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llacort

Member
Joined
Aug 16, 2010
Messages
14
Reason
CALS
Diagnosis
07/2010
Country
US
State
NY
City
Merrick
Hi All,

My husband was diagnosed with ALS Atypical July 9, 2010. This after a year of seeing specialist after specialist. His ALS specialist ordered a neuropsych. We had that done and the doctor suggested I join a caregiver's support group asap. I haven't been able to find one specifically for ALS caregivers in my area which is Long Island New York. The doctor's words were "you are 70% sane now, but if you don't join a group asap, you will be 70% insane". They are saying he seems more likely to have Multiple System Atrophy which is pretty much the same thing as ALS with other symptoms. My husband had been having outbursts, he was upted his depression medication and I'm afraid to say it, but it seems to be working. I have so many mixed feelings. When I'm at work I think I will be more patient when I go home, but just the opposite happens. As soon as I walk in, he seems to have chores for me to do. Maybe not chores but it seems like I'm constantly going. I'm feeling low because we loved vacations that involved walking not resting and I keep going to the library and on line to find the right vacation. Fact is that when I actually see him, I say I'm in la la land. We don't even manage rides because he's exhausted after a shower. Even if he takes one the night before, it just doesn't happen. The heat this summer certainly doesn't help. I know some say a cruise is the right vacation, but we never were into that. I know you will say forget the past and move on but he is not agreeable to this. Some say rent a house on the beach and relax, but I CAN'T relax. I don't know how. I always have to be on the move. I'm just feeling down about our life in general. There is nothing to look forward to. I know from what I read on some sites that do what you can NOW, but he doesn't want to and it's kind of delicate to say now or maybe it will be never. Anyhow, I'm rambling and am looking for a wife who is in the same place as I am. I know I need to connect with others. Thanks for reading my self-pity.
 
Honestly, I cried a little when I read your post. I know EXACTLY how you feel. We're a year and a half into this life of instant old people. (We both just turned 50.) Neither one of us is used to sitting around taking it easy. My parent's were working, active and energetic until the last days of their lives. His parents rarely get out of their chairs. My parents enjoyed life, his parents are not living, they exist. We "planned" never to be the kind of old person his parents are, but we find ourselves in the same place. It's hell. We snap at each other (putting it mildly). I'm constantly doing something for him, so I'm not really sitting still, but there is no cardio workout involved in what I do. At night, I pray that I will be more patient in the morning, but I've found that if I am "kinder" the demands really pick up. It's almost like the arguing keeps him occupied. Makes me CRAZY. If it weren't for the diversion that the 2 children (17 & 19) and 3 shih tzus create, we would lose our minds completely. I load him up in the van on Fridays and take him to meet his buddies. I take him out in the back yard in the early morning and let him enjoy the fresh air. We have visitors at least a few days a week. It is still boring and exhausting beyond words. He blames me for the boredom, but in truth, he cannot handle much more.

Your neuro is right. Find a support group. Check with the MDA/ALS Association. See how many people in your area are battling ALS right now. There was no ALS caregivers' support group until I checked that out. There were so many people within 50 miles of Memphis that we started a group. Keep working AS LONG AS POSSIBLE. This will keep you sane. I miss it so much, words don't desccribe it. I now pay an old highschool friend of my husband's to come in and hang out with him a few days a week just so I can get out. When she offered to do it for free, I said no because I needed to know it would be treated like a job. After a year of 24/7, I need to be able to count on getting out of here! If you can't put a group together or find someone to give you a break, come here often. The people that are on the forum regularly will bend over backwards to support you. Be prepared for the pain of losing them along the way. I do think in the long run, it keeps me grounded experiencing the pain of losing people I've never met but have grown to love. It reminds me that my time with my husband is limited.
 
I gave my husband strict instructions to get help to come in daily when the time comes I can't do for myself. He's self employed but he loves what he does and I don't want him to be sitting with me all day. Right now I'm ok. I don't want him or my 11 year old to be a 24/7 care giver.
I'm not the demanding type but who knows what I'll turn into. I told him our daughter comes first, he needs to attend to her. I don't want her to miss one minute of her childhood.
As for friends, I guess this will show the true ones.
My prayers to all you caregivers, you are angels on earth.
 
I understand how you feel. Very difficult. Plan a vacation. Having something to look forward to will change your outlook and the way you feel. But keep it simple! Find a resort within driving distance that has handicapped accessible rooms (roll in showers are nice!) and restaurants on site and activities you can enjoy together or alone. It is nice for someone else to make the bed and put out clean towels! And when someone is too tired to go out, room service and a movie or a book isn't so bad. Look for a place where you can pull up, park the car and not need it till you leave. It is fun and there are many resorts like this. The mountains are cool this time of year and alot of places have trails that are paved. A little fresh air is good for everyone!
 
What about a vacation that does involve movement but not exhausting movement? For example, I just went to Chicago with my family and because of my limited mobility we just took it easy and did what we could in the day...didn't push it. One day we went to the aquarium, another we went to the science museum. Every state has aquariums, zoos, and museums...and they are air conditioned so you can beat the heat! Maybe even there is a ADA accessible nature walk near where you live? This way you are getting out and doing something, and you don't have to worry about the pace...you go at your own speed for the day. I very much enjoyed this and felt like I was still doing something constructive instead of just sitting in a room all day. Best of luck.
 
Your husband sounds a lot like mine. Bruce has lost all interest in all of the things we used to do. Even watching tv shows together. I really know how you feel. Like I have nothing to look forward too either. Sorry you are dealing with all the same things most all of the CALS go through..
 
If you don't mind a husband chiming in:

As they say on the airlines: Put your own seatbelt on first, then attend to your loved ones.

Personally, I take anti-depressants and sleeping pills. When I get so bad that I kick a door or punch a wall, I get a replacement (one of my kids) and take the rest of the night off. My PALS totally understands and supports this.
 
Just wanted to say hello and I know how you feel and the struggle involved. There's loss on many levels. Depending on progression, remember that when planning a vacation there's a good chance your husband will be able to do less than he can now...and everything, everything, takes longer than imagined or planned. I worked until i was told to call hospice and that my husband could die any day...that was april.
sorry gotta run right now..
 
Thank you all so much for your posts. Since I posted, I haven't had time to check back. Problem is I was able to check the posts at work occasionally, but the summer is very busy and when I get home, well you know how that goes.

I know I NEED to keep connected to all of you. Thank you for not making me feel so selfish. I hate myself for not having what it takes. I think how can you allow yourself to feel so badly when I turn around and see the struggle Joey is facing. He's walking but very stooped over. His walk is odd. He puts his toe down first and then the rest of his foot. He was very disappointed with the brace that was fitted to him. It didn't really give him the support he thought it would. His hope was that it would enable him to go out on his own and drive, even to just get a bagel. I don't think he should drive at all, but I can't imagine knowing you are losing more and more independence.

Thank you for all the suggestions regarding vacation. I thought about all the things you suggested but the biggest problem is his breathing. He's on the BIPAP more and more. He's off an hour or two and then back in the bed for maybe three hours. I suggested using the BIPAP in the car with the adapter but he's not open to that. All the thinking is exhausting in itself. Ramble, boy am I good at that.

I am so scattered. I have a compulsive personality and when I get going it's hard to let go. Anyhow, now I stopped thinking about vacation because just a trip to the PT shoots the day. Maybe the fall will change the perspective.

Someone said you feel like you are the old people. Wow does that hit a cord. True we are not young but wherever we are, we see the people bent over and using a rollator or wheel chair that are OLD and that look of despair on their faces. That look of despair is what I feel my face looks like. I remember it well, when my dad had that face when he was the caretaker for my mom.

Do you find it hard to hear when people are talking about happy things? I don't want to hear it. It's a constant reminder of the loss. The knowledge you can never go back and see what you hoped you would in the future. I know nothing is going to get easier. I want to feel strong but all I feel is a weakness. I know there are lots of people who are great at caregiving. I know I'll never be one of them. It scares me.

I went to the movies myself yesterday to see Harry Potter of all movies. I went from work. I enjoyed it. I don't think Joey was crazy about the idea, but he knows I've always been independent. It still is odd to know you have to do things by yourself. I think of our last trip to Yellowstone which was great, and though I'd love to see more parks, I can't imagine enjoying that ever again without Joey. We were never group people. We always did things just the two of us. Now you would think we were an ideal couple, (far from it) but still the common ground was always that we enjoyed walking vacations, sightseeing vacations and our beautiful National Parks. I can't stand thinking of this loss. I'm gonna stop this rambling right now. Thank you from "crying on the inside" me, and your support.
 
It was so good to read your post. You do sound a lot like me. I would like to keep in touch with you. My husband's diagnosis was close to yours. It hit a nerve when you said the nicer you are, the more the demands. My husband said "I think you're happy when I go to sleep". There is some truth in that because you can relax then. When he's up and I'm around, he notices or misses what he did and then asks me to do it. I feel like I want to change my name sometimes. I say, "yes Joey" when he calls me, but I know I say it sarcasticly. We came back from therapy before dinnertime. That seems to be our outings. A shower means I need to shave him, he is exhausted and the plan, what plan? never happens. It is so depressing. I can't imagine what it is to be him. He's housebound now and very bored. He has no interest in the internet. He has no interest in technology. He didn't like using a remote for the tv until two years ago. Can you imagine that? He's reading a book on Lena Horne and that's all he wants to talk about. I get so ansy. I wish he had communication with people like himself but he has no interest in that either. I wish there was someway he could be occupied with someone other than myself.
 
Hi my fellow supporters,

I'm not good with navigating around forums, but I'm looking for some friendships and possibly finding someone in my area (Long Island New York) who knows of a good caregiver support group. I know Stoneybrook has one for PALS and their caregivers but my husband (PALS) is not interested and I am so I would prefer a caregivers group.

With summertime here, we thought we'd at least take some rides but his breathing is so labored that he's on the BIPAP more and more. The weather here is humid and very hot and isn't great for taking day trips anyhow.

I wish Joey would connect with others that have ALS but he's not interested in technology and truthfully I don't think he would have the patients. Maybe even speaking with someone on the phone would help. He's not into that either. I strongly believe in support groups. Does anyone have any ideas on how to get him connected? The only thing he goes out for is PT when I take him two times a week. Not much of an outing. There's got to be something to look forward to and be happy about.

Any ideas?
 
Maybe you could call the ALSA and ask about volunteers that would be willing to come visit with your husband, to chat (I take it he can still talk). There may be other local volunteer organizations that you could tap into, or churches. You also might try the New York Cares Organization.
 
My husband looks forward to company ~ particularly, out of town company. Fortunately, I have two bedrooms upstairs. The children have learned that they have to "float" when we have out of town guests. Since my husband is so happy and occupied when we have people staying at the house, they don't mind! We just got a call from an old friend, and she, her two children and dog will be in this weekend. It's a lot of work, but my husband is smiling and will be easier to deal with this week! That makes it worth it!
 
Hi All,
One year and 2 months after my husband's diagnosis. I see a decline over the summer. He was able to drive about 4 months ago and got himself to PT. He would eat out and it would make him feel more normal. After he fell on his face, broke his nose and would up in the emergency room, he has not been out by himself. He thinks he is feeling worse because of the summer. He keeps asking me "did I get worse"? I know he doesn't want the truth so I say no. He is on the BIPAP more and he just got a Trilogy in addition. Yesterday we got a toilet bowl assist. One of those that go over the bowl and have handles. We brought up the walker as the cane doesn't seem to be enough. Bought a tray to go over the walker so that he can bring his beverage around without spilling. It has been very stressful. He's very angry (understandbly so) but he is very intollarant with me and my son. When he is unreasonable, I try to explain which further inflames him. I have to learn to ignore and talk to myself. I still haven't gone to a support group. Can't find one that is close or convenient. I did go to a therapist and she helped me to see things in a different way. Any how, would love to hear from other caregivers on how they cope and keep sane.
 
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