My life feels impossible right now

Melodious bird

 Just reaching out to see if anyone else has a similar situation. So far I have only seen people discussing caregiving for elderly parents and I have much different circumstances.

My husband is 23 years older than I am and he was diagnosed with Alzheimer’s almost 5 years ago. At the time our children were 16 and 17. We have been through so much as a family. I had to raise 2 children while working full time and managing his care. After my kids graduated from high school they took turns staying home with him because he just wasn’t safe to stay home alone.

He was very angry, we have several fist holes in ours walls that I still haven’t fixed. He would jump out of the car at a red light if he didn’t like how my kids were driving. His brother couldn’t even handle him at the gym. I had to leave work frequently to de-escalate the situation. We started him in Risperidone which made things easier with his volatility.

Fast forward to now. My daughter can no longer cope with caring for him while I am at work so my so. Is home with him 45 hours a week while I work. She would like to go to college, but according to the FAFSA I make too much money for her to get assistance and I am expected to pay. I have saved money.... but to pay for my husbands are because he does not qualify for Medicaid so I will need to pay out of pocket and I know my son will not be able to care for him much longer. I feel whiny, but after everything we have been through I feel like we are continuing to be punished for doing the right thing. How can I possibly pay for college and care givers? Doesn’t my child deserve to go to college too? She has a high GPA and excellent SAT score and has been accepted to several colleges.

I do have an appointment coming up in the next few weeks with a lawyer that specializes in elder law.

My husband is my responsibility and I will take care of him until the end, I just want my kids to be able to live their lives. I’m tired of telling them I can’t help them. I feel

Like a terrible mother. Suggestions welcome.

Quilting brings calm

Check the spouse forum - which shows up right under this one on the forums list. 

Have your daughter apply for every scholarship she can find.  Apply to colleges and when she gets accepted, tell the financial aid office the situation.  Let them see if they can offer a financial aid package.  Apply for loans. 

Melodious bird

Thank you. I will try that.

King Boo

I will respond with more information later if I can find it.  A few thoughts:

  Make sure the lawyer is actually and Elder Law Attorney, who has at least 50% of his or her practice in elder law.  Virtually every attorney around here advertises elder law in a very general practice.  Tread carefully.   

  Preferably, a Certified Elder Law Attorney (CELA) which is the highest certification in the field.  www.nelf.org

You are in a difficult situation, but Medicaid will exist for your husband's long term care needs when private pay is no longer possible.  Your kids do not have that option.   Spending down your assets for their education is a legitimate expense that will benefit them for their entire lives.  It may help qualify husband for Medicaid services.  You don't have to be destitute as a couple to qualify.   You are considered the community spouse and will be allowed to keep your primary residence and an amount of money. 

There are many who 'spend down' on things like cars, real estate, hot tubs.  An education is a legitimate and worthwhile expense.

The attorney can advise how to position what money you have for maximum benefit to everyone.

Despite the FAFSA, you can ask for a professional review from the office of admissions about expenses you have that are not reflected on the FAFSA.  If husband lives in memory care, that's tens of thousands of dollars that may bend financial aid in the children's favor.  By the time you are nursing home level care, at over 100 K a year, it will definitely impact. But in home caregiver expenses can also qualify in like kind. 

I think the CSS profile has a section for medical expenses where the FAFSA does not.

I just completed the FAFSA myself a few weeks ago, trying to remember........

Anyway, at this point, extricate the children from being such full time caregivers.  There will be other options to pursue, hopefully the attorney can assist. This disease can go on for a very long time.  It is much more difficult for them to get their education at a later stage in life.  As hard as it is, kids' must come first.  We know what your husband's outcome will be - they have their entire future ahead. 

When college funds are tight, strategizing with some community college, in state tuition, work study, part time paid work for the kids - it can come together.  But not if they are caregivers. 

Off the top of my head, adult day care for him could be a start, they often have sliding fee too.  But,it would be a good idea to examine your placement options as a Plan B, and it is always good to know what is available.  Care needs can emerge that are unexpected and throw a wrench in our plans. 

So much stress for you, I am sorry.  Doing the FAFSA and the college thing alone is stressful in a different way, caregiving on top is a huge responsibility.

Quilting brings calm

Another thought on the FAFSA- when does your daughter turn 24?

Here’s the first question in trying to determine if she has to state your income on the FAFSA:

1. Will you be 24 or older by Jan. 1 of the school year for which you are applying for financial aid? For example, if you plan to start school in August 2021 for the 2021–22 school year, will you be 24 by Jan. 1, 2021 (i.e., were you born before Jan. 1, 1998)?

   I’m guessing she’s just got another year before she turns 24?  

Melodious bird

Thanks all for your helpful comments.

Mint

Please do not feel whiny.  You are anything but whiny.  Seems like you got some good ideas.  Hope things work out for all of you.

windyshores

Definitely talk to the financial aid offices. Put this special circumstance in writing as well, with details and a description of how your kids have been taking care of your husband.

I wonder if divorce could help with medical expenses. I actually did that (different situation, husband had a stroke the damaged executive function and was spending a lot of money).

Scholarships might be available and financial aid might be increased. Another option is for  kids to start at community college for two years then transfer.

It sounds like a hardship for your kids to have been at home with your husband so many hours. I understand the need for you to work of course. Is there a day care program in your area?

Along with the lawyer, maybe also contact your local elder services organization.

JoseyWales

Hi - Just wanted to tell you that you're not the only one going through this. DH was diagnosed 5 1/2 years ago, when DS was just 15. Of course there were a few years with symptoms before an actual diagnosis. DS should be a sophomore in college. He took this last year off because of Covid and to help take care of his dad. He's going back full time in August. I have it on my list of things to-do --- talk to financial aid office because our FAFSA says we don't need help.

I will add that I've spoken to an elder care attny, and in my state anything I give DS for college would be considered a gift and have to be paid back. She said I could probably give small amounts, but actually paying for his college out of our money would not be good. Tuition can't be used for spend-down to qualify for medicaid.

Melodious bird

It’s nice to know I’m not alone, but it just seems so ridiculous. I am up at 5 am every morning because he has COPD as well so I need to do nebulizer, inhalers and pills for him before I leave for work then work all day, ten work all night. My son works all day taking care of him so needs a break by the time I get out of work. I feel like it’s groundhogs day, same thing over and over. No hope. No end in sight. Glad we have good kids that want to help, but it makes me want to help my kids more.... and I can’t It breaks my heart.

Iris L.

Melodious bird wrote:

 I feel like it’s groundhogs day, same thing over and over. 

---

PWDs need Groundhog's Day.  PWDs need routine and consistency.  But it can be hard on the family.  

Iris L.

ButterflyWings

Dear Melodious Bird, 

I am sorry you are going through this and hope the possibilities become more clear.

A few thoughts:

1. Please call the Alz Assoc helpline and ask to speak with a care counselor. Free, and they can help send you information on resources. call our 24/7 Helpline, anytime day or night at 800.272.3900

2. Your daughter may need to apply to schools as an emancipated adult so her income is all that is considered. You'd lose her as a dependent, but her future is more important.

3. Your son - how is his mental health being cared for with this burden (caregiving is HARD, as you know). And for it to be your dad, who you are losing while also being the target of a PWD's behaviors is just a lot. Your daughter too. I agree with those saying put your kids first.

4. Is your DH a veteran? He may be eligible for Aid and Attendance pension then.

5. Our Area Agency on Aging came out to do an assessment and qualified my DH for several hours of home health care based on his AD progression. It is up to 30 hour a week right now, and in our state, family members can be paid as the provider. There is short, thorough training to qualify and then, voila. We do not have Medicaid, only were required to apply and if not approved then services are paid via a different fund. It is a life saver. I would find someone other than my children to do this if I were you based on what you described. But if they are going to be the caregiver, then this is a way to pay them at least. That is only fair and can help them save for college.

6. I want to be gentle with this suggestion, but please do find a way not to only put your LO with dementia and their disease first. It is huge, I know, but it is not the most important thing. I had to realize that my DH has a terminal illness and that I have to survive it since he cannot. And I can't be completely broken or broke (emotionally, physically, psychologically broken, or financially bankrupt when his AD runs its course.) Please don't feel guilty about any changes you can make to prioritize your children more as you are mentioning wanting to.

7. You matter too. I am also a younger wife (DH is 19+ years older). Never, ever, envisioned this future for us. My heart goes out to you. There was another thread in the Spouses/ Partner's forum on this younger spouse dynamic last week. Younger Spouses of Dementia Patients (VD) 10 to 20 years +-. Don't beat yourself up. Just try to do the next, right thing.

I pray you will find the change of mind or heart to free your children from this full-time caregiving and also to say to them, "yes I can help you too". Maybe with some of your savings versus it all going toward your DH care. Especially if they have not received any pay for the caregiving provided so you can work to support the family. Maybe there is a way to compensate them at least, for some of their work too as it is above and beyond for a teen offspring to shoulder this, though I'll bet your family is not the only one. With our kids being older by the time DH's disease showed up, and one being special needs that wasn't our situation.  The certified Elder law feedback will be important. Good luck to you!

windyshores

One of my kids did the bulk of her college after the age of 24. The idea that one of your kids might seem emancipation status is interesting.

Again, I got a divorce to regain control of finances after my husband's stroke (and other reasons too). Does anyone know whether divorce would be helpful in this case?

It seems priorities should be 1) the kids   2) you and 3) your husband. I hate to say it and understand why he is currently the priority.  Is day care a possibility?

Melodious bird

Update: I met with the lawyer, and giving my daughter money for College would be considered a gift. We are looking into other options so she can go to school. I do feel better after meeting with the lawyer, even though that is not the answer we were hoping for, we are getting some necessary paperwork done and will me make feel a little more in control of the situation we are facing. Thanks to all for the tips