Young couple dealing w/ ALS

[jmlong]

Hi to everyone. My husband I have been married since Oct 2008 and have a 9 month old born May of last year. In June of last year my husband was diagnosed w/ ALS. He’s only 28 years old. He also has Crohn’s disease so this makes his inability to get around very good that much harder. He has progressed w/ the disease much quicker than anticipated. He can’t grip things very well; walking is very hard even w/ a walker. He cannot do stairs and standing can only be tolerated for a short time. I told him when he was diagnosed and I tell him now, I meant it when I said the vows of sickness and in health. But I just feel like I can’t do enough or I’m not prepared enough. We live in duplex w/ stairs and I’m trying to work on getting preapproved for a home loan to move in to a ranch home. But we have no vehicle to transport him around in to get him to and from places. I just sold our second car so that has helped w/ monies somewhat. I’m being told we need to get w/ a probate lawyer to make sure everything financially is taken care of when we are at the end. I have to work full time to pay our bills and daycare so I’m away most of they day. We do have hospice coming in three times a week to help bath and him see a nurse. But I feel like I’m leaving him alone too much and our entire family works (minus a couple in his family). His family is in denial about this and has barely come around. I’m trying to raise our beautiful baby boy who is our joy, but it breaks my heart that my husband can’t interact w/ him. I get frustrated that I’m doing this all on my own w/ our child and with him. But I will not give up. I just feel some days I don’t know how I’m going to do this. How am going to get a van, a home, someone to be with him all the time when he gets even worse? He sleeps in a chair that reclines as he can’t get out of out bed so he wants to spend the money on an adjustable bed we both can sleep in so we can be together again. But I fear spending the money on something we both won’t be able to use very long w/ his disease progression. I don’t ever say to him the word “ die” but I am being realistic about this. I know he won’t be around very long, but I don’t want to ruin his spirit. I’m mad that this happened. This is not how I expected our first years of marriage to be. I did not expect to be learning about strollers and wheelchairs at 29. I know I have the strength to do this. But reality seems to be pushing me down with what he needs and what I need to do but can’t. I don’t mean to sound ungrateful, or mean… I just feel helpless. How am I going to do this? Is there anyone out there w/ a similar predicament? Advice on what to do?

 

[Danijela]

So sorry about your situation. You are indeed very young. I am 38, my partner is 43 and we have 1 year old son. I can relate to having to raise a child on your own and how hurtful is for a partner not to be able to fully participate. My partner was diagnosed over two years ago, and we decided to have a child post diagnosis.

We try to make the best of it, and some days I am at peace with our situation, other days I feel thorn (why us?). What hurts me a lot is watching a process of my son getting stronger (now walking) while my partner is getting weaker (barely walking).

I am happy to chat.

Take care, Dani

 

[Miss]

I am so sorry about your husband. I cannot imagine how hard this is for you and your husband. The amazing thing about this forum is that there is always someone out there in nearly the same situation. Dani and Amber (AmberandBruce) are great resources. Take care and know that we are all here for support. Some of what you will encounter is universal with this disease.

 

[stephie]

My husband is much older than yours (diagnosed at 39), but we received advice from a lawyer early on that we considered following. He advised us to get a divorce. That way, my husband's only income would have been Social Security and he would have been eligible for Medicaid, which would have covered home health care. It would also have protected any property or assets that belonged to me in the divorce settlement. We talked about divorcing (in name only, of course) and decided against it, but I wanted to throw it out there as a financial possibility. I am very sorry that you are dealing with all of this at such a young age.

 

[kelly]

Wow....Stephie...that was interesting advice. Unbelievable that our families dealing with ALS have to even go down that path. JMLONG...so sorry to hear about your hubby progressing so quickly..he is so young. There is just no making sense of it all. Our children were 2 and 4 when my hubby was diagnosed at age 39. It is so heartwrenching...the whole disease. We just try to create as much normalcy in a not so normal situation. It is a relief to get some help from hospice. Do the social workers there have any suggestions regarding in home help? Sounds like his family needs to step out of the denial closet and step up with some help. You will find that your beautiful son is what is going to pull you through this journey! Stay strong..and keep reaching out for support.

 

[abbas child]

Dear jmlong,

I am so sorry you have this much happening, and with a fast progression. I wondered if you've contacted your local ALSA and MDA in order to get any help from them... if that's even possible while using hospice. I realize your husband isn't ready yet mentally, but he needs to go the loaned hospital bed route. An innerspring mattress comes with some of them (mine) and is actually comfortable. Also, I urge you to look into handicap van rentals and forget buying one. It's a huge expenditure and may be used very little.

Regarding his needs, can he possibly be toileted downstairs, using a bedside commode? I know that many men use a condom catheter, so the trips to the bathroom are limited greatly. What is available on your lower level... kitchen and living room only? Are there ways to make privacy for that floor?

I realize my suggestions are stark, but in reading your post, it seems you need to be extremely pragmatic. I hope he will soon be able to think in terms that are very realistic so that you can have conversations that produce wise decisions. Again, my heart goes out to you, and as Kelly said, his family needs to end the denial and help you...but you have no control over them. Please keep posting, whether to rant or to ask for ideas, or simply to have the ear of others. I'm lifting you up in prayer.
Ann

 

[jmlong]

Thanks so much for the support everyone! I know that Jerome (my husband) is in need of more support than I, but it's nice to be heard and listened too from the caregivers point of view.

I am going to try and talk him in to a hospital bed, i just hate to take away and idea from him of what he wants so to speak. He's lost so much independence this past 9 months that i feel like me saying no to a bed he wants is taking away from him too.

He had an appt Friday in looking in to getting a colostomy bag and that went well. Only downfall is they want to do another colonoscopy before doing the surgey. He's just ready to be done with trying to get to the bathroom or the commode.

Regarding the van, our local chapter has emailed me some great things to look in to, i just need to set aside some time to call. I know transportation services are avaliable for dr's appts etc, but i want him to be able to go to family events on my side. He wasn't able to go this past weekend to two, as we have no way to get him down stairs and no vehicle to transport him in. I know vans are expensive, but i think i would use it more especially for him to get out and this summer watch Memphis (our son)walk in the grass for the first time. You know?

I was told we should look in to a probate lawyers as the one policy is have for him for life insurance, i was told his family could be eligible for half of it and anything else he has. He doesn't have any other life insurance from what i know of and nothing really saves etc. I just want to make sure that the little policy we do have does get out to good use once needed. I want our son to have something from his dad so to speak. Plus i want to make sure in writing that my husbands wishes are carried out with out argument from his family.

Anywho...thanks for listening and letting me vent.

 

[abbas child]

It sounds like you've made a lot of headway, while trying to keep Jerome's wishes in view. Very best wishes in getting these things accomplished!

 

[Katie C]

Don't ever sell yourself short as far as how hard this disease is on family. Much of the literature describes it as a family disease!

No idea how the laws in Missouri work but I'm really curious why someone would say your in-laws have any claim to your husband's life insurance if you are the named beneficiary! But yes, one of the very first things we did was meet with our estate attorney (we are blessed that he is a family friend!) He made sure everything was in place: wills, trust, power of attorney, health care directives, etc. I then carried that health care POA in my purse at all times so that there was never an issue about doctors discussing treatment, diagnosis, etc with me.

 

[jmaycavagnol]

I am so very sorry to hear about your husband's diagnosis. My advice is to meet with a lawyer to ensure that his assets are passed down according to his wishes and you can avoid probate court. Also, the lawyer can advise you on medicaid (protection of spouse assets) and also on SS benefits for your husband and your son. The lawyer will also assist with all your medical driectives and Power of Attorneys.

If you do not know of a lawyer in your area; reach out to your local ALS chapter for a referral.

All the logistical things aside, it is heartbreaking to hear about ALS effecting such young man and his family. You are in my thoughts and prayers.

 

[thistlegal]

I am so sorry to hear that another young member has joined, but you will be glad for all the advice and support YOU will receive here. This is where I am able to keep my sanity, and find out what comes next.

My spouce is also 29 yrs old and has the rapidly progressing form of familial ALS. Our health care and support are different up here in Ontario, so I'm not sure how much help I can be in this area. We have a loaner hospital bed from the ALS Society. Please try to find one of these first before you spend money on one of your own. We have turned the main floor of our home into a mini hospital room for Danny. He uses a urinal( from the hospital) and a wheeled comode. We are renting a Hoyer lift for our transfers, as everyone was frowning on me physically moving him.Make sure you talk to a lawyer about getting all your finances in order. I know it's hard to think about at 29, but you and your son need to be protected.

I'm here and willing to chat about anything and everything. Please use all the resorces that are here for you!

Sharon

 

[Pat Paine]

I am glad you found this forum,we understand what you and your family are living through.
Do you have a social worker thru Hospice? AlS diagnosed provides for early Medicare, which would help with
equipment and disability payments-SSDI. The MDA also helps with equipment and services for ALS
patients. Praying for you and your husband.
blessings, Pat