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jmaycavagnol

Member
Joined
Feb 9, 2011
Messages
17
Reason
CALS
Diagnosis
01/2011
Country
US
State
TX
City
Spring
My mom was diagnosed with ALS on January 14, 2011 after almost a year of tests ruling out all of other illnesses. She is having problems with upper body strength, has neck pain and is losing her fine motor skills. Her speech is slurred almost as if she has had a stroke and she has fallen several times.

She will be 74 years old this August and she lives alone in Indiana and I am in Houston. I have two brothers who live within 30 minutes of her and despite their close proximity are not involved in her life on a regular basis. She wants to move to Houston after living in the same city for 34 years and I have begun the process of trying to find her a place to live and sell her home.

I am so angry and full of grief that I am increasingly irritable at work and at home and I don't want to do anything but scream or punch a hole in a wall but I refrain from both. I can't sleep through the night and I am consumed by anger.

I am overwhelmed with Medicare, Medicaid, and Medical Directives.

My mom is worried that I will take her car away and has begun lying about her capabilites for fear of losing her independence.

My brothers have announced they are "broke" and their schedules are very busy--I am assuming that this means that I will be my mom's primary caretaker.

I am consumed with anger and snap at people and walk around with a scowl on my face all day and all night long.

I just don't know how to cope right now and I am full of guilt about our very bumpy mother-daughter relationship and I am so very scared about the responsibilities of being her care-giver as well. I am terrified of watching her progress and I do not even know how I will handle it when she dies.

I feel completely alone even though I have an amazingly supportive boyfriend and very caring friends. I am so angry at my brothers and I have some friends who are unable to handle this news.

I have contacted the Houston ALS Chapter and will be attending the local support groups and we are going to be participating in some fundraising events.

I just don't know how to cope with my mom's diagnosis and be strong for her at the same time...everyday I think that this may be the last time that I talk to her.

I can't even imagine what she is going through and I feel so selfish having all of these emotions when she is the one with this awful disease.
 
That's one of the worst parts of this disease, the way that it affects the PALS families emotionally, financially and even physically. I am so sorry about your Mom's diagnosis and about how your brothers are reacting.

I hope that the support group will be able to help you and if we can help please let us know. There are many caring people here and we know what you're feeling.

Welcome to the forum family.
 
I am so glad you're in touch with a support group... tht should be a huge help to you. You might also want to consider getting some counselling.... ALS is frequently referred to as a "family disease"... it's perfectly rational for you to be feeling overwhelmed right now! There is so much to be done immediately after diagnosis. Hopefully you will find as many of us did that after the first rush of getting everything in place, things settle down to a more manageable craziness... at least you settle into some kind of routine. And please remember that hard as it is, self care is of huge importance to you right now. Eat right, get your rest and try to do something just for you on a regular basis.

Take care.
 
I am very sorry about your mom's diagnosis. It hurts to the core! I am from a family of 7 kids and I cared for my mom for 7 years before she passed. It was not always easy but now I am grateful for the time I had with her and our relationship was strained as well but God made it work. That was in 2007 and now my young sons are helping me and I am 51.

I hope that you are able to be loving to your mom inspite of your differences and enjoy the gift of time you can have with her. Each day is a gift with this disease. I pray that God will comfort you and help both of you during this difficult transition.

Blessings,
 
Sorry about your mom. Sorry about the lack of support from your family. You are not alone.
 
Thank you for the repplies; simply talking about how I am feeling has been a help. I have had sleepless nights since Mom's diagnosis and I am trying to very hard to stay positive and strong but it is struggle every day. Mom & I talk every day now instead of once every two weeks and our conversations have their ups and downs as she is coping with her own diagnosis.

she has started to tremble in the mornings and I am wondering if anyone has had experience with this?

The doctor has put her on anti depressants (which I think I may consider too) but she is still struggling with sleep.

Mom is trying so hard to act as if she nothing has happened and maintain her indepedence and I am wondering what others experiences have been dealing with the conversation about living alone and driving?

The ability to talk about this and breathe has been a help already...
 
Do consider consulting a doctor about taking antidepressants. Your grief and anger are not surprising.

Don't let the failure of your brothers taint your life. Don't expect any help from them and move on. You are doing the best you can and should be proud. Counseling would be a great idea. Are there any free services in your area?

Lorna
 
Let the doctor know about her sleep issues. She may need something besides antidepressents to help her with the sleep issues.
 
My mom has also been telling me that she trembles all morning long. She says she thinks it may be from the anti-depressants but to tell you the truth she has been on and off anti-depressant meds for about 20 years so I am not so sure that is reason for the trembling.

Mom has an appt with her GP in a week.

I hate to ask this because I feel bad saying "bad" things about my Mom but she is having almost spontaneous outbursts of meanness...she does not even realize what she is saying so I try my hardest to ignore it.

Also, what is the best way to discuss venting and feeding tubes with my Mom? I would like for us to have the conversation now so that we can get her wishes documented and discussed but I don't want to upset her. Any thoughts are appreciated.
 
See the thread near or next to this one on "EL...". You might want to give that a quick read, especially when the subject of FTD (a form of dementia) comes into the thread. I'm referring to her outbursts you spoke of.
 
I feel very sorry for what your going through. The news is never easy for anyone and how I deal with it is I know everyone has to take their own path. I have had some people i consider good friends pull away since the news. I believe it's just too painful for them. It's OK. I thank god your mom has you. You didn't have a choice because of your brothers. Take some time for yourself after you catch your breath. I pray god grants you the strength you need.
 
Your mother's doctors are probably going to bring up the subject of advance directives with her. They will surely be asking her to think about the feeding tube (PEG) and about breathing helps. When you're together ask her if you may go with her into the examining rooms and listen (learn). They don't bring these things up the first visit with a newly diagnosed patient, but they know how she seems to be progressing and will be asking.

Both you and Michael may (hopefully) find your friends returning. The best advice I can give you for those who pull away is to act naturally around them. I don't mean you should fall apart, obviously, but neither should you pretend that all is fine and business as usual. I've seen the frightened friends return and become a rock for me. I think the key was to let them take their time and ask nothing of them. Michael is right concerning it being too much for them in the beginning. I'm so sorry for all you're experiencing right now. I, too, pray for you both strength and peace.
Ann
 
Good morning---I have been crying and screaming (alone in my house) a lot this week. I have refrained from yelling at my "friends" who keep asking me "what's wrong" and if "they have done something to upset me"------ummmmm; perhaps they missed the part that my Mom was just diagnosed with an awful fatal disease but yes it must be about them?

seems as though my friends from my junior high school/high school/college days are the ones that are coming through even though I have not spoken to or seen some of them in years---funny how things work out.

I am having real trouble with Mom's meanness----she has always been a mean, judgmental, critical, cold woman but wow....she can really dish it out lately and then acts like nothing is going on----I feel bad because I do not even want to talk her some days bc I need a break but I think about what if she dies and I did not speak to her that last time

She says silly, nasty things and then will say "i love you" and I think "uh, I don't really feel love right now" and there are times I hang up the phone with no response and then I beat myself all day long about it.

I am glad to hear that the doctors will more than likely bring up the topic of advance directives bc I just can't bring myself to discuss it with her. My brother died in 2001 from a motorcycle accident and he did not have any medical directives and we (the family) made the decision to turn off the ventilator and that was the hardest and worst thing I have ever done in my life.

thank you for the prayers of strength and peace....I find myself praying a lot these days
 
This is one of the toughest journey's you will take, but thank you for taking it with your mom. From what you have said, your mom's personality was a challenging one before she was diagnosed, her diagnosis is not going to change her personality. When people are under stress, they often revert to what they know best for coping. I understand the sleepless nights( as I sure everyone here does as well), the worry and the frustration when someone who you care for is putting themselves at risk in an effort to maintain independance. Please, please make time for yourself and cut yourself some slack. I know this has been said before but its worth repeating...if the caregiver isnt healthy, they cant give care:) . If you have an appootunity, talk to your mom's DR's and her care team, they will( should) help you through the questions and concerns. Also take advantage of whatever couselling and support that is offered for caregivers/family members. You are doing the best you can, remind yourself of that everyday!
 
Hello, I am right there with you, my husband and your mum were officially diagnosed on the SAME day Jan 14th 2011 with Bulbar onset ALS ( probable diagnoses dec 2010), I am climbing walls every day & going out of my mind & have decided I need to regroup myself and head to a gp office soon to get much needed anti depressant because I will not last the stress, perhaps you might need to do the same.

Have you ever heard the song "hold my hand" by Michael Jackson? I am sending it to you here from my channel in the hopes you understand that I am holding your hand spiritually YouTube - PeopleNeed2LoveMore's Channel much love to you from Kim.
 
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