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jbird

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I hope I don't hurt anyone's feelings...I am grateful that many of you are coping and getting around. This forum has lots of great ideas and information but...
I have not found one person anywhere that is going through what I am. My husband diagnosed only in July '05 with ALS, bulbar symptoms and frontal lobe dementia. The doctors say this is not rare but it sure seems to be. Out of all the many people I have talked with and sit hear and read about not anyone has these problems from the get go...What does this all mean for my husband? Am I missing something?

I have wonderful family and friends but nobody knows really what I am going through...it is lonely not being able to have normal conversations with my husband. He is not able to help with any decisions. His right side is almost completely paralyzed. It is moving rapidly to his left side, it is at his elbow now. Eating is tiresom, gets choked even on soft foods. He is having another barium swallow done next week to see if he needs the tube or not. He is wasting away in front of our eyes... I try to stay strong for my kids but it is hard to do at times.

You see my husband was the best thing to ever happen to me and now I have lost him not physically but mentally and I don't know what to do. Just keep loving him...

Sorry for being long winded but I am grateful for the opportunity...

still praying for a cure,
Jbird
 

Granny

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May 18, 2005
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Dear Jbird,
Sorry for what you are going through. I only knew of one person who had frontal lobe dementia with ALS. You have an even harder situation than the rest of us.
I have no great advice, just wanted you to know that I am thinking about you, wish I could be there to give you a hug. Post whenever you need to vent your feelings, and we will listen.
I, too, am praying for a cure.
Leah
 

Snowbird

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Oct 7, 2004
Messages
61
Hi Jbird!

Lots of love and hugs to you. You definitely have a challenge to contend with. I agree that losing the conversation is much worse than dealing with the physical challenges, at least for the caregiver. My dad suffered with Alzheimers for 3 yrs and then passed away. However, for the patient, ALS alone is far worse than Alzheimers.

Here are a few suggestions. Yes, keep loving him and reassuring him constantly. At the same time, your needs are very important, or you will go down with him. That must not be allowed to happen.

What I did when Jack did not want to talk much was watch DVD movies with him on a small screen DVD TV that I had taken to the hospital. It kept my mind on other things, and it reassured him that I was right there with him every inch of the way. Housework does not exist around here. Rest was far more important.

Somehow it helped me get through this with him. If I dozed off, I allowed myself that luxury. Also, a warm or a cool cloth over your husband's face a few times a day will be very comforting to him. It also gives you a good feeling for helping. Changing his position often is mandatory. Even small changes. We always must watch for pressure points, such as the ankles, arms, etc. I hope that you have lots of pillows. If you find it easier, put his bed in the living room in front of the big window. Then he can gaze out the window. You can always pull the drapes for privacy. I also took several satin pillow cases to the hospital because it was easier for the nurses to re-position Jack's head on the slippery surface.

Between family & friends, there should be enough relief for you to get out of the house and do whatever you want, even if it is only going for a 30 min walk. Everyone told me to look after myself as well, and I said 'ya,ya', knowing that I really didn't have the energy for myself.

I felt such a huge relief when Jack passed on to a better world in my arms, and within 2 weeks my blood pressure returned to low normal. I only looked 110 yrs old the first week after, and then 100, and then 90, and so on. I am still not back to normal, but it all takes time.

Be careful not to beat yourself up. My psychologist told me that I did not choose to make Jack sick. Therefore I have no reason to feel guilty. No one chooses to get cancer. However, if a person chooses to drive after drinking and kills another person, then they have GOOD reason to feel very guilty. When he put it that way, I could see the light.

There is lots of support here. If you feel like crying or screaming, tell us and we will do it with you. You are never alone. We do understand.

Remember that ASL is "About Loving Someone!" God I love that slogan.

Pat
 

MLECOLE

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((((Oh jbird))))

Just want you to know that I'm thinking of you. I've never known of a pals with the frontal lobe dementia and can't imagine what you're going through with your husband. I know just dealing with the day to day aspects of ALS can be exhausting. And snowbird is right - be sure to take care of you (which none of us do enough of).

Keep your faith, pray alot, do your best for your husband and turn it over to the Lord. Heartbreaking as it is, with this disease there's only so much we can do as caregivers who love as much as we do.

You and your husband will be in my prayers, and I hope you can get some answers soon.

Hugs to you friend,
MLE
 

Carol Deboer

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May 7, 2003
Messages
343
Hi All,

I agree with Pat. As hard as it is having a husband with als, it must be tremendously harder with dementia. I cannot recall hearing about someone with both of these ailments at the same time. Keep your chin up. There are lots of things that you can do to make you and your husband feel comforted. I know it is a hard road, but I just sat with Henry most nights and we talked and laughed at the tv, read the bible, and I laid beside him every night and hugged him. The human touch is so important to als paitients. I hugged and kissed Henry all the time. Grief is a horrible thing, and you will experience greif now and then later. I have to remind myself all the time that he is not suffering now, and in a better place. That gives us all much comfort. You need to know that things in your life will never be the same, and that you will be okay, never the same, but you will be okay. I know. I hope that you have a good support system in place with good helping hands. This is a job that is almost impossilbe to do on your own. I thought that I could, but boy was I wrong. It is hard to humble yourself to the thought that you need help, however, I would not have survived without it. Good luck to you both, keep the faith, and remember that we are here for you.

Stay Strong..... Carol
 

Snowbird

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Carol, I love the way that you mentioned the human touch. You are so right. The human touch is very important to anyone, but especially ALS patients because there is nothing they would like to do more than to touch and hug us, but they cannot do it. Our connection to them at least allows them to still feel connected. Also the voice is so important. They need it more now than any other time in their lives.

Your comment about accepting help.............well, I wanted help all along, but Jack would not accept outside help. He would tell people, 'we are just fine. Pat is fine.' That was so hard for me that finally one day last December I flopped on the couch and said 'that's it! I'm done! I can't move. I can't do any more.' That is the day that I also cancelled my own appt with the orthopaedic surgeon re my knee surgery. Now I will be seeing him this week.

Anyway, our home health care co-ordinator came along and sat beside Jack and likely talked to him for well over an hour. She would not leave until he agreed that she could have the handi-van come and pick him up for respite. I slept for about a week. Even when Jack finally agreed to homecare so that I could get out of the house, I never did go out. I just went down the basement and slept. Right now I could sleep 20 hrs on some days and maybe 5 hrs on other days.

Tomorrow I am seeing a therapist because I have a lot of issues to work out. We had such a great relationship, and now I don't know what I want. I have such a huge void in my life now in several areas. Jack is at peace, and I am at peace regarding my life with him. I am not at peace with my present life and the unknown future. I know what I need, but I don't know what I want. Actually what I need is the human touch again, and also a companion that would be somewhere near as close as Jack & I were. It sounds complicated, and it is.

ALS does not just affect the patient. It affects all of us. We are all one big supportive family. No one else can imagine what this is like without going through it.

Those of you who actually have ALS, what are your opinions on this? How do you think that your illness affects your spouses, your children, and your friends? :?: :?:

Pat ......ALS (About Loving Someone)........I love it!
 

Al

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Hi jbird. There is a lady at the ALS clinic I go to that has dementia. Her husband is just totally devastated by it. Just a year ago she was a bank manager and now can't talk or walk. When I first saw her I thought she had had a stroke. I am sure he is going through what you are going through. He doesn't post on the forum but the next time I see him I'll ask if he is aware of us. I think he may have overheard me talking to others at the clinic but I'm not sure if he has a home PC. You aren't alone here. We may not be able to offer much good advice but we do care.
 

Timshelper

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Nov 11, 2003
Messages
154
Hi,
This is definitly a double blow for you. Working with my residents most of them who have dementia is an ordeal in itself but to have ALS with it must be devastating especially for you. I say this because with dementia it hits the psyclogical, emotional parts of the brain and then to have the physical disabilities on top of it with the ALS puts the caregiver in a whole different perspective of what is really going on. I dont know how bad the dementia is but one day I'm sure or the next minute you would be talking to your loved one and feel like your making progress about past memories or just daily living and the next time you talk there is absolutley no memory of it. At least with ALS even though some may not be able to express themselves you know in their eyes that they know whats going on around them. The only positive thing I can see is that your husband does not know he has ALS but which is the better in the outcome. For you unfortunatley nothing at all you have lost the physical and emotional part of the person you love. I also wonder if he is on any medications for his dementia which keep him more sedated than needed in my opinion. Keep the hugs up and definitly turn to some support system you are going to need it. We are all here for you with our prayers and to offer any help even though none of us will really know what you are going through and cannot pretend to.
Kim ALS About Loving Someone
 

jbird

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Jul 28, 2005
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31
You all are so great...thanks for listening and thanks for all the support. It is a great feeling. I appreciate all the kind words and the advide. I will take it to heart. I will vent ocassionally and keep you posted on my husbands progress. He is a wonderful man!
I am thankful for you all and for all the great family & friends I have. It does make this terrible situation a little easier to deal with when you have the support.

Love and hugs to you...


praying for a cure,
Jbird
 

jbird

Active member
Joined
Jul 28, 2005
Messages
31
You all are so great...thanks for listening and thanks for all the support. It is a great feeling. I appreciate all the kind words and the advide. I will take it to heart. I will vent ocassionally and keep you posted on my husbands progress. He is a wonderful man!
I am thankful for you all and for all the great family & friends I have. It does make this terrible situation a little easier to deal with when you have the support.

Love and hugs to you...


praying for a cure,
Jbird
 
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