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Rhonda J

Member
Joined
Jan 24, 2014
Messages
20
Reason
CALS
Diagnosis
06/2009
Country
US
State
Oh
City
Fairborn
My husband has had this horrible disease for 6 years. He is 57 and I am 50. We have been married 11 years. He is a 25 year Retired Veteran of the Air Force. It came on fast, it took his voice and his walking first...then gradually he has declined to the point of being in a wheelchair 12-14 hours a day.. sitting watching tv... he cant eat, he has a peg tube for about 4 years now.. on 6 cans of Jevity a day. His drooling has gotten so bad, he gets Botox for it. This is going to be all over the place because I cant string 2 sentences together anymore. He has an aide that comes every day for 3 hours... gets him up and bathed and dressed.. gets his day started. I drag myself out of bed, I don't care if I comb my hair or not. I worked all my adult life in Customer Service... and I knew early on I wasn't cut out to be a caretaker. Yet here I am....every single day...changing depends, wiping drool, emptying catheter bags, taking care of the house, bills, animals..etc...on and on... and I just don't know how much longer I can take this.. I am exhausted. I haven't been feeling well.. I went to the Dr. now I am anemic, low Vit. D, they found a lump on my breast...have to have a biopsy.. my depression is really taking over my life...I have been doing this 24/7/365/6...I get no relief.. no time away... between the 2 of us.. 4 useless adult children too busy in their own lives.. his 2 don't call, come around, nothing.. and my 2 only when they "have" to. I feel ashamed that I get angry most days... at him..at myself, at God, at this disease, at the life we were SUPPOSED to have....I keep thinking.. I don't have time to get sick... I don't have time for me.. what if something happened to ME? There is too much to worry about for me to get sick. I think the thing that gets me the most is the lack of communication... he cant talk, he don't WANT to use a communication device.. I get to play charades 24/7...Do you have any idea how HARD it is to read someones mind?!?! And I do it all day.. EVERY DAY...it is EXHAUSTING! This is not fun...I have NO enjoyment.. nothing. I quit my part time job and this is my life and I HATE EVERY MINUTE OF IT! Damn ME! I cant imagine how frustrating it is for him...It is living HELL for me! I love my husband.. PLEASE do not think I don't.. that's not it.. not at all.....another thing that scares me is that he wants to be kept alive on machines for as long as they will do it... and that makes me VERY ANGRY! "HOW DARE HE WANT ME TO CONTINUE THIS HELL?" I hate having his parents down here.. (they are in their 80's).. they get on my nerves.. all his mom talks about is "My poor son... blah blah... you will never know my heartache>>>I want a cure".... it is DEPRESSING! So I convinced my husband that he should donate his body to The U of Cincinnati or Ohio State so that someone may learn from this...his mother had a full blown fit..."HOW DARE YOU SUGGEST SUCH A THING FOR MY SON!?" My family doesn't do the funeral thing... we all donate our bodies.. I have lost my mom, my aunt, my dad, my uncle, my sister.. all donated theirs... I don't like funerals, funeral homes, nothing about it... he wants a full blown Military funeral with white horse pulled hearse and all this and he is asking me to do something I didn't do for my parents or family. I do NOT want to sit in a room and have people judge ME...about "Oh.. she isn't crying enough... oh.. she smiled.. did you see that?" I DONT WANT ANYTHING TO DO WITH IT! So I sent papers to OSU...and I got them back... and I sent copies to his parents...his brothers and sisters and his children... so that when the time comes.. there wont be any mistake. I am dealing with that hell right now..."HOW DARE YOU?" Well.. you all want a cure, don't you? How do you think that happens? They must think they can give a lab rat this horrible disease... I wouldn't wish this on a rat! I am a horrible person....I must go now.. time to change a depends.....if they do find anything on my breast.. or if I get some sort of cancer or something.. I will not do any treatment...I just want God to take me out of this miserable life....oh.. and I do have a Dr. and I am on meds....I just cant do it anymore!
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
Rhonda I hear your pain. You are not going to get any judgement from me, as I know the roller coaster ride that you are on. You have care giver burnout and the only cure for that is rest. If he is a veteran they will pay for full time care so that you can go back to work over and above his pension. I don't have that option as my husband who is an American Vet moved to live with me in Canada. The difficulty for me is that he is ventilated all be it using a sip and puff mouth piece, so the nursing agencies will not send a nurse that is not specially trained to work with ventilators. Thankfully, I am a nurse with critical care training, and have so many good nurse friends that have come in to give me a break once a week for a few hours. I am a care giver, and a homebody so it isn't too terrible of a burden for me. But then I haven't been doing this for 6 years like you, only 3 years and when my body is hurting it is hard to be compassionate, and then I feel guilty. There are days that I wish it would end, but then I immediately regret it because it means he will be gone. My husband has been blessed in that his speech is almost perfect, although he gets weaker by the end of the day.
You need to get away for a few days, and maybe that means respite, if you don't you will be hospitalized for something for sure. I can hear that you have reached your limit. You have been amazingly strong for a very long time, so now you have to be strong enough to take care of yourself so that you can get back into the game of caring for your husband.
Have you told your husband that you will not be able to care for him if he requires machinery, and that he will have to go into facility care? It is not a threat it is just the truth, and he needs to make an informed decision. If he is OK with that, then say that you will be happy to visit him daily, but that you will not be sitting at his side the whole time. I told my husband that I love him dearly, but that I could not be his full time caregiver, once he was on a ventilator via trach as it would mean that I would not be getting the sleep that I would need. He has an amazing attitude but being able to talk is HUGE for him, as he is a talker, but once that is taken away I don't think he will find life quite so enjoyable. The only thing left after that would be his eyes, and he is unable to use his tobi eye gaze as it makes his terribly nauseated, and he would basically be locked in. He didn't like to hear it, and he cried but he could see what I was saying. He decided that he would not continue if he lost his ability to communicate.
It sounds like you do have faith, but are very alone. Do you go to a church? My church family is absolutely amazing, and optimize what God asks us to be. They are there for Tim and me in more ways than I can mention, more than either of our families. You will be in my prayers and I will try and send some strength your way mentally. I am actually quite mental so you should be feeling better quite soon. Lol. God bless, and be nicer to yourself.

Paulette
 

cheerleader

Senior member
Joined
Jul 6, 2013
Messages
977
Reason
Lost a loved one
Diagnosis
08/2012
Country
US
State
Midwest
City
Small town
Rhonda, my heart cries for you. You have every reason to feel all these emotions, and that doesn't make you a bad person. Paulette's advice is so right on. Let him know that you won't be able to care for him on a ventilator and that he will need to be cared for in a facility. You are human, and have reached your limit. As much as I miss my hubby, and wanted him to keep fighting, know that he saved himself and his family years of agony by going when he was ready, before his quality of life was zero. Ignore the family comments- they aren't the ones living this 24/7. Hugs to you, my dear. Donna
 

scaredwifetx

Very helpful member
Forum Supporter
Joined
Jul 25, 2015
Messages
1,573
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
Rhonda, my heart and my eyes are crying for you as I just read this. It really affected me because I am also not cut out for being a caretaker but there is no other choice and we do it out of love. You are not a horrible person at all. I already have a lot of these feelings. Please do not feel guilty. We are the ones who get lost in all of this and sometimes the only understanding you will get is on this forum so RANT all you want. We ALL understand.

You are tired, angry and have let yourself go. You have to take care of yourself. I know that is hard to do. I am early in this disease and have already started on this path. I was always the person at work who was noted as being very put together and never came to work without makeup, my hair perfect, jewelry and dressed wonderfully. Now its hard to do any of that because I just don't seem to care anymore. I know its not right.

I will pray that your biopsy goes well and that you find a way to embrace your life again. I would call the local ALS association because I think there is a circle that can be put together of people that will donate their time to do chores and help you with a lot of things such as shopping, cooking, and coming to sit with him so you can take a break.

Don't give up! You are a very strong person to have made it this far. Reach out for help and take as much help as you can. This is not a burden that only one person can take. YOU MATTER. Please private message me with some contact info and I would love to talk to you and
try to help. Maybe we can find some support and help for you. At least you can talk to someone who understands how you feel.

My heart is heavy for you and you can rest assured that everyone here understands!
 

Broken down Cowboy

Active member
Joined
Apr 26, 2015
Messages
55
Reason
PALS
Diagnosis
12/2014
Country
US
State
MT
City
Miles City
Probably being a person with ALS and not a care giver makes my thoughts less meaningful, but the grief and helplessness I'm seeing in your post draw me in to try and help. I may be a simple man but the way I look at this disease is not complicated. It's slowly turning me into an infant. I need help getting out of bed. I need help onto and off of the john. I've not eaten anything that doesn't slide down my feeding tube. I can barely make intelligible sounding words. Like a baby, I am 100% dependent on my wife for everything. I couldn't begin to tell her outside of typing how humbled I am for all the stress and work she is going through for me. I know she loves me and will never stop doing what ever she can to give me comfort.

I can't hate myself for being helpless. I must graciously accept her super human affection. Every night before I go to sleep she reads me the bible, then afterwards a few poems. It's a beautiful way into slumber. We do it together.

God's plan involved this difficult period of our life. We each have assumed a mind set that I believe helps us both deal with it. I am a baby, Gina Kaye is my Mommy.

May God Bless Us All...................Glenn
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
Paulette ate you aware of the VA Caregiver program? You're already tied into it.

Check out both the Adult Day Health Care and the Respite Care programs. Both can give you some very needed time for yourself.
 

cheerleader

Senior member
Joined
Jul 6, 2013
Messages
977
Reason
Lost a loved one
Diagnosis
08/2012
Country
US
State
Midwest
City
Small town
Glen, your thoughts are NOT less meaningful! You have acknowledged what your wife is doing for you, and to her, that is so affirming. Being a gracious receiver of gifts is a beautiful and special trait. Love your nighttime ritual. And remind yourself, you would lovingly do the same for her if the situation was reversed. Just keep accepting her love by returning that love. That is enough. Hugs to you. Donna
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
Paulette ate you aware of the VA Caregiver program? You're already tied into it.

Check out both the Adult Day Health Care and the Respite Care programs. Both can give you some very needed time for yourself.

Yes I am totally aware of it, but it only applies if he lives in the US. Canada and the US have a reciprocal agreement, but since the US will not pay for Adult Day Health Care for Canadian Vets, then Canada will not pay for it for American Vets, or visa versa, not sure which came first. We also don't qualify for the $250,000 mortgage insurance, even though we did get the $68,000 grant to help build the wheelchair accessible house.
Politics.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Hi Rhonda, so nice to meet you. I get where you are coming from--I have been at this for 8 and a half years now and boy is it tough. I can see how stressed and burnt out you are by the way you write--and I don't mean that in a bad way because girl we have all been there!

I am sending you hugs because so need to take care of your self and have a break. I think the first thing you need to do is get more hours with the caregiver--3/day is not enough to give you a proper break. could you double t hat? with 6 hours a day--many of his needs will be met so you don't have to do them all, and you can do something just for Rhonda, like take an exercise class or yoga class, visit friends, go shopping get your hair done or all of the above.

you might want to think about seeing a therapist too, just to talk thru your emotions. they are all so valid and you need to verbalize them to help you sort them out. maybe your meds should be tweaked too. you sound quite down in the dumps, and you certainly have a reason for that!

Try not to think about the end and what others will say or think about you. what you do is just between you and god, and who are they to judge. if you do your best it doesn't matter what others think. I believe that many cals or caregivers of a spouse with a long term illness are relieved when the end comes, at least in the beginning. what you do for your husband is beyond superhuman--and few understand that (which is why this forum is so great).

I have also told my husband that I will not care for him if he were to choose a trache. It was a tough conversation, but I had to do it . you are right being a caregiver is not for everyone but you have done it and done your best for 6 years. that is amazing. Remember he has a choice, but SO DO YOU. You have made a choice to care for him all these years, but you can also make a choice to not care for him if he gets a trache. he has other family, there are also facilities that he can live in. I suggest you have that conversation with him and then put it aside until the time comes (if it ever does)

Please don't give up on yourself. get that biopsy and get it taken care of . you are only 50, and there is much life ahead of you. it will not always be so hard and brutal on you...you will find happiness again.

hugs and hugs to you sister
 

Atsugi

Legendary member
Forum Supporter
Joined
Jan 11, 2011
Messages
5,199
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Rhonda, you did the right thing by pouring out your feelings here. I wish you had more support at home. And don't feel bad about feeling the way you do: CALS are always walking on a tightrope, trying to balance the demands between giving care to their loved ones yet ensuring good lives for us survivors. Often those goals conflict.

Re-read Barbie's post. I think her advice is spot-on.
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,562
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Rhonda, you'll get no judgements here. Even those of us who have not reached the stage you are at fear it and fear what it will do to us.

Please please please call the social worker assigned to your husband through the VA. Are you using a VA hospital? If so, there is one available. Describe what you've just told us. There IS help available. You can get annual respite days, to include having him hospitalized so that you can have a break. There is also a national caregiver hotline throught the VA. Call them, talk to them, and let them put you in touch with your local caregive support team.

Trust me, the VA does not want to have to put your husband in a hospital or nursing home for the rest of his life, so they will do what they can to make things manageable for you. If that can't be done, then he can be moved to a facility. Seriously, tell them what you've told us.

As for his mother, tell her about your cancer concerns and ask her what advice she has for his care if you need to be hospitalized (or worse). Let her focus on careing for YOU.

As for funerals and being judged. A full blown military funeral is a beautiful tribute, and after what you've been through I might dance behind the hearse and not care a fig what anybody thought. That having been said, donation to science is even better. It's an act of generosity. It sounds like you've got that sewn up, so just close your ears. If the family wants a service they may still be able to get a marker and a memorial of some sort (it's done for people whose bodies don't return home, so why not). Let them do it. You do your thing. I doesn't sound like theya re going to be sticking around and supporting you when he's gone, so so what?

I'm rambling also!

I am blessed with supportive family, both is and mine. I can't begin to imagine going through this without them. Let the VA step up!
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Rhonda I don't know what is worse having no one close by to offer support or having someone who makes you miserable. I would take the time that his mom comes to see your pals to get out of the house. You don't have to stay there and deal with her. Take a break.

My pals is both donating his brain and spinal chord for research and being buried in a national cemetary with the ceremony. Both can be accomplished. It doesn't mean you have to attend the ceremony.

Va has home health services and respite care but the als chapters have respite care also. I would double check your health I surance. Many offer it. I know its more work but it can be done thru a quick email.

Never worry about venting here, we get it. Hugs, Steph
 

Atsugi

Legendary member
Forum Supporter
Joined
Jan 11, 2011
Messages
5,199
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
My PALS donated her brain and brainstem to the Mayo Clinic, and we had an open casket funeral. Call Drexel U.
 

dhp59

New member
Joined
Sep 5, 2015
Messages
3
Reason
CALS
Diagnosis
07/2003
Country
US
State
MA
City
Shrewsbury
Oh Rhonda, I so can relate to you. Caregiving at the level you and I have experienced is flat out crazy. As the disease progresses, the care gets more demanding and everyone has their own level of what they can and can't do. It is next to impossible to do this alone. I am still reading my husbands lips letter by letter. It is brutal. I have just joined the forum. I just started my 13th year as the one and only personal caregiver to my husband ,Peter. My husband was diagnosed 7/2003 at age 48. It progressed fast and by year 4 he was g-tubed, non-speaking, trach and vented. I was 44 when our storm started. I can't remember some of the years that have passed or when I became a nurse, PCA, respiratory therapist. We have 2 sons that were 9 and 10 when ALS entered our lives. I don't think I have the ability to cry anymore. I know if I just sit and think about our lives, I can get overwhelmed with sadness and feeling heartbroken. But I don't go there! I have finally started to take some time back for myself. Although, my second in command caregiver does not do any personal care for Peter, she can take care of his meds, vent watching and PC troubleshoot for him and she is my Cinderella. Loves folding laundry and dishes! This allows me to get away and I use that time to grocery shop, pharmacy runs, but more importantly to work-out in the hopes of getting physically and mentally stronger so that I can battle till the end. You must find a way to take care of your own health! The discussion with his mom and his siblings should be how and who will care for your husband as you figure out your own health challenges and be allowed to get healthy. This is the most important subject right now. You need to be supported so that you can take care of yourself. My husbands siblings are not able to physcially help me with his care. They don't live in the same area of the country. I know if I needed financial support they would jump at the chance to help us. In fact, I burnt out my first handicapped van (2004) and his family bought the replacement. This is the hardest job I will ever have in my lifetime , and I pray that I can stay tough and strong till our last day together. Please get the help you need. Sending you many hugs.
 

Atsugi

Legendary member
Forum Supporter
Joined
Jan 11, 2011
Messages
5,199
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Welcome, DHP. I'm glad to see such encouraging words and experienced advice. Thanks.

Let's hope Rhonda comes back, see our posts, and knows she is respected and loved.

--Mie
 
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