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My husband passed a little over 2 weeks ago. He was only age 63, but had a myriad of chronic conditions that affected him both physically and cognitively. The last 10 months, in particular, were ... rough.


His 92-year-old father (FIL) is in "Independent" Living.


I'm still in shock over my husband's death, and miss him horribly. But life, and its necessities, go on.


My FIL has dementia. He can only move far enough to get himself in trouble. His delusions cause him to get into lots and lots of trouble.


My 2 SILs have taken to staying with him overnight, every night. Nobody's pressuring me ... but I feel I need to step up, too.


That said, the whole purpose of placement seems to have been defeated. And, to be candid ... my Inner Monster Brat does NOT want to sign up for more caregiving. My Inner Adult, however, wants me to get a grip. After all, this is not the full-time caregiving I'd been doing.


What would you do?

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Give yourself time to grieve the death of your dh.

You need time to discover what you want in life. I am sure more care giving is not high on your list of priorities right now. This does not mean you are a monster brat. It means you are looking after yourself.

Once you have rediscovered who you are as a single woman, then you can decide who you will share your time with.

A very wise woman told me the old it takes a year to grieve has been replaced by a minimum of a year, but add on one month for every year of your relationship, over 12 years. 30 years=30 months or 2.5 years to find your new normal. It was very true for me.
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JoAnn29 Jul 2020
Interesting Tot and makes sense.
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Confounded, I'm so sorry for your very recent loss!

Your FIL's care is something that his children need to figure out. "Independent Living" is not a suitable level of care for someone with dementia.

He needs a higher level of care and the addition of a geriatric psychiatrist to his team. "Stepping up" is only going to prolong the "propping up" stage.

Please take care of yourself. And no, you're not a brat.
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Thank you, Barb. Although DH'd been ill for quite awhile, some level of improvement was expected. His passing was sudden.

FIL's officially diagnosed with Moderate Cognitive Impairment
(... riiiiiggghhht ... and I just won the Nobel Prize for Rocket Brain Surgery ...).

His facility does have a Memory Care "neighborhood." At the moment both SILs are adamant that any kind of move will kill him outright.

Me? I'm thinking either a move, or a waking nighttime caregiver. Maybe even both. There does seem to be money available. (Hadn't thought about the geriatric psychiatrist. Thanks for the suggestion!)

We lost my MIL on Thanksgiving week, and not only have I just lost a husband, but my SILs lost their only brother, and my FIL just lost his only son. Now FIL, himself, does not appear to be long for this world.

I'm sure none of us are thinking straight at this point.
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notgoodenough Jul 2020
I'm so sorry. It must feel like the very foundation on which you have built your life has been rocked to the core...

Maybe you need to compromise and listen to both your "brat" and your "adult"...maybe, instead of taking on caregiving for your FIL, you do a little caregiving for your SIL's...maybe offer to do some of the little things we all wish someone else would take on for us while we were/are caregivers...for example: "hey, I'm running to the grocery store, why don't you give me your list and I'll get your stuff"... or "do YOU, my SIL, need me to do anything for YOU, like laundry, housecleaning, etc."...That they haven't pressured you into helping with FIL, in my opinion, shows such care about you, probably realizing you've just been to hell and back and they don't want to add pressure. If you were to lend them a hand, you could still be "helping" with FIL without getting sucked back in (a terrible expression, but I hope you know what I mean), and maybe that would assuage your guilt for not "doing more".

I hope you can find the peace and comfort you need and deserve!!
(((hugs)))
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Could your Inner Adult be persuaded to allow you a little more time for recovery, before you make any significant decisions?

And, besides:

If your SILs feel the need to support your FIL overnight every night, he may be in independent living but he is not living independently according to standard criteria for these facilities. His care plan needs to be reconsidered. And, so, in any case - no, I don't think you should prop up a rocky arrangement.
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Confounded, with the level of loss you've all experienced, I kind of surprised any of you is standing upright!

I was certain moving my mom, post stroke and post broken hip and surgical repair was going to kill my mom. She thrived and lived for 4 1/2 years there!

What SILs are doing is unsustainable. Don't go there; the sooner they are forced to come up with a better solution, the better.

My mom's Independent Living facility had a geriatrician and geri-psych who had offices on site. Is anything like that available? Also, know that UTIs in elders sometimes present as behavioral disturbances, so pass that knowledge along.

Be well. (((((Hugs))))))
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I know what a UTI can do! Saw it in a dear friend ... let's just say ... WOW.

FIL "tested negative" but, Barb ... you reminded me that there is more than one test for UTI; sometimes all of them are needed. (My think is on the blink. No way should that have slipped past me.)

Facility has 24/7 MD access, but I don't know about their geri psych situation. Will find a way to check into that. One SIL may become willing and able to do it.

CM ... I don't want to prop up a failing facade. And yes, my Inner Adult may well benefit from going off on a long hike. Still, it feels wrong to go all Tough Love on my SILs at this time.

I'm very fortunate in that, though we've had our moments, we've become family over the decades.

That said ... *measured* support is probably the way to go.
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Tothill Jul 2020
Confounded, you are not .."go all Tough Love on my SILs at this time." You are grieving the death of your husband. It is not rational for anyone to expect you to go from his graveside to your FIL's bedside.

If you need a long hike, go for one.

Please give yourself breathing room. Accept that you need to have some down time to grieve, to settle his estate, the make big decisions for yourself, before you can expend energy on someone else.
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Confounded, are you saying that has been a sudden change in FiL's mental status, i.e., the onset of these delusions was sudden?

I learned this from one of my mom's geriatricians..."A sudden change in mental status is an emergency and should be reported to the doctor immediately".

Delusions are never normal, but when they show up suddenly, the cause should be pursued. If a doctor was informed about delusions, ordered a perfunctory urine dip stick test but went no further, then FIL is getting rotten medical care.

Hospice is another service that might bear looking into.
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Caring for DH had kept me from being hands-on. I'm not clear about how suddenly FIL's delusions took hold. At times, family tried to protect us from too much bad news, because DH and I lived with bad news.

FIL is already in hospice care, but said care seems scanty to me. Again, up 'til now I've been too preoccupied with my own household to be sure.

Will see if I can learn more after sunrise.

Thus far, no one has pressured me to step up ... but it was made clear that my doing so would be welcome.
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Confounded, I'm very sorry for your recent losses. Just chiming in to observe that for nearly the past year you have been consumed with caregiving. Now that it's suddenly gone, it feels "natural" and comfortable to go right back into it. I think your most valuable contribution can be to impart what you've learned to your SILs as they help your FIL, but I think your mind and body need to grieve and rest and you need to reacquaint yourself with yourself and move forward. Helping the helpers may be the best thing for everyone, and they will surely need it. Wishing you all the best for your future!
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Take a deep breath. The last thing you need to do is worry about caring for someone else. FIL has his daughters. They will need to realize Dad needs more care. Like suggested, ask if there are errands you can run. Drop off a casserole. There are things you can do without doing the physical caring. I swore that after caring for my Mom, the only other person I would care for was my DH. It really is too soon to consider caring for another person.

So sorry for your loss.
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I'm sorry about the loss of your husband. It's a recent loss too, so, I'd make sure you take time to grieve, process, etc. No doubt, you are exhausted. Caregiving is a very challenging job. I'd expect time to rest and recover yourself. I'd make sure that what you perceive as a Monster Brat is not common sense telling you that taking on more right now is unreasonable. I'd be careful to listen to reason.

I'm planning resuming hands on caregiving for my LO soon, but, I would not consider it if she was acting out, having delusions and difficult to control. Have they tried medication to help him? If he needs a level of care that requires someone staying all night every night, then, what happens during the day? It sounds like he does need a higher level of care 24/7.
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It occurred to me several years ago that if I attempted to do everything I "really ought to be doing" I wouldn't have enough time or money to do it all. Therefore, I decided I'll just do what's at the intersection of what I WANT to do and what I CAN do, and not feel guilty about not doing anything beyond that or feel I owe anyone an explanation, excuse or apology.

I believed Confounded is absolutely within her rights to take the same approach.
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I'm sorry for the loss of your husband. You are coping with a significant loss and your brain is screaming "no more right now." Take care of yourself and do what you want to do, not what you think you must. My husband died after a 17 month illness back in 2010, and I could barely care for myself for the first couple of years. You cannot manage someone with his level of needs. Your life counts, too.
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Yesterday was the first day I felt almost human since losing my DH. Today? Not so much.

My SILs are overwhelmed with FIL's care. One of them is freaking out. She doesn't pressure me, but her pain does reach me.

I love them all, but now I realize it's too early for me to take on a new "client." Especially one with deep cognitive deficits.

Although the past 10 months with my husband were the most difficult, I've had to "think for two" - at least to some degree - since his first stroke in 2011.

Time to start thinking for one ... and frankly, I no longer know how (if I ever really did).

I will support them as best I can ... but ... I do believe I've joined Team Monster Brat.

Many thanks to you all!
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jacobsonbob Jul 2020
"Team Monster Brat"--I believe that would make a great title for a new series of action movies!
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I am so sorry for your loss.

I am glad to read that you are not signing up to be a caregiver for your FIL. You deserve to have time to deal with your loss and circumstances. May God bless you with grieving mercies and strength during this difficult time.
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I am so sorry for the loss of your husband & MIL. You're still grieving but want to help out W/O wearing yourself out with another caregiving experience so soon is commendable & necessary for your health. Have a family meeting with your SIL & possibly an objective person or Zoom meeting with his doctor about MC & have them explain different courses of action to help FIL to have more appropriate care W/O exhausting the family members. Continue to support your SILs but don't offer direct caregiving with FIL so that you can take the time you need to handle your husbands affairs & your mental health needs. 🙏 Best of luck to you & your family.
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Confounded, I applaud your decision to join Team Monster Brat. The time will certainly come when you can hop on the helper train for your FIL, but not till you are ready and able, with no risk to your own health and well-being. Stick to your guns and heal yourself. You've been earning it for 10 years.
And don't feel guilty!!!
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What would I do? Run for the hills. As fast and far away from care giving as humanly possible. I'd start looking after MYSELF now and leave the care giving to your FILs children; it's their turn now.

Wishing you the best of luck creating YOUR new life after the sad loss of your dear husband. There's plenty more things for you to get involved in now that you have free time. Please do so, without calling yourself ugly names in the process. There's no point in doing such a thing!
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My goodness. If my husband passed away two weeks ago, I would not be thinking like you are thinking. I am guessing you may be in a rebound-type feeling. You are so used to taking care of someone that on some level you don't feel right just sitting there quietly feeling your feelings and thinking your thoughts. Give yourself some time to mull it over, pray if you are a person of prayer, and think about what would your husband want for you to do right now? And also, as has been said, this is NOT independent living. But let the sibs worry about their dad for a bit. Take some time to walk in the park and remember your husband. My husband is 62. I would not want to walk your road right now. Virtual hugs coming your way.
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So sorry for your loss. Take a break from caregiving for a while. You must be burned out.

Did your SILs help you when their brother needed caregiving? I would be prone to doing the occasional casserole run if yes. If no, I would not respond to any direct or indirect guilt trips. Change the subject. They’ll get the hint.

Take your time to grieve your late husband. My heart goes out to you.
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So sorry for your loss. You need time to grieve. You don’t need to do anything right now. Take care of you right now. It is not unusual to grieve for a year or more. You take all the tome you need. Don’t feel guilty. Tell your sister n laws and anybody else that you cannot take care of FIL. They will manage. Talk to a therapist. Take care of you!! It is not up to you to take care of FIL. It is up to you to take care of YOU!
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Well, the situation may be nearing its close. If FIL is not actively dying, he's on the step right before it. He's declined rapidly over the past couple of days.

Yesterday, I did go and relieve my SIL for about an hour. (... I know ...) He needed an eye on him at every moment - by which I mean, can't dare look away at all. He kept trying to get out of bed to see to "house repairs." He's skin and bones - mostly bones. "Meals" are sips of thickened Pedialyte. And yet ... and yet ... he could still tumble out of bed and crawl into trouble.

I know SIL wanted me to stay longer ... but I couldn't. I was glad I went, but I'd reached my limit, and didn't dare go past it.

Today, SIL told me that a hospice nurse will be there 24/7. I don't know if hospice would have assigned one earlier, but it probably should have happened at least 2 weeks ago. Bed alarm is also finally in place.

My SILs and, when they can, visiting nieces, still plan to stay in his IL apartment on a 24/7 rotating basis ... but that is likely to be a very short-term affair, and it is now entirely a matter of choice.

I will support them as I can ... but now I have more head-space to focus on home/estate affairs, and on my own future beyond caregiving (as much as COVID will allow).

Many thanks, again ... to all of you!
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Confounded, I'm glad you got to see FIL's situation for yourself before committing to being part of the rota. I think you are making a wise choice in stepping back.

A hospice nurse with him 24/7? I've never heard of that but if it's available, that's great.
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Confounded Jul 2020
Never heard of 24/7 hospice coverage, either. Only thing I can figure is that this is purely private pay, 'cause no way would his insurance shell out for that.

He's not rich, but he is financially fairly comfortable.
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Was the UTI culture negative?
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Don't you need to start looking for a job? I'm sorry your husband died, but the bills will continue coming in no matter what happens in our life. I took care of my mom for decades--literally decades--and when she died I was devastated so I had to get a job and get on with my life. Because the BILLS kept on coming in.

There is a lot of legal issues with caregiving: POA, estate planning, and meanwhile you are getting older. If you can retire that's very fortunate for you but if you can't--start worrying about your OWN survival. That is what "life goes on" is all about--the BILLS keep on coming in.

Your FIL has his own children...let them take care of it. If anything to avoid legal difficulties against you.
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I feel I am in the same situation. My daddy died last month. My husband's 91 year old aunt has advanced dementia. She has sitters and is at her home but the family rotates sitting with her in the evening. Give yourself time to grieve for your husband. You have been through a lot and you need to somehow recover physically. Be kind to yourself. If you feel the need for a short visit that is one thing. Do not commit to more right now. There also is a lot of paperwork to be done after a death.
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Two weeks since your husband died is no time to take on anything new, especially not more caregiving. A new CG situation would distract you from your own grief, but distraction is not the best way to grieve. You need a lot more time to recover from the trauma of your husband's death and to process your new reality as a widow.
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Don't do it now. You need your time to recoop from your own loss. They have things managed for now and he's in a plcae that provides care. It's not like he is at home and unattended. Just tell them you are still in recovery mode.

10 mos of caregiver mode is quite a bit of time. You may be surprised to find how tired you really are. Wait for a time after you get your own personal life back in order and feeling stronger to offer whatever help you may offer. Maybe 1 night a week or 1 night every other week. Or maybe just to run some errands for him. You could offer off-site relief as in paying bills for him, managing his mail, or other paper work. Just remember what ever you offer, step in slowly. Don't commit to something that may overwhelm.
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disgustedtoo Jul 2020
Your support is spot on, but if you read some additional comments from OP, the 10 months was the "intense" caregiving... she's been doing this on some level, likely increasing over time, since he had a stroke in 2011!

So yes, she SHOULD take time to regroup, not jump into the pool again. Some minor assistance here and there, but primary focus needs to be on getting her feet on the ground again and stabilized!
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I would get him into assisted living.
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I am sorry for your loss. I think you need some time for yourself after all you have been through. If you do anything, keep it light like running an errand once in awhile. You need to take care of yourself. I was a caregiver for my mom 17 years and the last years were intense as she was bedridden in my home for 2 yrs. After she passed on I barely got my footing back when my SIL died. She was caring for my MIL in her home, and this left my husband the only one. I was thrown right back into caregiving. MIL passed a couple of months ago...and after all these years I am now just trying to find who I am and what I want. I am dealing with depression from it all. Now the pandemic has stopped me from moving and doing much of what we had planned. You never know when you will be shut down again, so I believe you should think of you and take care of yourself after being a good caregiver to your husband. Keep any help light if you choose to help.
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