Losing myself

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Hoosier

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Joined
May 14, 2016
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13
Reason
CALS
Country
US
State
Indiana
City
Greenfield
Forgive me if this sounds self-centered, but I feel as if I am slowly losing myself. PALS was diagnosed 9.5 years ago and at that time we thought a 10 year survival would be a blessing. Now I am not so sure. I am so tired of this disease dictating our lives and so tired of feeling guilty about that.
 
Please don't feel guilty. 9.5 years as a caregiver. Wow.

Last week we traveled to DC to advocate on Capital Hill for support for ALS. I asked my husband to remove his hearing aids so that he couldn't hear me, and one of the things I said was that one of the cruelest ironies of ALS so that we pray for a slow progression, but if our wishes are granted and something else doesn't kill our PALS first, they eventually face a future where we have to make decision for them that no spouse or family member should ever have to make. I didn't even touch on the years in between.

I face the days with joy when the man I married is with me. Some days, he's not quite the same, and during those days I fight back thoughts about the horrors that this disease can visit on us.

I don't know if our recovery time is related to length of this "journey", but I do understand the fear of losing myself.

My "respite breaks" are good for me, but are they enough after 9 years????

My heart goes out to you. I hope that someone is giving you time for yourself.

Becky
Queen of Everything (in my ever smaller world)
 
Hoosier let me say that I totally understand you. My husband was also diagnosed 9 years ago. Not sure how long you spent looking for an answer to what was going on before the dx, but for us it was 2.5 years. My husband has been bed bound and on a vent for almost 6 of those years. I totally get "losing" yourself. I feel the same way. At the time we vented, we felt that was a best choice and now I don't know either if that was right. Other than his ALS, he's healthy, not other issues. He is also what I would call young at just 53. We spent our 40's dealing with this disease and what should have been years getting ready to be empty nesters, going on some great vacations wasn't. I personally see no end in sight and feeling lost is a big part of it. I do get times of respite, not many and not often.

Right now we are dealing with him not sleeping through the night. Due to our age, I still have to work, so being up day and night is very tough. I do have nurses during the day M-F so I can work. Fortunately our insurance pays for that. However, I now need help at night. I'm contemplating switching my schedule so I can work while I watch him at night and then sleep during the day while the nurses are here. My only hang up is the weekends.

We can't feel guilty. This disease stinks to put it mildly. It isn't only the PALS who suffers, this disease affects the entire family. And I know, in the beginning we wanted to be an outlier, however we didn't realize the full impact of what that meant. That was part of the whole vent choice as well. I think if we had fully known the impact we may have chosen differently.

Hang in there and vent here. I've only been here a very short time, but there are many very loving and helpful people here who support each other.

Sue
 
Please don't feel guilty. I don't have much experience as an ALS caregiver yet but my husband went on his second year long tour in Iraq in 2006, in that time he hit six roadside bombs, was chlorine gassed and his best friend and room mate in Iraq was sacrificed himself to protect his men from a suicide bomber. My husband came home with a traumatic brain injury, spinal injuries and severe PTSD, another man came home in my husbands body....there were so many times I thought it would have been easier on everyone if he had died over there....While it's not the same as ALS it is similar in the fact that your loved one just isn't the same person anymore, the dynamics cvs of the relationship change and it's so very hard and you lose yourself in it. The hopes and dreams you once had are gone but you don't have time to grieve for them because you are caregiving.....what you are feeling is so very normal,it's just that not many people are brave enough to openly say that they feel that way for fear of judgement
 
What a great conversation about being a long-term caregiver. My PALS is 52 and I am 49. He talks about wanting to go the whole distance including being on a vent. I don't know if I have it in me...it is one thing to take care of someone for 3 to 5 years and quite another to look at a much longer span of time providing complete care for a loved one. I look at all that my husband will lose over the course of this disease, seems like I shouldn't be complaining about my having to give up things that bring joy to my life such as time to exercise, my horses, time with friends. But I wonder who will I be without those things? I already have issues with major depression (that has been beautifully controlled with meds and therapy) and am concerned that over time I will slide back into the abyss. Really, there is only so much a medication can do.... I know he might change his mind several times as the disease progresses. I can't tell him how I concerned I am about the long term care because then if he chooses not to vent I will feel like I caused his life to end prematurely......that I killed him. I know in my head ALS is killing him, but emotionally it will feel like me. It feels so overwhelming. When I feel like this I know I need to practice mindfulness and focus on the NOW instead of down the road. Thank you for bringing up such a difficult topic.
 
I have had exactly the same feelings and really appreciate all of you who posted here.

My husband is in year 10 now. We were fortunate in that he progressed very slowly for many years but after a long 10 week hospitalization last summer due to severe head trauma, he progressed very rapidly. I have completely lost myself. I do not feel like a wife or partner but rather a full time 24/7 caregiver. My daughter, who is the only family living in the same state, has not handled her father's diagnosis well. The emotional and physical toll on her has been great and she is trying to cope by staying physically away. She calls many times a day but we are seeing her less and less. So I am on my own.

My husband seems to want to go the ventilator route when it becomes necessary. Now he is using the Trilogy on BiPap mode via a trach. I honestly don't know if I can continue devoting 100% of myself to caring for him for how many more years? I feel ashamed to even express this thought. I know there are so many who would give anything to have their PALS live as long as mine has. I do not feel that I have the right to influence his decision of whether to vent or not, because I would basically be telling him that I want him to die.

We have not had a vacation in 4 years. The last vacation we rented a house in Florida for a week and on the last evening my husband fell flat on his face, suffering a concussion and multiple facial bone fractures. I was all alone and petrified. We both were so traumatized by that event that we were too fearful to travel since then. Now, it would be too difficult to travel.

Sharon
 
Thanks for all of the posts here. My husband has a slow progressing variant of ALS, so I am dealing with the same thoughts about spending a long time as caregiver. I'm not a caregiver now, but have already given up things that I enjoy - like traveling which he never did with me - to be here for him and am wondering if I should have. I have no one who will help me; his sister is in town but will not be hands on help, and my family lives 2000 miles away. I've only been in this 6 months and am already feeling exhausted much of the time from the emotional trauma. I've had old friends distance themselves from us.

I don't know what my husband will decide about a vent when the time comes, but it scares me too. I understand it is a 24/7 commitment from the caregiver. Since I'm flying solo here I don't know how I will cope. Doubtless I will need to hire help, which will probably eat up our retirement savings but so be it. I've been trying not to think too far ahead but it is so hard.

V
 
V

I am new to this as well but wouldn't insurance cover at least a part time in home health aid?
 
Im relieved to see all of this. I have only been at this 3 years but feel like I have lost my life as well. I am bound to this house almost full time on the weekends because I only have care givers on the weekdays so that I can work. Pals family helps quite a bit, when I need to travel for work, but its just the "trapped" feeling. I know he has it much worse, but his disease traps both Pals and Cals. I pray for all of us here everyday. I just wanted to chime in because I wanted hoosier to know its something we all feel and think about.
 
I would like to add something, I'm seeing a lot of people venting but then following it up with " I know my PALS has it much worse" ....while this is true it also doesn't diminish the toll that it is taking on you, what you are up against. I'm not one of those people who appreciates it when someone says it could be worse. Yes gratitude that it isn't worse is nice but to me it feels invalidating when people say that. Yes there are other people that have it worse, there always will be but that knowledge doesn't necessarily make your situation any easier. You are allowed to feel what you feel and you should be allowed to feel it without feeling guilty that you are being ungrateful. Go easy on yourselves and just because someone else has it worse doesn't mean that you aren't dealing with a hell of a lot. Guilt shouldn't be added to your load as well.
 
Don't any of you CALS ever feel the least bit quilty. You are wonderful, kind, and loving. You are sacrificing so much to be there for your loved one's. Your PALS isn't the only one hurting from this cruel monster. It hurts all the family and friends involved with it. Being worn out and fed up with this damn disease is nothing to be ashamed about or guilty about. It truly sucks for all involved. I wasn't my dad's caretaker at all but I hate what this damn monster did to my family. We couldn't get proper care for my dad here in my hometown. My dad had to move thousand of miles away to get proper care. He had to leave behind three of his six grandkids who he had seen almost everyday of their lives. He had to leave his hometown where he had lived for over 75 plus years. Before, the ALS he took care of my mother who had stage IV colon cancer for 5 years. You can't just run off and leave your PALS to take a luxury vacation. You have to face this monster day after day with them. It's relentless. You sacrifice and sacrifice. It's horribly cruel. But, don't ever feel gulity. Don't let this monster put that on you too. Just because you are tired too the bone and sick of this monster also doesn't mean that you love your PALS any less either. You love them with all your heart. So, any of you who want to vent of here go ahead. Your PALS are blessed to have you. I pray for strength for all of you everyday. Hugs to you all, Kim
 
The first thing I will say is that the vent must be a joint decision - the PALS and the CALS together. This is a huge life-changer for BOTH.

It needs to be discussed early, even though minds may be changed.

I can't contribute a lot to this discussion as my Chris was rapid progression and we do not have the option to vent in Australia. I truly believe that is a blessing.

Before I was aware that it is not an option here my Chris began to say he was going to have a vent and live for more than 20 years and be the longest living PALS on earth.

This is a very honest admission here - that was the day a screaming started inside my head. I could not imagine caring for him in the state he would deteriorate to for that kind of period of time. I could not understand why anyone would want to live that long if they were bed bound and barely able to communicate. And honestly I could not imagine having to give up my life.

Yes Jenny you can get help. But a vent is 24/7 someone within ear shot, and if you talk living for 10 years or more, it is a total commitment by the CALS. Some people may be very happy to do this, and all power to them. But you have every right to examine your own life and say - would I be prepared to devote my entire life to this?

If not, I suggest you make all conversations about vents include conversations about living in a facility. There is no reason a PALS can choose to vent and 'make' you care for them for an indefinite period. There are many choices, and all should be explored together and the needs of both of you taken into account.

Please read back on past CALS threads, eg Santa Jo.
 
Our decision to vent was made together. However at that time I did not find this forum. The only one I was able to find was the alstdi. That was PALS posting for the most part and several had vented very successfully and it didn't seem like much of a deal. I would tell DH about it as he wasn't inclined to read. We were definitely not prepared for this to last as long as it has. I think we both thought this would help but not for this amount of time. Also he was still up and around in his power chair. I don't think either of us imagined we would be where we were today. Totally dependent on the vent and feeding tube with him unable to move at all. Since hindsight is 20/20 I probably would choose differently if I had to do it again. However it is a very individual decision.

Tillie - the facility option here in the states is dicey at best. First it is extremely expensive unless you are destitute. Any retirement savings have to be spent etc. the other issue is finding a facility that is used to not only vents but also ALS. My DH would have no way to alert the staff to any need as he could not press a bell for help. He would be at their mercy checking on him. Most facilities here are not that well staffed.

All that said no one here should feel guilty for any decision they make. There are no "right" answers, just choices that each have repercussions of one sort or another.

Stay strong everyone

Sue
 
Of course you are losing yourself. Fulltime caregiver,cook,cleaner,laundress, etc makes for an exhausting day with nothing left for you. Dont feel guilty, try to find a way for a break.

My husband was considering the trache but he had very little use of his hands. Someone would need to be with him basically 24/7. I wasnt sleeping, working fulltime, raising a special needs child....I told my husband I couldnt commit to taking caee of a trache. There were days I was so exhausted and emotionally raw, I dont know how I could have made it with one more task. I would urge you to learn about traches, pass the info on to your pals, and make an informed decision once you have all the information.
 
You all have no idea how much you helped me by sharing these fears and concerns. I attended a few caregiver support group meetings and no one except me expressed any negative feelings. Perhaps it is the anonymity of an online support group, but whatever it is, I appreciate being able to voice my true feelings, as ugly as they make me feel. I know there are lessons for me in all this, but it doesn't make it any easier.
Sometimes, it is very hard to be loving, especially when my efforts to be loving go unacknowledged. I have called him the princess and the pea when his demands for moving a leg over one inch seem unreasonable.
I know he tries to be cooperative, but when his communication consists of only requests, it gets pretty lonely.
I wish I knew something positive to say to those of you whose PALS chose a vent. Affected, that was wise advice that the decision needs to be a joint decision.
Again, thank you for the honest sharing.
 
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