Desparately Overwhelmed

[gagirl]

Hey All. I am still fairly new to this site, but I have been reading all the posts for some time now. My husband was diagnosed in March 2008, but they believe he has had ALS for atleast 5 yrs. now. Since January, his health has gone down hill fast. I am completely overwhelmed with this whole "monster". I don't have any time to adjust to one change before another slaps him. Every day is a new challenge. The Dr. called hospice in last week, now I am overwhelmed with all these strangers in and out of my home. After I get him in the bed at night, I sit in the living room in the dark and just cry. I can't bear the fact that I am losing him. When I finally do go to bed, I lie awake most of the night just praying for each breathe to keep coming. He is completely dependant on me as he is pretty much confined to his wheelchair now and I am still trying to work full time. Thankfully, my boss lets me work from home when I can't get a family member to stay for a couple of hours, but I can't stand to be away from him. I am so consumed with him that I am finding it harder and harder to focus on anything else. How am I going to get through this?

[Icanmanz]

Hi gagirl! So sorry to hear about your husband. May God be with you folks through this sad journey. You are right, Als is a monster. It changed my life completely when my son was dxed. My son's symptoms started in Oct. of 2002. He was dxed on March 29, 2006, and passed June 3, 2007, at a tender age of 38 yrs, 15 days shy of his 39th birthday. It was such a sad journey, it hit me like a train, and I have not been the same. God has given me peace and comfort, but the pain will never go away. I still miss him a lot, the only thing I have left is his pictures, and his daughter (19 yrs old), the spitting image of him. He has a son too, but I have not seen nor heard from him since his burial. It was his mom's decision to move on to a new life, and start all over, and I am okay with that. What's so funny is that they only live about 15 or 20 miles from me. I am okay though, I am not interfering. ga, may God bless you and your husband. The best you can do is live your life to the fullest, pray, pray, pray, and pray! He will not forsake you. Take it one day at a time. May God bless you, and keep us posted. Oh, I am sorry....I meant to ask you, how old is your husband!

Irma

[gagirl]

Hey Irma,
Thank you so much for responding. I hate that anyone has to experience this kind of pain, but it is comforting to know that others have and they are ok. My husband will turn 49 next month and I am just reaching out for any kind of support I can get and wherever I can get it. I have been trying to keep myself together and be strong for him, but right now I am exhausted and alone. My friends and family give us alot of help, but at the end of the day everyone goes home and on with their own lives and mine is just so hard and sad. I just wish I could fix everything and we could go back to the lives we had before. I miss those people that we were. I feel like I fell into someone elses life and I want mine back.

Windy

[crystalkk]

Windy,

I am soooo sorrry for what you are going through. What were they telling you for 5 yrs before they dx him.
It sounds like you have caring and helpful family and friends, and even sounds like your boss is very understanding.
The support you have is very important. You will meet alot of wonderful people on this forum
totally understanding of what you are going through.... someone is always on 24/7 so when you can't sleep you can always come here.

I will keep you and your husband in my prayers.

[jimercat]

Windy,

I'm very sorry about what you are going through. Tim is still so young.

I hope the Hospice people are taking good care of you both.

Yes, others go home and live their lives and have their own little dramas to deal with. But, I can tell you that at the end of the day we will be the stronger for having endured whatever ALS has dished out.

Hang in there and please let us know about how your husband is doing and how you are handling it all.

[anneinma]

I am so sorry for what you are going through. My dear husband and best friend died 3 months ago today. He had been diagnosed 8 months. My heart is broken.

Family members mean well but they really dont understand. It is best if you can develop a relationship with the hospice people so you dont feel like they are strangers. They will be your friend in the end.

I also worked at home as much as possible. I hated being away from my Dh and even asked for a loan from a family member so I could be with my husband.

i know what you are going through. Spend as much time as you can with your husband.

[hopingforthebest]

Dear Windy

I leave my husband 3 full days a week and cry the entire way to work and get through the day with God's strength. My husband is on Hospice also and they have been a great relief for his care issues. They come 7 days a week to bath him etc.
Without my prayer life, I don't think I could get through what we have to get through in a day. The emotional aspect is daunting. It took me about two full months to not mind the people coming and going etc. Now I look forward to their help. I have to let them help us or I will fall over with exhaustion.

It is not easy and I try to take "one day at a time".

God be with you,

Patty

[andyvaughn]

Windy,
I am so sorry ... I know where you are. My husband was diagnosed Feb 20, 2008. He had just turned 51. This is a tough, awful disease, and it is very isolating. I too get very overwhelmed with the role of breadwinner, caregiver, mom, gardener, maid, ... you know the story. One thing I have found helps me tremendously is a constant effort to stay here NOW. When Jim was first diagnosed I was capsized with overwhelming grief, it isn't that the grief is gone now, it is just different. I try, when my mind wanders to what is going to happen when he is gone, to bring it back to NOW. Right this minute my husband is still living, he is here with me. If I spend my time imaging the agony of what it will be like when he does pass, then I lose the moment of now... does that make sence? Try to enjoy those special moments with him, snuggling in bed, watching a movie, whatever. Make time every day to be right there with him, and love him while he is there....
Also I have found that I MUST take care of myself. If I don't rest and eat, I am USELESS. I do have an advantage in that I work from home full time. I know it has to be hard to leave for work, but try to enjoy that as respite, knowing he is being well attended to in your absence. Maybe when you do go into work you could treat yourself to a pedicure at lunch once a month, or a ice cream, or WHATEVER makes you happy. I try to get a massage once a month... I relish that hour of pampering - I have also learned to enjoy naps and books VERY MUCH...Jim tires easily and naps often, so I use that as an excuse to lie beside him and read/nap myself. Who knew naps were so wonderful?
Hang in there with us... there are lots of us riding the same storm... it is very comforting to have friends who are in the thick of the fire with you. I have several other CALS that I talk to on a when I get time, we laugh and cry, share tips, etc.
I wish you peace, and most of all, the ability to live here NOW.
Andrea - wife of Pals Jim

[swi71]

Windy--
The only way I know to make it through is to stay as close to God as you can. He is the only one who has enough strength for all of you to keep on going.
We have been dealing with the "monster" since 2002. Gerald started slowly but then had a real downhill slide from fall of 2005 to spring of 2006. We were put in hospice in Dec 2005. However, he has stabilized and is still with us (unfortunately he can't speak or do anything for himself).
Don't give up hope and treasure what you do have. As Andrea said "Now" living works best.
Prayers,
Sharon

[califsand]

Wendy,

I have been in your position with my father. Having Hospice come in was EXTREMELY overwhelming and I finally had to call the social worker and tell her that it was too many people and too often. There were days that 5 different people came! They mean well and they get very enthusiastic, especially at first, in their effort to get to know a new patient and to let the family know that they have support.

It takes adjustment and for some of us, too many people trekking in and out in the day is hard. For others, the more the merrier! If you can set up a sit down alone with the social worker that could be a great opportunity for you two to establish a routine of help... beyond that, the social worker talks to family members just like you, in the caregiver role, daily and they are usually a great person to vent to. They have resources at their fingertips that can help the caregiver, if they know how much you need it. Our local hospice has several counselors, some religious, some spiritual, others non-denominational, etc. and they are at the disposal of the family prior to losing your loved one.

ALS is overwhelming and when you are the one that is alone with the one you love at night it is a role that nobody can understand unless they are in your shoes. It is heartbreaking, exhausting, terrifying and dehumanizing at times. The depression is heavy! Not only do you have to be strong for them but for everyone else who is sad and looks to you as their strength. Unfortunately, being strong hurts! Personally I take sleeping pills or I wouldn't sleep. Sometimes just half of a dose is enough to help me rest...my dad lives in hospice now but now instead of being afraid of the crashes in the middle of the night when he would inevitably fall while I was sleeping, now I live in fear of the phone. It is not a good way to live life and I can't tell you how to prevent the anxiety because I can't do it myself. However, sleeping pills have helped because being sleep deprived really accentuates the anxiety and depression. Another thing that may help would be to let yourself leave while Hospice sends in shower nurses and go get a massage, something that is for you only... I bet your husband would love it if you did that for yourself after all you do for him.

Just some ideas. For me, the things that help (besides making myself sleep) are to write about it, talk about it and when I am with my Dad I try to make it the most positive as possible.

Take care of yourself and please, come in here when you feel alone. It really helps most of us to know that although we feel like the only ones going through this, in here we are able to see that we are not.

xoxo

Sandy

[gagirl]

Wow!! Thank you all so much for the supportive responses. I need this so much right now.
Crystal - In the past 5-1/2 yrs. we have been to 9 different neurologists. The last 3 said that it looks like ALS, but would not commit to a diagnosis because it was pretty much a death sentence and no one wanted to be the doctor that got it wrong. unfortunately, we could not get any medical help for ALS without a final diagnosis so I loaded him up and took him to the Mayo Clinic in Jacksonville. They diagnosed him in 4 days. They believe that for the past 5 yrs. the disease has just been slowly 'cooking' and since January 2008 it has progessed rapidly.
Cindy - I will call you this afternoon after the hospice nurse leaves.

I created a caring bridge website to post our journey for our friends and family. I encourage everyone to consider this. It is free, and extremely theraputic for me. It also helps to keep everyone up to date on his daily progress and gives them the opportunity to leave encouraging messages which we love to lie in the bed and read each night. I want to share our site so ya'll can see it this too can help or benefit you. www.caringbridge.org/visit/timdaniell

Thank you all again for responding. I know I'm not alone and I hope that I can give the comfort that you all have given me when it's needed.

[Al]

Hi Windy. I'll allow this site with reservations and a warning to anyone going there. By having to register you may be letting your personal information be sold so you may be getting more spam. Forewarned is forearmed.
It may be a perfectly good site but who knows?
AL.

[gagirl]

Thank you Al for allowing my site. I haven't had any problems or noticed any increase in junk emails, but I have an active spam filter that might catch most of them. Just thought it might be helpful to others. Thanks again.

[Al]

No problem. Just trying to look after my forum members.

AL

[gagirl]

We went to the ALS clinic on Friday and the news was not good. Since April 2008 Tim's lung compacity has gone from sitting-up 78% to 44% and his lying down was 38% in April, this trip they couldn't even measure it because he was too weak. The Dr. said if Tim continued to progress at this rate, he didn't believe that we had 6 months left. I was so wishing we would have some good news. It has been nothing but heartbreak and sadness since his diagnosis in March. I wish we could just turn back the clock and go back to the life we had. Or that I could just wrap my arms around him and make it all better. I have been praying for God to give me a peace and to help me change the mood from this awful sadness so that what short time we do have left is happy.

[lostinlouisville]

I am so sorry about everything your going through and my prayers are with you and your husband. If you ever need someone to talk or pray with I think Al can give you my number, I don't really know how that works. About the Caringbridge site. My 3 year old cousin has had one for over a year with his fight with cancer, and I have one for my son, who was adopted at 4 and severely abused who we have now had to admit into a mental hospital. We have not had any trouble with the site and I would recommend it for people who hava a lot of people trying to keep up with progress, it keeps you from repeating yourself over the phone after a dr. visit, etc. My sons name is michaelrichards on the site if anyone wants to send him a word of encouragement. Windy, I do not know what you are going through by experience, but I know how to talk and pray and am no stranger to heart ache, so if I can help i would be glad to.

[crystalkk]

Windy,

I am sooooo sorry for what your family in going through, I will keep you in my prayers.
Please take care of yourself in such a difficult time you need your strentgh.

[CindyM]

Hello Windy- I wish there was a way to lift the sadness- you have a great idea about trying to enjoy what time you have together. Crystal is right that getting a little rest will help. I wish you peace and serenity in this time of great stress. Cindy

[gagirl]

Hello my friends. Tim & I are making peace with what lies ahead for us and trying to get our affairs in order. We want to get it all out of the way so we can just enjoy each other for however long we have. I found a massage therapist that has agreed to come to our home and start giving Tim very light relaxation massages and he is so excited. We used to go get massages together but when he could no longer get up from the table without assistance, they freaked and were scared to touch him anymore. The new therapist is a man and is familiar with neuro-muscular diseases and will bring a massage-chair with him since Tim can't breath lying flat. I plan to get my own rub down when he is through with Tim and I can't wait. It's time to enjoy the simple pleasures just like when we first dated and fell in love.
Thanks for all the support.

[crystalkk]

Windy,

I hope you and Tim really enjoy those massages!!!!

[jimercat]

wow Windy! That sounds really great! Y'all deserve it. Please let us know how things are going...

[swi71]

Hi Windy. I'll allow this site with reservations and a warning to anyone going there. By having to register you may be letting your personal information be sold so you may be getting more spam. Forewarned is forearmed.
It may be a perfectly good site but who knows?
AL.
Al--some friends of ours who lost a baby this winter used Caringbridge extensively to keep all of us updated on his progress. I really haven't noticed any problems with the site. The couple still uses it to let their friends know what is going on after their little son's death.
Sharon

[Al]

As I said it may be a good site but having no personal knowledge I find it better to err on the side of caution. Thanks for sharing your experience.

AL.

[KevinMDA]

Hi Windy.

If you haven't already done so, please register Tim with your local Muscular Dystrophy Association office. They are there to help you.

They might even have a support group that you can go to.

You can find your local office at www.mdausa.org

Good luck, and God bless.

Kevin