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Sophia77088

Member
Joined
Aug 9, 2010
Messages
15
Reason
CALS
Diagnosis
06/2006
Country
US
State
Tx
City
Houston
I'm new to this,but I need some suggestions, prayer, help or something..I'm really on the brink of a melt down. Long story made short, Im an only child married mother to 7 kids, taking care of my mom who has ALS for the last 5yrs. Had private duty nursing, but I had so many bad experiences, one which almost cost my mom her life. I reside in Houston, TX so Im learning there are NO VENTCARE NURSING HOMES anywhere in this city. ( Which is beyond CRAZY to me!)

I tried a different company for nurses,but she has come so far in loosing her speech no one can understand what she is saying, And my mom is very particular in her needs that no one has the patience to say out here and work with her. So that leaves me taking care of her around the clock. My 2 oldest kids along with my husband and step dad(every now and then for him) are my only help. But they can't begin to do half of whats involved in her care, because she never allow anybody to help when she could talk and move about more. The majority of her family(my family) is half way on the other side of the planet. They do come when they can,but again its more emotional support than anything.

I hate to make this about me, because I know her struggles that she deals with. But I don't have time for anything! my husband, my kids, myself and what make it worse is she doesn't appreciate all I am doing for her to remain at home still. Its like I'll never do right by her in her eyes. Its sad that my mom is practically on her death bed, and all she wants to do is argue with me about nothing.

Oh God I am so lost, I pray and pray and I will continue, and try not to loose faith..But I'm SO TIRED!I just don't no how I can keep going..

Sophia...:confused::(
 
Sophia,
Take a deep breathe and count to 100. We have all been there. Have you guys looked into getting a dynavox/Eyemax system? We had one for my PALS and he loved it. It took a little gettingused to(for all of us). But he could talk again! He could make his needs and wants clear.

This disease draws all into it's circle. We all go through it. W emay not have it but we care for and about them. Maybe it is time you set some time(when you nd her are alone) to sit down and have a heart-to-heart. Let her know that you are working very hard to help her and to make her as comfortable as possible and still keep her w/ family. Be gentle but honest. let her know that you need to feel apperciated. And that this disease is nasty but she needs to maybe quit being so demands w/ her care. It makes your job harder.

I kept telling my PALS that I loved him but he had to give me a break.

Will keep you all in my prayers
 
Sophia, think about it this way... if you give so much of yourself that you collapse, is that really helping your mom? It sounds like you need to give her some tough love... she needs to let people beside you help her. She sounds like one that will never say "I appreaciate you".. so don't trouble yourself about it and know that you are doing your best. If it's never going to be enough anyway, you do what you can, you get others to help, and you accept that the best you can do is just that.. the best you can do! I don't quite understand why your other family members can't do half of what she needs... just because she's being difficult. That's when you all need to develop a bit of a thick skin and understand you're not going to be able to please her 110 percent of the time! Sounds like she's being fairly manipulative... at the expense of your health. Take a step back, try to take an objective look at what is happening, and like I said... if your health breaks, you both lose. Hang in there!
 
Sophia, these women have given you really good advice. I will pray the Lord gives you strength and wisdom to be firm with your mother. I'm by no means where she is in the journey, but do have three people who care for my needs at different times, and each has his/her own way of doing things. As long as they don't drop me, I don't have any complaint. Your mother needs to know that unless she accepts help from others, you will not be able to handle your situation. Your seven children are how old? I feel so badly for you all.
Praying!
Ann
 
Sophia,
I know somewhat of what you are going through. My dad had Dementia/Alzheimer’s.
My mom had just passed and my sisters and I worked, so we had a private caregiver in the home for my dad 24/7. My dad was so mean, that we could not keep any help. No one wanted to stay. After going through about four caregiver companies, we had to put him on meds and take him to an Alzheimer’s facility. He did not like it, but there was no alternative. I know you said there are no nursing homes that will take him because he is on a vent. Have you tried speaking with her doctor for advice? Maybe he/she knows of a facility that will accept her. I feel for you. I know how stressful it is to deal with someone who is wayward.
 
Sophie,
Call Social Services and/ or Discharge Planning depts at the hospital
where your mom was last treated.They could help you with a search
for a skilled nursing facility. Is your mom on Medicare,if so ,she qualifiies for
a 100 days of skilled care, because of the vent, every yr. Some hospitals have their own skilled nsg
beds set aside too. you need a break. I'm praying for you.
Pat
 
Hi Cris

Ive never heard ofdynavox/Eyemax system, Im going to have to do some research on it, and see if I can get the dr. to write an order for one. Cuz, Right now Im her interpret when ne one is trying to talk to her. Of what she says Ill get 1 or 2 word and piece together what she is trying to say. And she gets so frustrated about repeating herself, and feel i should no bcuz we do this everyday. As far the heart to heart, we've had a few of those. But they do know good, things will be fine for a day or 2 and it back to the same thing.. She feel like every1 is against her for some reason, and more she stays upset and has attitude all the time, she pushes people away.

I appreciate the suggestion about this system, I will look into.. And u for your response
 
Hi katie,

Let start by saying, You Took The Words Right Out My Mouth! What Happens If I collapse or something happens to me? Then what? I keeps saying this,what she doesn't understand even when Im sick or not feeling well, I still have help on a daily non stop no break.. On top other things,..Even when Im not physically helping her, Im doin stuff on her behalf when i should be resting. I get maybe 5hrs of sleep TOPs. But I have gotten to the point that I ve said exactly that, I cannot worry about trying to please her cuz nothing I do is never enuff. So I am to that point, I do what I can and give the rest to God. God , my husband and kids r theonly thing keeping me going right now.
 
Hi Abbas..

Thank you for your prayers, I appreciate it. My kids ages are as followed.. My oldest son is 15, oldest daughter 13, daughter 11, son 8, twin girls 5, youngest boy 4.. So we have a very busy household 8 )

The oldest are a BIG HELP!but I found myself asking them to do to much, and I have to remember they are still kids..
 
Hi judith

I know exactly what your speaking of. Mom was so hard on the nurses! And we had some really good ones too,that were willing to be patient but they just got fed up. And the homes they do have are might as well say out of town 3hrs away or farther. And I just can't bring myself to send her that far away. I finally built up to thenerve to say I was going to put her in hm, at least i could visit and help etc.But then I learn that bit of information, and it like i have to alt.. I called her caseworker, and she told me you can't go from home to nursing hm, you have to be in the hospital and transition to a facilty and then thatonly short term for maybe90 days.. I never heard such bull... But that what brings me hear,i thought maybe someone else going through the same, could offer suggestion im not thinking of.
 
Hi Pat,

No my mom does not have medicare, she has private insurance.. The medicare is a whole not sad story and dead end.
 
Hi judith

I know exactly what your speaking of. Mom was so hard on the nurses! And we had some really good ones too,that were willing to be patient but they just got fed up. And the homes they do have are might as well say out of town 3hrs away or farther. And I just can't bring myself to send her that far away. I finally built up to thenerve to say I was going to put her in hm, at least i could visit and help etc.But then I learn that bit of information, and it like i have to alt.. I called her caseworker, and she told me you can't go from home to nursing hm, you have to be in the hospital and transition to a facilty and then thatonly short term for maybe90 days.. I never heard such bull... But that what brings me hear,i thought maybe someone else going through the same, could offer suggestion im not thinking of.

Your Caseworker is probably saying that because your mom won't willingly agree to be put in a nursing home. My dad was like that. We had to place him in a Behavioral Hospital for 72 hours while they evaluated him and gave him meds that would help him. He was then transferred by the hospital to the Alzheimer's facility. We had previously made the arraigement with the Alzheimer's facility who accepted him.
I will pray for you that you can connect with someone who can help you find a facility. I am aware of the guilt feelings you have about putting her in a facility. I struggled deeply with those guilt feelings. But sometimes there is no other alternative. The Lord sees your heart and that you want the best care for her needs which will eventually cause you to collapse under such pressure. Please, don't let your feelings dictate what is best for your mom and you and your family.

Judy
 
Oh my gosh! I started reading your post and thought it was my sister or step-sisters posting about my mom! She lives in Houston and was diagnosed in March of this year. She is pretty much paralyzed from the neck down and we can hardly understand her words anymore. No assistive devices, yet.

Like you, nothing we do for my mom is good enough. She complains about almost everything and everyone. (But these were personality traits long before the disease set in). Her demands are endless. You can stand on your feet for hours trying to adjust her so she's comfortable. There are times we've just had to walk away or leave the room for a few minutes. Then when we come back she's fine for a little while. We've explained to her she needs to give people a break but that goes in one ear and out the other.

I read these boards as much as I can stand bc it makes me feel less alone in this. So many people have said, Enjoy all the time you have together, etc, etc. But that's kind of hard when you're so mentally and physically exhausted trying to fulfill every demand for someone that treats you like what you do is never enough.

This disease has not only taken over my moms life but all our lives. It consumes every extra ounce of energy we have. There's been no easy solution for us in dealing with it. For me I do as much as I can for her but I've had to set limits for what I'll do in order to perserve my sanity and my health. I just have to know in my heart I'm doing the best I can do. My step-dad (her caregiver 24/7) keeps on even though we've tried to explain to him he has to stop giving in to all the demands.

Wish I had some great words of wisdom. My sister constantly tells me, Just let what she says go in one ear and out the other b/c they are only words. Do what you can to take care of her and ignore the rest. At this point I don't think there's anything that will make mom understand how much everyone is doing for her. Maybe it's a type of survival mode. I can not begin to imagine what mom is going through. For me I have to keep telling myself that attitude is everything and I can decide if I'm going to let this all control my life, how I choose to respond to the stressors, my mind, etc. And sometimes I have to say no. Maybe that is my type of survival. I've had to accept that my life has done a complete 180. I've had to give up things I was used to doing, for now. But I'm not a full-time caregiver either. Sounds like you are giving 200% of yourself. At some point you have to be selfish and think of yourself a little bit. If you have nurses who are still coming in your mom will just have accept the care they give her. If they can care for her physical needs, competently, you need to rest b/c really no else can take care of her emotional needs. I'm sure most nurses are used to patients and their nasty attitudes. My step-dad always brings/makes mom's healthcare workers cookies, snacks, etc and it's amazing how much more accommodating they are!

I know my husband has really helped me a lot and cooks most of the dinners, does grocery shopping, etc at our home (2 hours from mom) and when we're at her house. He does as much as he can so I can focus on mom. Are your kiddos able to take over some house cleaning duties?

This is about you (and your family as well) as much as it is about your mom. For me I've had to make a conscious decision to not let guilt run my life. Doesn't mean I haven't had my break-down moments. And I fight constantly to not let myself get depressed b/c that doesn't solve anything. But I do allow myself a few pity parties here and there. Do the best you can but understand you have limits. You have to find a good balance. Do the best you can to meet your moms physical and emotional needs. Know that you won't ever please her so at some point stop trying.
 
Hang in there, Dear. It won't always be like this. You are strong and very special to be doing all you do... and maybe next year at this time you will look back and have no regrets. You even said you think she could be on her death bed now. Try to let some things go and take that time to rest. We care, so come here to vent. Bless you and your Mom.
 
Dear Sophie,

I'm so sorry that you are so stressed and that your mother is pushing all her anger in your direction. I am similarly all consumed with caring for my sister. It's so hard and my sister is a sweetheart. It just seems when you get something solved, ALS throws you another curve ball. I will pray for you! My only advice is to start lining up everyone involved and start demanding assistance from them. Your mother absolutely qualifies for Medicare, so get on your computer at medicare.gov and start applying for your mother online. Get your social worker from your clinic and demand she assist you with medicaid assistance through your state government as well. I have home health aids in the home 7 days a week after I got my sister's eligibility questions settled. You can get assistance and the government will assist. If you have any specific questions, drop me a line. I'll tell you what I did after you get started. Your mother is entitled and you need the break. There is a way. Fight for it. I did and I got every item I needed.
 
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