How did you manage declining spouse?

[Anonymous]

Not sure where to post this, but thought it might be most relevant here. My DH is cognitively declining. We are still in early stages of diagnosis, but initial tests are leaning towards Parkinson’s or dementia. He’s not entirely aware, so I’m driving his appointments and pushing for tests. For those of you who have been through this, how do you handle becoming a caregiver to your spouse?

I get really angry when I have to keep reminding him to do things or to help around the house (for example to clear his plate at dinner, say hello when someone comes home). Logically, he may not be capable of remembering, but it’s hard to keep that perspective all the time.

We also have very young children who are very busy (preschool to elementary age). I handle the kids, the housework, the cooking. I also work full time. I don’t have the resources to hire an au pair or help. But I’m mentally and physically exhausted. If you have a spouse who is no longer capable of parenting with you, what recommendations do you have to keep perspective and how did you manage all the responsibilities?

[Anonymous]

I am so sorry OP. It will depend on your resources. If you are wealthy, I would hire an aide for 4 hrs a day as soon as possible so your spouse gets used to having someone else in the home. It is helpful to do this before the decline is too acute, because it can seem harder to accept the farther they are into cognitive decline.

Even if your spouse doesn't want them around, use them as a mother's helper or extra set of eyes. This will also help to give you bandwidth to do the things below--especially your therapist and a care navigator.

Get your spouses personal and financial information --login, accounts, health care portal. See a lawyer about durable power of attorney.

Get yourself a therapist. Prioritize this over anything else.

Look at what your job offers as an employee benefit. Eg, caregiving leave, child/elder care backup services, counseling, referrals, financial consulting.

You may want to meet with a care navigator, even if it feels early, just to get a professionals view. I like looking up aging life care association for members since they are independent (not paid thru referrals).

[Anonymous]

Also with young children, it is important that you have a lawyer review or help you get your legal affairs in order, and protect assets as you can legally. This should consider guardianship for your children.

If an aide is too expensive, you might see if there are adult day programs your DH might attend. You might benefit from a caregiver support group for one with cognitive decline.

Also, it maybe a high school student helping out a couple of afternoons a week with the children could provide some relief after work to caring for all.

[Anonymous]

How old is DH and can he still work or is he retired?

[Anonymous]

OP - I just rethought my suggestion to look for a high school student to help out with the children. I wonder if you might look for an older woman(for cash) who might come in even a couple of afternoons 2-5 or 3-6 to help out by preparing a simple dinner (not necessarily cleanin up), keeping the children occupied and by just being there having a second eye on DH. It might give you a chance to get out on a run, go to a gym for an hour or do something else for yourself. It would be more about having an adult in the house so you would have down time. And who would have the life experience to redirect your DH or the children as needed.

[Anonymous]

In this situation if I didn't live near my extended family I might consider going to great lengths to move somewhere near them. It sounds like you are in for a long haul and it will be important and nice to have family available to help out if need be.

[Anonymous]

I feel for you. That sounds like the most difficult situation I could imagine. I would start (even though it might not be the most fun when you're drowning) with going over assets, insurance policies, FMLA, benefits if applicable from the military, reaching out to family members/friends, etc. for help with the kids. Try to figure out what you have to work with financially so you can plan next steps. Can you cut back on activities you do with the kids to the bare essentials that they need for their own mental health? If you haven't already, make sure wills, POAs, and Advanced Medical Directives are in place so you can step in to take over for your DH and in case something happens to you, someone can step in for you.

Just remember that anger is part of the grieving process and you will be doing anticipatory grieving. Plus no one will understand what you are going through. You are going through something deeply traumatic and unfair, and anger will be a part of that.

If he does have cognitive issues, it is tough but lower your expectations to zero. It's not that he won't do something, it's that he can't. Like expecting a 3 year old to be able to read a chapter book. Cognitively they cannot do it. It's scary and frightening, which is where the anger comes from, but they are not the same person they used to be.

[Anonymous]

Anonymous wrote:How old is DH and can he still work or is he retired?

OP here, DH is in his early 40s. I honestly don’t know how long he will be able work. Another stressor is trying to plan to support my family on one income. We are not DCUM wealthy and need dual incomes to get by. I was not expecting these types of health/cognitive issues until much later in life. What is most challenging is trying to juggle parenting with his health issues and care giving.

I appreciate the input so far. Friends and family have been supportive with the kids and offering help. What’s daunting is looking into the future and realizing that this isn’t a phase that will pass. If anything this is only the beginning and it will only get harder as his symptoms and health declines over time.

[Anonymous]

If this were my situation, I would get a live in aupair or nanny to help with the kids. Or I would have my family move in with us or down the street. My parents would help me extensively. It's easier to get help with the kids than it will be to get help with your spouse.

Once he's not able to work, get SSDI. He should be eligible for that.

[Anonymous]

Yes, he should be eligible for SSDI when he can't work, and the children will get a benefit based on that too.

[Anonymous]

Op, I think you should either move closer to your or his family, or have one of them close to you, or even an adult sibling or cousin or somebody. Someone who could help you with kids. If your parents are still living and healthy enough, I move right near them or ask them to move close to you. If this was happening to my adult child's family as a parent I would absolutely move closer to you or invite you in with me.

[Anonymous]

Anonymous wrote:Op, I think you should either move closer to your or his family, or have one of them close to you, or even an adult sibling or cousin or somebody. Someone who could help you with kids. If your parents are still living and healthy enough, I move right near them or ask them to move close to you. If this was happening to my adult child's family as a parent I would absolutely move closer to you or invite you in with me.

This, plus it would be really nice if your or his family lived in a low-cost part of the country. You almost have no choice now but to lean into your career and get whatever help you can for him and the kids.

[Anonymous]

I'm so sorry, OP. No advice, but hugs.

[Anonymous]

It's so daunting. Especially having to wait for the diagnosis and seeing your whole life upending.

I would check benefits at your work and his. Does he get short term disability or long term disability? Some employers also offer supplemental coverage like critical illness, long term disability, or life insurance (some may not need a health assessment). If he can hang on until the fall you could elect during open enrollment (if he can't work you could use FMLA though it would not be paid, better to use short term disability because it might be paid 100%). If he has life insurance, some have an acceleration of benefits rider in case of a serious illness. I'm just looking for ways to preserve income.

I would definitely start a Go Fund Me once you have the diagnosis and know what is happening. This is exactly the situation where they make sense.

[Anonymous]

You need help OP. Are any of your parents (or DH's) alive and capable to help? In general I would never want a grandparent living in our home with small children, but this is the big exception. You need on sight help. Someone who can tend to your children with love as needed, but also your spouse. And to YOU.