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soakland

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My wife has Bulbar ALS, diagnosed since Oct. 2016. Some background prior to her diagnosis is necessary to get context:

My wife, myself, and our now 19 yo daughter moved from RI to FL to care for my 91 year old Dad in July 2013. We moved in with him. He was very demanding and passive-aggressive. He hated when we left the house for any length of time. H would sulk and put pressure on us to stay at home 24/7. My wife would cook daily for him. I just sat here, for the most part...while he paid the bills. My wife was Bipolar and was on disability so that was our income. I quit a FT job in RI to move down here. I did start a cleaning business here, so I worked occasional one or two times a week to earn some extra $$.

Then we had to go bankrupt because the house we sold in RI had a clause that I didn't see...that we would be responsible for the short-sale balance. So we went bankrupt in Mar-Apr 2016.

My wife had been having symptoms of slurred speech which we attributed to her bipolar meds....or GERD. What was to happen next (not even yet related to ALS0 was devastating.

My wife had a bipolar psychosis that lasted 6 mos. She insisted on divorcing me, and even called the police saying I abused her. She intended to fly to move in with a friend in RI...she was stopped in Atlanta airport and was arrested for assault on a police officer. Long story short, she had a psychosis which explained her actions. She was hospitalized in Atlanta, and treated for bipolar psychosis successfully. She was there for 6 weeks. Come to find out what happened: my wife was in denial and went into a psychosis. The hospital positively diagnosed her with Bulbar ALS. At that point I hired an elder care specialist to try to figure out what to do next. Figuring that my wife wanted nothing to do with me, I figured a facility was needed. While in Atlanta, my wife (her speech now almost unreadable) finally got a phone and called me and said she wanted to come home and deal with the ALS. I was a bit skeptical...but I paid $3K for medical transport and brought her home. Caring for a 95 year old father did not afford me the chance to go myself. Although my daughter flew there from RI to visit her while in hospital.

That was in November. We have gone twice to the ALS Clinic and am moving forward with treatment. She is declining but has a great attitude, and our marriage is back to normal (whatever that is).

So here I am...a caregiver for my 95 year old father, and now my wife. Both at the same time. Luckily my father only needs meals and bed making and stuff. But, going into ALS, we have been through the meat grinder. I worry about my mental health. I get angry, and feel no one understands my plight. I am a Lutheran Christian and have strong faith in God. But I am going into caregiving for ALS already burned out by 3 1/2 years of caregiving for my Dad.

So that is my ongoing story. My wife was told she had 6 mos (that was in October), but she may very well have longer. That is how ALS rolls. Her father and uncle both died of ALS, so it is the familial type.

Glad to be a part of this forum. I hope I can learn from all of you.
 

Narrowminded

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Soakland welcome to our world although I'm sorry I need too. You will find this a place of a breath of fresh air. Everyone here understands and is here to help support each other. You will love here.

Hugs,

Sue
 

Narrowminded

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Sorry it was a double post. Not sure why that happened.
 

soonerwife

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So sorry to hear about your wife's dx. You have found a wonderful place for support.
 

Atsugi

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Soakland, welcome. That's a mess. I'm so sorry.

My wife passed quickly. From first symptom to passing was about 10 months. She reached the totally locked-in state, including eyes paralyzed, but was only in that state less than 24 hours. Her final months included a few episodes of painful joints, but all-in-all, her passing was calm, pain-free, fear-free and dignified in our house. I just wanted to let you know that it's possible to get through a year of caregiving for an ALS patient.
 

scaredwifetx

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I am so sorry that you have to be here. I am also sorry that you have had to go thru so much. You sounds like a wonderful son and husband. Anytime, you come here you can expect understanding and support.
 

Jlynn

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So sorry to welcome you here soak land. Sounds like you have a really full plate already. Are you able to get any help at home? VNA and such? This is a great place to vent and learn. I encourage you to read all you can here. It's been a lifesaver for me. Hang in there. Xoxo
 

Nuts

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Welcome, Soakland. What a difficult road you've traveled already; I am so sorry. I was a couple years into caring for my mom when my husband was diagnosed, but I'm fortunate enough to have a sister who came for mom when things became difficult.

There are certainly people here who understand what you are going through--I hope we can help you as much as I have been helped here. We share the good, the bad, the sad, and the joyous here, and it helps.

I am so glad for you that your marraige is back on track. Having loving appreciation from the person you are caring for helps.

Do you get any respite at all? Is there anyone who can step in and give you even a short break?

Becky
 

Lkaibel

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Your challenges have been extreme, and now this. I am so sorry but you can get through this too. Glad you and your wife are back together and know you can come here and find much support.
 

Firefighter58

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ON
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Soakland, it is good to meet you. So sorry to hear your story,
 

soakland

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Thanks to all who has replied, and those who have read my story but haven't replied yet, too. I know I am not the only one. And it is pretty early for my wife, I suppose. She may have more time than any of us think. No one knows for sure, of course. As far as help, I applied for a $500.00 respite grant which was just approved. I just have to supply a little more financial data. I have a home-health aide agency in mind. Since I clean houses, one of my customers just so happens to be on the ALS-recommended HHA list - one of two! So that should help a little to get away for an hour or two.
 

IbisPibis

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CALS
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Soakland,

I'm very sorry for your situation.... but please know you are not entirely alone. I was 25 when I began caregiving for my mom who was diagnosed with ALS. This year I will be turning 30. I certainly don't regret my decision to be her caregiver, but that doesn't mean there aren't days when I'm exhausted from having two full-time jobs.

We all know (too) intimately that none of the people with ALS have chosen to have ALS. They would much rather take care of themselves -- but circumstance has it that they are unable to do so. And it seems to be tremendously important to the typical person with ALS not to be a burden on loved ones. I have found it very important to remind myself of that often.

One of the most difficult things about being an ALS caregiver is that the day you get a break, is the day you lose your loved one forever.

Another difficult thing about being a caregiver is -- like you alluded to in your original post -- that the timeline is somewhat unpredictable. My mom has had "6 months" for at least a year now. Is she going to slip away in her sleep tomorrow night? Or is she going to be around for another 5 years? The unpredictability makes it so difficult to make plans for the future -- in regards both to your own life plans, and plans for her long-term care.

Of course, the plight of the caregiver is nothing in comparison to what the person with ALS goes through. But at the same time, that doesn't mean that you don't have every right to feel everything that you're feeling right now.

My mom and I made a sort of "pact." I told her that I am willing to help her with whatever it is she needs. Butt-wiping? Yes. Nose-picking? Yes. Repositioning at 1 am, 3 am, 5 am? Yes. Not only am I willing to help her, but I WANT her to tell me everything that she needs so that I can make her as comfortable and happy as I can. And I mean it. But with one request: that she automatically forgive me for any grumpiness I may display in the process.

And we made the "pact" both ways -- I automatically forgive her when she gets frustrated or upset.

I think that pact has been very helpful for both of us. That way she knows that when I'm just plain grumpy, it doesn't mean that I wish I didn't have to take care of her... it just means that I'm allowed to not be cheerful all the time.

I don't know what the dynamic of your relationship with your wife is like-- but if it sounds like that's a "pact" that you would both be able to understand and keep, I highly recommend it.

Also, is she on hospice yet? It sounds like she should be eligible. All of the hospices we interviewed had facilities where the patient can go for a few days to give the primary caregiver a break. I think it's important to have a couple of full days off -- not just a few hours off -- every once in a while to stay sane. You should take all the reliable help that you can. If the quantity of your care can go down, the quality will go up. Does she have any siblings that can step in and help too?
 
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