I feel that my mom's health is deteriorating because of the stress that is on her being alone with him in their house without friends or family around. I wish he was not so stubborn. It seems like his brain that is failing has brought out the worst in his personality with my mom.
I have read and read and I know that everyone is different with this disease but it really bums me out that my dad has the ALS and I think the frontal lobal (sp?) has also been affected. I am also worried on time and how long we have with him. Again...sorry I am venting an all over the place here with my writing. I guess I just want to share my feelings right now and hopefully some of you know where I am coming from. I adore my dad and I wish this disease would not have struck him...I'm just blue on a Monday (I guess I am throwing my own pity party today) :)
Hope you are all well and again..sorry to vent!
 
You vent all you want. That's what we are here for. One of the emotions is denial, that was not the case with us. Anger, heartbreak, being overwhelmed and for me acceptance. I so understand what your mom is going thru. I also feel isolated and alone. My pals is bedridden, on a ventilator and unable to speak. I can't even talk on the phone. Every time I am on the phone he is ringing the bell. This forum has been a blessing for me. All of my CALS out here are my new friends and we all share a bond. I encourage your mother and Yourself to join us on the "Pity Party"'thread. It is a wonderful place to vent, cry and even laugh.

My Pals does not have the FTD issues but there are plenty of CALS who experience that every day. You can reach out to them and they can relate and guide you. My hubby will agree to something one day and change his mind the next. Your parents are very lucky to have such a caring and loving daughter.



Debbie
 
Mariam; I am sorry that you and your family are going through this horrible experience. God bless you and your husband for stepping up and doing what you are to make both your parents life easier. Dementia is difficult enough to deal with in an able bodied person but worse when you add the progressive disabilities associated with ALS. You and your mother are going to have to develop very thick skin, and it is going to be like working with a very large 2 year old. Welcome to this forum where you can vent all you want. You will be in my prayers.

Paulette
 
Hi, Miriam --

>He has Bulbar so his speech has gotten harder to understand

me too, but Sandy, my wife, lies and says it is ok :) -- I don't think she really listens to me anyway ...


>His left hand looks like it a claw, but he seems strong

That is just like me, but the right still works (mostly). If he can type, I have ordered a one-handed keyboard so I will let you know how it works

>A few problems.... My mom doesn't want to talk about it in front of him and everyone thinks he doesn't quite understand the severity of his disease ... It bothers me because I want him to be aware of his condition but my mom thinks it will depress him if he knows...my husband thinks he knows and is pretending nothing is wrong ... He also gets super tired walking now, even around the corner.

If you have clergy that you know (or even if you don't), they will often offer a different perspective for all of you -- your Dad, Mom, and *you* -- we all suffer and rediscover life as we go through this experience.

>she is tired of being cooped up in the house all day because he does not want to go anywhere.

This one worries me too, for my Sandy. Try sitting with your Mom and work out a plan -- CALS get a tougher hand dealt than we PALS do! Get her to get out, have a lunch, get to a movie or have a video night, etc.


>We are almost done with our construction in our house, where we are adding on a downstairs bedroom with handicap restroom for him. We explain to him and show him and tell his this is going to be so awesome having them move in with us and he agrees and seems excited

It's fantastic you can do this for him. Check out the bidet toilet seats, I found about them on a thread here and they sound like a dignity-saving addition.


>She is so excited to be part of our family and have a social life again (she is too afraid to leave him alone because of his mental capacity).

:) It is a wonderful gift you are giving her!


>So sorry to vent on here but I am so sad and frustrated myself

You should find a friend that you trust to talk about the sadness. It can grow and fester. You don't want that.

I think frustration is a pisser and if you find an easy way to I'll be watching :) ...


>I wish he was not so stubborn ... I know that everyone is different with this disease I am also worried on time and how long we have with him.

As we say, "It is what it is" and all the worrying we do isn't going to change anything (personal experience, as I worry about everything). IMO FWIW :).

>sorry I am venting an all over the place ... I guess I just want to share my feelings right now and hopefully some of you know where I am coming from

Get a copy of The American Tail -- "Never say never" :)

Venting is good. Our poor Realtor called us last night about a house and I was a bit hard on him w/o good reason (I was having trouble talking, like that was his fault :-(). I hate having to apologize, especially when I really am wrong.

I really do try there is something character-building in this experience, but ...


Best regards from Houston!

Max
 
"It is what it is" is your best friend. Remember that because he has cognitive involvement, not only is his personality different, but he also may well have lost (or be losing) "executive function" or what we think of as cause and effect. So those times when it feels like he's really just trying to upset you or your mom, he really isn't because his brain no longer links his activities to how they effect others. I would strongly suggest trying to get your mom to get some sort of respite on a regular basis to ease the burnout.
 
Thank you for the kind words Santa Jo. I will definitely look up that group and I'm trying to get my mom to come on here. She is having a really difficult time right now with him and today was a really bad day with his behavior. Thanks again and we will be in touch! :)
 
Thank you Paulette! He is a big two year old! Appreciate your kind words. :)
 
Wow Max! Thank you for responding to my issues! You seem like a wonderful man who is enjoying life and not letting things get you down. I truly loved reading your post back to me. The computer key board sounds fantastic, please let me know how you like it! The problem with my dad will be that he says he "doesn't need it" lol! I worry about him and worry about my mom, however I do agree it is what it is. I'm so glad that my husband and I are able to help them out and have them come live here with us and we can all help each other out. My mom left him today because they got in yet ANOTHER argument over something silly and came to my house to go with my husband to find something for her new bathroom...she said when she got home, my dad was in the garage telling her that he couldn't be without her and had such anxiety that he thought he would have to call 911! Its a daily struggle, however we will all get through it. Thanks again Max and stay in touch! Hope you are doing well and "see you soon"! :)
 
Thank you Katie, I keep telling my mom that and to please have patience with him. It breaks my heart that his mind is not the same it was...he was such a strong, respectful, wise man that we all looked up to, I want him to feel like that always. I treat him with so much love and I go out of my way for him, it makes me feel good that i can be there for him. Thank you! :)
 
:) ... We'll all hang in there together. Tell your Mom she is not alone. Have her read the pity party thread and she will she is not alone and others have it a lot worse.
 
For now until they are living with you, perhaps you could have a couple of afternoons each week where you can come over and visit with your dad and let your mom get out of the house. she needs that! he will complain, but he will survive.

you will be able to keep his stress level down and keep him safe, and ease her mind while she gets some R&R
 
Thanks Barbie! We do stuff like that to try and help. We try and bring him here as much as possible so that he starts getting more and more comfy. He loves staying here with my teen kids when I take my mom somewhere. I keep telling my mom that my dad is scared and frustrated that he can't remember things and has problems with his speech and eating and drinking at times. My mom once looked up to the sky and said "Lord please give me patience" and my husband said, what she needs to ask God is "Lord please give me compassion and understanding" and I always think of that. Its so true so that is how I treat my dad. He is deserving of it. My mom is scared also and doesn't know how to handle it. Them being cooped up in their house (they live around 30 min away) is making it worse for all. Again...I can't wait to have them here so I can help out and enjoy my parents.
:)
 
Vent away! I know how you are feeling and the frustration it can lead to. My Mother's speech is getting horrible, I just moved home from Korea to take care of my Mother. It's really upsetting that we struggle just to figure out what it is she wants. I don't get all that frustrated, but I know she does. The more upset she is, the more difficult it is to understand her. My Step Dad, who has been taking care of her since day one, gets very frustrated and doesn't like talking about certain things in front of her, like your mother. I'm very sorry you are going through this, and you're right it's not fair. But, if it wasn't your Dad or my Mom, it would just be someone elses. Either way, it's not fair for anyone to go through this. I'm not overly educated on the disease yet and life hacks that make things easier. But, I can say that you offering to help take care of your father is amazing, and will be better on everyone. I know in the short time I've been here, my mother and my step dad feel so much better about everything.
Just enjoy your time with your father. Hug him, kiss him and tell him you love him as much as you possibly can.
 
Thank you Chrissy! Appreciate the nice words! It is tough, I'm sorry to hear about your mom. It just makes me so sad to think of what they are going through and it scares me of what is to come. I am truly blessed to have the opportunity of taking care of my dad and also giving my mom more of a normal life and enjoying being around people. You too are wonderful for helping take care of your mom! I notice you are from my neck of the woods here in Cali. Take care of yourself and your mom and we will chat again soon im sure! :)
Stay away from the earthquakes! lol! That was quite a jolt last night!
 
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