After Caregiving ... More Caregiving?

Thank you, Barb!

The last I'd heard, they'd adjusted his meds so that he was comfortable and peaceful. Hope he stayed that way until the end.

Before his passing, I asked SIL about UTI. She said the care team had discussed it, but ruled it out. Not sure what that meant as far as testing goes.

UPDATE:

FIL passed away last night. My younger SIL was there, as was his 24/7 hospice nurse.

Many thanks to you all for helping me get through this time!

I think after what you have gone through, you should NOT step up. Offer to help to find a place to put him and help in other ways, perhaps with handling his paperwork, paying bills, etc. but do NOT GET INVOLVED. You have a limit and you are at that limit. And they should understand where you are coming from if you offer to support them in other ways.

Your husband passed two weeks ago. That is NO time

Let yourself grieve before thinking about anything else.

Right now and for the foreseeable future you have the right to just grieve.

You need time to process the loss of your husband. Since he had a myriad of health problems, I am assuming that the last few years were a challenge, and you need time to rest and focus on your well being. Your father-in-law has two daughters who are stepping in to help. My parents lived to be 89 and 90. I was the only family member who could provide care for them. Without going into details, their last few years presented many challenging crises, mainly concerning dad. When he unexpectedly died (I was there at his passing), it felt overwhelming. A mere three weeks after his funeral, mom, who had been living fairly independently, fell and ended up in hospital. Three weeks. That hospitalization was the beginning of a year of steady loss of her health and independence and which led to her passing. I had no choice but to help her in any way I could. I had to put the loss of dad on hold. There's only so much one can handle at any given time, but when you are the only one, you do what you can do. However, I was in some ways traumatized and exhausted and frankly, looking back, feel that I wasn't at my best in advocating for my mom. I did my best, but it was overwhelming. Jumping in right after your husband's death will not be good for you and may not be good for your FIL either. My advice to you is to protect your own health, stay more distanced concerning your FIL so that at a later date, you can be of support to your SILs. After a break, you can better know what you're able to do. If your SILs helped you and your husband in a significant way, you can figure out what feels right in how you provide emotional/physical help to them. Hospice organizations offer grief counseling. It would be a great idea to attend one or two sessions; you could even bring up your question to them. You'd be surprised how many people find themselves in your position and you might get some professional advice as well as some suggestions from other participants that will prove valuable. My sympathy to you on the loss of your husband.

My husband has been gone just over fours years now. I was totally unprepared for the Alzheimer's which took him in 6 years. After all, I had all the medical problems and he was okay. I missed him terribly in the sense that I wanted to say something to him, have him go with me to a local park, store for groceries, and the such. Day by day I went through living and things seemed to improve slowly. Each wedding anniversary day, It was rough for me. We had made 52 years together. I never lived on my own. Back in time I went from living with parents, getting married one morning, and living with my husband for the 52. Some days I was angry that he was gone, but those days came fewer and fewer. I think you are right that you need more time, A couple of weeks is not really enough to go through the whole process. Helping by providing meals sounds like a good idea. It shows you care. Take are of yourself with this pandemic and talk to friends, You will carry him in your heart always.

You are in the middle of the grieving process for your dear husband. You have done enough for now. Don’t let your compassionate nature obligate you again so soon after a loss. It’s not as if your FIL has no one at all. Let someone else have a go. That’s my 2 cents.

Having been in a similar situation, I would say no. You are probably already burned out. You need to take some time to take care of you. We caregivers want to help everyone at the expense of our own health. Take a break. Grieve. Recover. Live for yourself for a while. Then, if you still want to “help”, do it in your terms. And don’t feel guilty. Your husband just passed. Anyone should understand that. You don’t have an obligation to your FIL. You took care of your husband. If you don’t start taking care of “you”, you’re not going to be any good to anyone else if you are burnt out. It is not selfish, either. He has family that can care for him.

I send you condolences on the loss of your husband. Imho, you do need to grieve the loss of your spouse and it is not within your realm of duties to provide care for your FIL. You won't possess the physical wherewithal for the care of one more person. Please take care of yourself, else you drop over and faint/become ill.

It seems like they already have help. Unsure if they asked you, or if you are just feeling guilty in not helping. In my opinion, you've done your "bit" and need some rest from caregiving. I would not jump into this boat again, as you have to take care of yourself right now. Usually caregivers die before the recipients. I would give myself a break and if they ask and you want to after a little break, I would. They might need help as well and need your expertise.
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Please also give your inner Monster brat a big hug. She needs it badly.

I'm putting the shoe on another foot. If I had a grieving family member who had just been widowed, would I ask them to step in and do care giving for anyone.

Of course not. That would be cruel.

In fact, I would say that that person will need care for a long time. And I would be right about that. God bless.

I have no idea what I would do. I think what I'm reading from others about caring for you and your own grief is really smart. My instinct is that I might "rebound" from one tragic loss into more care giving to escape working through my own feelings, and then have a nervous breakdown. At the same time, the new person I am caring for is not the one I lost yet I may confuse the two and likely am too much in grief to objectively appreciate the new patient as they are.

I know I take a long time to heal. One day you might even remarry. Or when covid is over you could go away pn a vacation. If you step in now that all might not be possible.

I'm Catholic, so I would talk to a priest and get into the grief support at my church and probably psychological counseling to help me work through it all.

Oh, I forgot, I would also cry. Alot.

Please allow yourself to just be human and feel. To cry, to be angry, to be lonely, to be relieved . I can't process those emotions as a caregiver, and I don't do much.

If they approach you for help, I give you permission to say "No, I now need a caregiver for myself."

God bless you. You will be fine. It will take time.

Dear Confounded, I am very sorry for your loss. 63 is very young.
I vote for taking care of yourself right now. Allow yourself the time to grieve the loss of your husband. I'm sure the SIL's have things under control or will figure things out. I'm sure they also more than understand your need to grieve.
Don't isolate yourself. Seek grief counseling. Practice self-care.

After only two or three weeks, you are still in shock. I can't believe that all of your legal stuff is taken care of either. You are going to have hard days. You need to focus on taking care of you.

My vote is along the lines of notgoodenough. If you feel up to helping, help the sisters. It seems to me from what you said, he needs more care, hard for children to process sometimes. So, my vote is don't keep bailing out a sinking boat. He needs to move to someplace where he can get more care.

You need a grief recovery group. Hospice covers this for up to a year. The Hospital also is interested in your recovery. With out adjusting to your loss you will become a patient for your psychological needs. It is obvious in reading your narative...you need help.

I'm so sorry for your loss. I don't even know what to say. These are hard times for you and the whole family. My gut level inclination about your FIL is that it sounds like something has changed and that continuing evaluation is important (easier said than done, I know.) It could be there is some infection or chemical imbalance or vascular injury or_____ that has kicked in, or that some med is not working right, or it could be that he is subconsciously moving himself closer to the end of his earthly pilgrimage. Either way, considering your own recent loss, if you want to be present and helpful, realistically, maybe your involvement may need to be sporadic and _not_ heavily scheduled, both in length of watches, and in prior scheduling of them. You have emotional processing of your own, and there are inevitable, unavoidable tasks (paperwork, etc.) for any surviving spouse, and those things take chunks of time and are unpredictable. To me, it does sound like your FIL has reached a point where some new living arrangement is almost unavoidable. This could happen through honest planning, or it could happen in the wake of some event such as a fall. I'm afraid other family members should carry the ball on this decision right now. As a recently bereaved widow, it is better to avoid monumental decisions of any sort if possible. It is just so hard to see all the angles and to think clearly. Sending love to you and your family at this difficult period...

I am so very sorry for your loss. Caregiving for parents is unrelenting. I can't imagine what caregiving for a spouse must be like and would expect you to be exhausted, numb, disheartened, grief-stricken, and perhaps even a bit relieved that your husband is no longer suffering.
I can tell you, though, that taking care of our father for three years before he passed from COPD and moving directly into taking care of mom with Alzheimer's for the next seven years changed my brother and me in ways we didn't anticipate.
Year 1 with mom was trial and error until we finally realized that she could not be left alone. She was never alone at night from the start. Years 2 - 6 my brother and I alternated mornings, evenings, and weekend days and took her to Adult Daycare during the week. Year 7 she needed to be at home as her condition was quite advanced which required hiring sitters during the day rather than taking her to Adult Daycare; my brother and I kept the same pattern.
If your FIL is in Independent Living even with delusions, he is likely in the early years. If you can describe his condition more specifically and what "getting into trouble" means, that would be helpful. It will also help to judge how long you would need to provide changing types of support.  Mom went through each stage until she could no longer swallow in the final stage. This was the most accurate delineation of mom's progression, even down to timeframes, and it may be helpful for you if he suffers from ALZ.:
https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/. If he suffers from another type of dementia, there are other guides out there.
Taking care of your FIL will probably feel like going back to work at the same job that robbed you of energy, hope and joy. Two weeks is also not enough time to process your loss.  In retrospect, I went back to work way too soon after both dad and mom passed. Don't make my mistake. And don't feel guilty.
I know that you want to help, and you will, but there are other possible combinations that would not require you to be there every third night or to dive in immediately. That requirement will also morph into greater needs, and even three people alternating full time may not be enough, regardless of will or physical, emotional, or spiritual strength.
First, it would be good to start to work through your grief. I went to a hospice grief recovery group and the book we used was "The Grief Recovery Handbook" by John W. James and Russell Friedman. You can read the book and work through the exercises yourself, or see if there are groups in your area that offer this program. I went through Crossroads Hospice and it was excellent. It took me the full 10 weeks to even begin to process the loss and listening to and talking with others was helpful. My personal physician did not understand and felt that I shouldn't be taking that long to "get over it" and there will be others who may urge you to push past and ignore your feelings. Don't.
Second, I would recommend that you have a talk with your sisters-in-law about the reality you are all facing and come up with a plan. It might be time to move FIL into Assisted Living, which will afford you all some assistance and oversight. But if you read through the stages of dementia, you will see that more assistance than that will be needed at some point, and may even be needed now.
  Third, you need to be honest with them about what you need to do for yourself, how they can help you, and what you all need to do for one another in this continued odyssey.
I can tell that you're a truly good soul in pain. Your feelings are your own and you need to protect your right to feel them, regardless of the internal messaging you may be giving yourself to "get over it" and "move on." You matter. You are important. And your loss is very real and very big. Don't downplay it, even to yourself. 
Please take care of yourself.

My condolences on the loss of your husband.

If your SIL's want to take turns staying with their father, I think you let them and don't feel like you need to participate. He is not independent obviously and should be in memory care. That will not kill him. What will kill him is. his progressing dementia and the things that brings. like bone-breaking falls, lack of adequate nutrition and overall failure to thrive. That will happen anywhere but you will not convince them. He literally could be moved to the memory care area of his facility and he will do as well (or as poorly) as he is doing now. But you probably won't convince them.

My inlaws finally moved to independent living in their 90's. They really needed to be in memory care but my FIL thought he was fine so we started with IL. My husband is POA and we lived in Illinois near the inlaws; my SIL's live in California. They also said that leaving their home of almost 70 years would kill them. SIL's wanted home care. Inlaws needed 24 hour supervision; they were ambulatory so having care givers in the house just would not have worked and I was not willing to supervise them. I told SIL's if they wanted to hire and agency and handle staffing from afar, they could do that. Of course, they did not want to do that.

So inlaws went to IL which went well for 2 months. Then he started to fail, and he ended up in hospital. We did get 24 care for her but only until we could get them both into memory care. MIL fell and broke her hip, which was only a matter of time until it happened, she would not use a walker. She died a year after moving from house and he died without 18 months of moving. Moving did not kill either of them. The falls, the confusion, the lack of eating, the incontinence and UTI's killed them. And that would have happened anyway.

Had my SIL's been here, my husband would have let them take over if they wanted to keep them at home but I would not have involved myself in that even though I am a retired nurse. As it was, I managed their care, took them to doctors until we began using the facility doctors, and handled all of their issues. We saw them weekly at least but my husband, their son, is alive and participated, although I still did more than he did. I probably would have done it anyway, since they were very nice people and great inlaws.

I say this story so you know that you don't have to feel like you need to participate in this. As you say, no one is pressuring you. So do only what you want to do with an eye to how you will feel afterward when FIL does die. If you value your relationship with your SIL's, then help them as you feel you can. But only if you want to.

I think you need a break to deal with your grief. If you go into another caregiving situation you may just stay in the stress/ high alert mode. My sister died a year ago and I am still dealing with it. With Covid and some of my health issues I am stuck in a stress loop and can't really deal with her death. Sounds like assisted living may be a good option. Take care of yourself and give yourself the time and space to grieve. Good luck!

You are grieving and need time to do this. You are a very caring person but you need time for yourself now. You must be exhausted and worn out physically and emotionally. Be gentle with yourself. Believe me I know about grieving.

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.

I would get him into assisted living.

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.

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.

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.

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.

Was the UTI culture negative?

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.

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!