I'm new to this....

[Heather Bergstedt]

Hi. My name is Heather and my mom has bulbar ALS. She is 65 years old and was diagnosed last March. I am a married, stay at home mom of 3 children, ages 10, 9 and 15 months. My youngest son was born 2 months before we found out that my mom had ALS. I have wondered many times why God blessed us with Jameson (our 15 month old baby boy) at the same time as my mom's disease. I would have been able to help out more with her (my 2 other kids are in school all day) but unfortunately I can't right now. I do go over to her house a couple times a week at least to wash her hair or fix her lunch, or just help her with something. I know this disease isn't supposed to affect your mind but she isnt the same person she was last year. She almost has the mentality of a child. Her speech is very hard to make out and when she calls me I can't understand about 95% of what she says. She will not text although my husband bought her a device and we have showed her how to use it. I live 20 minutes away and when she calls I pack up my baby and head over to her house. Sometimes its something that could have waited, like "could you mail this letter for me?". My dad is her full time caretaker and this is obviously taking a toll on him as well. He owns a business and is a workaholic but has had to change everything since she was diagnosed with this awful disease. Neither one of them will even consider hiring any help which is very frustrating. My dad keeps saying to me "you have no idea what this is like..you don't live here." I find this very hurtful because, no, I don't know what it is like to be married to someone with ALS but I do know what it is like to be losing my mother slowly. I have one brother who is 3 yrs younger than me (I am 38) and we are all going through this ordeal alone. I have never been faced with a situation like this...where there is no hope at all. I am a christian and we are all praying for a miracle but I also pray that God would show her mercy and not let her suffer. She used to be a vibrant first grade teacher but now is completely hunched over, uses a walker,can barely walk, and barely communicate. The sadness is unbearable sometimes.

 

[CAHPAH]

Heather
I am so very sorry about your mother's diagnosed. As the primary caregiver of my wife who was diagnosed in 07 I know some of what you are feeling. You have found a good place to be on this forum. It is full of loving compassionate people who are not afraid to share their hard earned knowledge about ALS and what it takes to deal with it.

There is a small percentage of ALS patients that are effected with mental issues. Talk to your Neurologist about this.

After reading your post I'd recommend some counseling, perhaps some family counseling. Since you are a christian you might start with a good christian counselor. My wife and I found going to a Neruo-phycologist very helpful. The reason I recommend this is that it is so much easier to go through this with a good support system. Loving family who can help lift the burden. It sounds like you have a good start with you Dad and brother being there but I detect some tension between you in the way you describe your relationship with them. Trust me, you will never go through anything as difficult as what you are dealing with right now and you are correct in that all of you are dealing with it. You need to talk about that as a family. I have two daughters, 18 and 21 and we have had to learn to be open and honest with each other about what this is doing to each of us. Talking about it as a family will help but it is not always the easiest thing to do and that is where a good counselor can help.

Be patient with your Dad. I told my girls the other day that I know they are loosing their mother, but although it is happening sooner then they would like, it is a natural part of life. They are young with many things ahead of them. Some day, a long time from now, they will move on, get married, have children and one day find that they have not even thought about their mother in several days. That's natural. I, however, am loosing my best friend and soul mate, the person I have shared everything with for the past 30 years. Everday for the rest of my life I will miss her. I will want to share my day with her, express and opinion or ask for her advise and she will not be there. We had made plans to grow old together and that's not going to happen now. That is a lot for your Dad to deal with.

I've rattled on enough. God bless and keep you.

Jim

 

[irismarie]

Jim, that was such a moving and caring letter.
Dear Heather, yes, he is right. The tension does show through and perhaps you are thinking it is time your dad gave up a little on work? Time for him to change priorities, though it is all so difficult.
There are people on here with experience of the mental problems that can be part of this disease and I Know they will help you.
CAn you not just organise some care. WOuld they actually turn someone away? iS IT REALLY both of them who refuse, or is it your father's will - or maybe your mother's. IT DOES sound as though you all need to talk to someone neutral but caring. The illness is bad enough to deal without without all other undercurrents and worries

I send you love and admiration for how you are coping with such a hard situation.
Irismarie

 

[indigosd]

Heather, Jim and Irismarie gave you solid heart felt advice. Remember that ALS is a FAMILY Disease. It changes life for everyone. Your comment about your Mom "She almost has the mentality of a child" caught my eye. It caught my eye because what you go on to explain sounds like a communication issue to me and is what our PALS face constantly. Is it that she truly is not functioning or that you simply do not understand her and both of you are frustrated? If there is no diagnosed dementia think of how trapped she is without communication. I find it fascinating to hear that only a small percentage have dementia or that Bulbar is rare. Where do the Dr.'s get this information since there has never been any factual statistics gathered?! It seems like most of the new PALS are BULBAR! My husband does similar things. It is like he has lost his ability to be patient or lost the social skill to not interrupt...Is it a mental change or is it simply that they have gone so inside of themselves because of the ALS? Can you even imagine what is like for them and how slowly time must pass?
Is your Mom left alone during the day? She just may be frightened or lonely. It sounds like she is left alone while your Dad works because wouldn't you just phone your Dad and tell him that your Mom called you instead of packing up the baby and driving over there? Your Dad needs to arrange for someone to come and be with her so that she is not left alone or cut back his working. Maybe you could agree to do 3 days while your older ones are in school if it is financial difficulty for your Dad? Your Brother and his wife could also agree to cover some time-right? Is your Mom on any medications or using any equipment? Does she have a PEG?
ALL of you need to have some family therapy to deal with the changes-could you suggest that? I think that would be the most beneficial. If not, definitely find someone that you can talk to about the changes in your life. We have PALS and CALS your age that are losing their partner, young children that are losing a parent and live with it every moment in their own home. As ghastly as your situation is, there will always be someone that is suffering soul much more. When you spend some time on the forum you will see this and be grateful for the blessings that you have on this journey. :] There are always blessings. We also prayed for a miracle. I think that most of us do. Then there comes a point that we let go of our imagined control. We don't give up! We open our hands and our hearts and understand that we have no control and live every precious moment. If you want support and insight, spend some time on the forum and it will soon become your lifeline. As with everything in life, those that are living the situation are the ones with the most empathy and understanding. Sending you strength and gratitude for the care and love you give to your Mom.

 

[paleshia]

the als helping hands website helped us get some help organized during the day......sorry for the pain your family is going through.....this is indeed a hard road we are walking...glad you foumd us.

 

[JeffP]

my prayers go out to you and your family .i wasdiagnosed aug09 with bulbar als ansd my speech is bad sometimes not understandable .i see the pain in my wifes eyes as well as my 5 children which are grown up i have 7 grandkids and they notice the change but dont discuss it .it is very painful forv the whole family all are effected may god comfort you all to live life one day at a time and find a way to appreciate the time you all have left laughter brings out alot of that pain give mopm some sort of joy the best you can im praying for you