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trying to stay positive

Distinguished member
Sep 17, 2007
Chicago area
As many know, my DH was DX 8/07 with ALS. Now I swear this isn't a pity party, I am just at my wits end. My DH is SO negative. At this point he seems to be fairly slow progressing and has limited use of hands and arms, as well as weakening legs. He is still able to walk without any type of assistance, just not for any distances. He had to stop working at the end of Feb. & is having a hard time adjusting. He goes to PT, reads, watches T.V., plays computer games and goes to the library once in awhile. He is depressed and bored, and any & all suggestions fall on deaf ears.:( Not only that, but he doesn't socialize at all. Even with me. He only speaks to me when necessary. He says he's not angry with me & appreciates all that I do. He refuses counseling or any type of antidepressant meds., does not want to go to church with me, etc..:cry:

I am beyond frustration. I know ALS is a horrendous disease, but there is this oppressive cloud of negativity that is hanging over our house that is so thick it is almost tangible. I am concerned that once school is out for the year our daughter (just turned 15 :-D) will also be affected by all this. I am at the point where this is affecting not only my emotional health, but my physical health as well. I am doing all I can to alleviate this, ie: therapy once a week, counseling with my minister, a prayer class at church, exercise, antidepressant meds, etc.. I am tired ALL the time, have gained 10 pounds, and am finding it increasingly difficult to keep all this negativity at bay. I noticed that my physical symptoms improve when I get away from my husband and the house for awhile. :-? But I can't be gone all the time! I don't mind all the extra work, responsibilities, etc.. What I DO mind is all the gloom and doom that I feel like is dragging me down and suffocating me. :oops: :cry: On top of it all, we are still trying to sell our house, and have very little close by support.

I have been wanting to submit a post like this for quite some time and have hesitated. But people here do not seem to judge, so I finally got my nerve up. Thanks for listening/reading.

Hi Linda! I had to give it a lot of thought to reply to your post. I am so sorry to hear about what your family is going through. I am telling you from the get go, I am not going to be of too much help, and I am so sorry for that. I know exactly what you are going through. I went through the same thing when my son was sick with this damn disease. I cried a lot, and did not/could not smile the whole time my son was sick. I had to force myself to act normal in front of him, but I was dying and crying out loud on the inside, my heart was breaking, and I could feel it, but I had to hide those feelings for his sake. A lot of times I had to go to another room and cry, and he watched me like a hawk. I tried to hide my face, and not face him, but he would always find my face, and he used to say, "Mom, you been crying." It was so hard. Linda, it is hard when you know that your loved one's days are numbered, and you are there to watch them wither away. I am so sorry Linda I had to put it this way. The only thing I can suggest is pray. I did a lot of praying, I ENDURED A LOT OF PAIN. My hear goes out to you. Just try to stay close to your husband, and let him know you care. There is so much I can tell you, but it's kinda hard for me to relive it all. As a matter of fact today marks the 11th month when my son passed. May God bless you. Keep us posted. I hope I didn't make things worse. Why tell you different? I would hate to lie! Bless you and your family dear.

Hi Linda,

I know it is so hard. I feel fortunate as my mom is upbeat and sooo positive about her disease, and it is still sooo hard.
I would reccomend a caregiver support group. Mine has been wonderful. It is through my church, however I know hospitals, and other organizations hold them as well. If you don't currently have one at your church, perhaps you could start one. You are not alone, there are many others going through the same trials. It isn't fair, but it is always easier to walk through your pain with others by your side. Many a caregiver have gotten sick, or even failed before the one that they are caring for. Take care of yourself, if that means setting up a care team to stay with your husband, getting out at least one day a week, doing some things for yourself. We asked my mom to make a list of all the things she would like to do, see, read, watch and we are plugging away at those things. She seems to be very cheered up by her children and grandchildren. Does your husband have any favorite people, can you schedule some visits with them. How about some good comedy on DVD. Sometimes when I am all cried out, I just have to put in something to make me laugh.

God Bless You, I will be praying for you.
CAL to Mom- Jeannie PAL DX 9/06
Hi Linda- don't underestimate what you are going through. Caregiving is one of the toughest jobs in the world. It makes things a bit easier when the PAL is willing to accept meds or outside help or equipment, or when the PAL is accepting of his or her condition, for that matter. But everybody else is right when they say you may not be able to change his attitude. I hope you keep doing all you are currently doing for yourself. You deserve it!
Hi Linda,
I am sorry to hear about your husband. This diease is so hard on everyone involved.
I too am taking care of my husband fulltime. He didn"t want to go to support groups
or counslers either. It is truly the worst illness to have. My husband was DX nov 06
and is in his chair most of the time. I bathe, feed, lift, ect for him and take care of our
three kids. His attitude is always sad and angry. He is on antidepressants and it has helped some, but the emotional swings are huge. I hope he can come too terms
with it all. It very hard to stay positive. I know myself that I have had my moments
where I have lost it, but I think it is part of the process of dealing with the stress
of it all. I finally just told my husband that we have to make the best of what we
are dealt. I try to get him out to the kids games and to see our friends. All you can
to is be there and give him the support he needs. I will pray for you all.

It makes me so sad to know that others are in the same situation as my mother. The one thing I have to say is please do not ever feel guilty about your feelings or talking about them. As unfair as this illness is on the person who has it, I almost feel it is twice as unfair on the caregiver b/c yes, the person with the illness has lost so much of their life, the caregiver loses just as much and almost more in some sense b/c they ARE able to do things and function normally, but can't - their life is on hold to care for someone who desperately needs you all of the time. In some sense, that seems like more of a hell to me than the person who has lost everything. I don't say this to make is seem like we feel my father is a burden in any sense of the word because we are so happy and feel so fortunate that he is still with us after 10 years, but I feel so bad about the toll it is taking on my mother. It's bad enough watching my father waste away. MOst of the time, he has a very good attitude and is very funny, but those times when things are ugly, they are REALLY UGLY and it really is hard to deal with . He also keeps to himself and refuses many invites , but even when he doesn't it's very hard to even have visitors b/c someone has to be there to translate so it really doesn't give my mother a break ever. She has had the same feelings as you, Linda and I have repeatedly told her to not feel guilty. How could you not have those feelings? You have a life too. You have an enormous responsibility caring for your husband, your family and keeping your emotions as well as everyone elses in tact. It's all so overwhelming.

After 7 years of caregiving and reaching the end of her rope, my mother finally found out through their primary care doctor that they have coverage for hospice. NOt the part of hospice that everyone is familiar with where they come in when people are no longer able to be helped. There is another division which is essentially nursing care. Their insurance paid for 1 hour 3 times a week. This was a God Send for my mother. It's not alot of help or time, but just in that hour, they would feed him a meal or just shoot the breeze with him and it gave her a break. They are familiar with various handicaps and they did really well understanding him so someone didn't need to sit their and translate. He ended up REALLY enjoying their company and having a new face in the house several days a week broke up the tension and helped with the depressed/angry feelings he was having more and more of. The nurses were very good with him and on a few ocassions he had one of his 'blow ups' and they were actually able to help difuse the situation and talk him through those times. If it is not something you have heard of or looked into, I would definately check with your local hospice and see if they offer this in your area and if you have coverage. You never know what is going to work for you and I only mention this because your husbands disposition sounds exactly like my father's. Best of luck to you and keep your chin up, get support when you need it and never feel guilty about how you feel. Love is keeping you around and you are entitled to some honest feelings without being judged. You will never be judged by anyone who has dealt with this, I can tell you that much.
You will never be judged by anyone who has dealt with this, I can tell you that much.

I read a little blurb in the newspaper the other day. The writer said she takes her dog to a dog park every morning, where a few of the pets jump around and play together and a few stay away from the pack, not taking part in anything BUT barking and making all the noise.

She wrote, "there is a moral here and I am sure you can find it if you think about it."

Nobody who lives with this disease will judge you. Some well-meaning but clueless might, but those are the onlookers with lots of noise to make.
Dear Linda

I know exactly what you are saying. When I run out to the store I can sometimes pretend that things are okay but they are not! I think it is WONDERFUL that you are going for counseling, especially with having a young daughter to care for, and you speak to your minister and attend prayer meetings! I too go to weekly prayer meeting and of course Sunday service. But.......I cannot speak about what I am feeling or I might never ever ever ever stop crying. So I stuff everything way way down deep inside and every night come to this forum to know I AM NORMAL AND HOW AWFUL THIS DISEASE IS AND HOW MANY PEOPLE ARE JUST LIKE ME AND ARE DYING A LITTLE EACH DAY FOR THEIR PRECIOUS LOVE ONES.

If you can Linda, once school is out, get your daughter involved in fun summer activities so she is not inside so much. She is so young and it must be so hard on her seeing her Dad unhappy.

I will pray for you all.

Thank God we can pour our hearts out to each other and not be judged. A safe haven.

Take care and you too get some breaks and get out when you can and enjoy some away time. We all need to do that if possible.

With love,
The Let Down

Hi all!
I have been away for awhile, we had a huge fundraiser for my husband and the foundation that I have started. Well we had a huge turnout with some really good music and great media coverage. Well I think that I have been so busy with all the hoopla and just dealing with something other than the "ick" So now it is back to the grind of the disease. I guess I am so tired and now the realization of the every day stuff is still here. We got a van donated to us and someone that was a huge fan of my husbands walked up to me and said "What does Freddie need" All I could think of at that time was man, I am so tired of not sleeping at night and boy what a craftmatic bed would do for BOTH of us am so tired of only I could sleep..... So the gentleman gave me a check plus for the bed........It was so nice to see all the love for my husband. Well I have noticed that Freddies eating and swallowing has really decreased and he is looking so thin. We have always said no trach and live with a DNR, well alot of things have been given to us to be able to deal with Freddie having the trach. The problem is the PEOPLE, I don't know if I am going to be able to deal with all of the bells and whistle stuff that along with this procedure.....I am going to try but I am sooooo scared of all the thoughts of that I am responsible for someones life. But someone told me that the bi-pap is almost the same thing, well it is in a way.......IF it rains he freaks out about the machine. He starts freaking that the electricity is going to go out...On the way to the benefit, the generator for the car stopped working and he freaked out.....Me too, I had the wheelchair broken down and in the back of my yukon, I had to start putting it together and he is freakin, which causes me to start panicking and not thinking clearly, so on that note I have to literally pick him up....and carry him...He is 6'3 and I am only 5'3 the weight is not the problem, I bet he only weighs around 95-100 lbs. It is the height that is akward. I hope that this is going to be the right choice. He will also have a peg put in. This is so scary to me, If we don't move soon the window of opportunity will close soon. I do not know if having both of these things being done is RISKY, but one way or the other he is narrowing his chances. So I have decided that if he doesn't make it through these "procedures" He is going to die one way or the other. I have not talked with anyone about the pros and cons of the trach. I know that I am scared and pretty much alone, my husband is adopted and my family does nothing to help. They don't come to visit and pretty much can't understand why I just can't get up and go....That is another issue in itself....Well I am going to pray and I know that the Lord will show me the answer. Once again thanks for always being here:mrgreen:
Hey netty, girl....I been waiting for you to post. I am so sorry I missed that fundraiser! I wanted to go so bad. My brother was supposed to take me, but he had to lay over for the weekend in Dallas or Ft Worth, can't remember which. I wanted to post you a message, but I had computer issues. Didn't have it for a week, just got it back a few days. When it rains it pours. How is Freddie. I wanted to meet him so bad. I still want to meet him. Any chance?

Dear Linda,

I think you have a very hard way to go, and you really need to take care of yourself and your daughter. If your husband does not want to do things then you must go ahead as you can. Perhaps you can plan two things you want to do that you think he might like. Then let him chose, if he rejects both then do it by yourself or with your daughter or someone else. I would definitely set up a dinner date with your daughter once a week or a game night where she is the center of attention. Fifteen is a tough age when things are going well, but this situation, as you know, will really impact her.

Please also get out alone and get out with a friend. Leaving for an hour or two at a time, especially at this point. It will help you and may shock your husband into helping himself. Besides the AlS depression/self pity? is not good for him and please note without offense, if you are supporting his negativity by accepting him as he is.

You do have most of the responsiblity here for your daughter and for yourself and probably for him, but number one is to yourself so you can be there for them.

It has been awhile since your first post. But I just saw it. Please write and say how things are. I hope you have found help and support here. I loved taking care of my mother but I often wonder how I would have managed my Dad if he had died first. God Bless you. Please write again. Sincerely, Peg

Linda, I always say. We as Caregivers have symptoms of ALS to! Keep the Faith. Your husband is rebeling and with a big right to. He really could use an anti-depressant. It would help so much. We are thinking about you. We know too well what ALS will do to a family.

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