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Do you ever wonder if you can “find” your way back after caring for a live in family member? I am seriously concerned the damage can’t be undone. In my case its my FIL. I’ll spare the details of all of the reasons I do not have any respect for him, but can tell you that it has a major impact on our relationship. Yes, I have talked to hubs about how I feel many many times.... we finally hired an in home service to come out once a week to get him to bathe and change clothes, this was the first week..... after she left I was so disappointed, when I had been very clear about the need for thorough bathroom cleaning. She did everything else wonderful and took the trash in the bathroom out. I looked in there this morning and see that she only swiped around the inside of the bowl, leaving the sides and around the floor a mess. Maybe I’m too picky but when you clean a toilet it is too to bottom inside and out.... I was wondering why the bathroom still smelled so bad. After I checked out the toilet itself, I had the awesome discovery of finding FILs underwear in the trash full of poop. I am so disgusted and worn out. The “benchmark” for removing him from our home (according to my husband) is when he cannot toilet and or needs to be hand fed. This has so sucked the joy out of my life that I worry things may never be the same between me and my husband. I know we will not just “spring right back”, and hell for that matter, we may go first! I am beyond depressed and feel hopeless....so sad.


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Ssidelined, If that's DH's line in the sand, then why are YOU the one on poop duty?

Fil's bathroom is now DHs job. Hiring help, supervising help and cleaning up surprises.
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TaylorUK Jul 2019
Absolutely agree.
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I think that honestly it may be time for placement. It sounds as though you are unable to move away from the caregiving and it also sounds like the care is substandard. I don't hear a whole lot of good things about care often enough. But this isn't working, and the answer is not taking this FIL into your home. I think the answer now may be that this isn't working, and it goes past plan B to plan C.
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TaylorUK Jul 2019
I often think that we do not hear about good care on here, because if our LO are in good care we don't need to be here and probably aren't - so its only those who struggle to find good care or are dissatisfied who are here and making negative comment.
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I will tell you first hand that it is not easy to "bounce back" after caring for your LO, living in your home for a long period of time, in our case it was my FIL, 13+ years in our home and he passed away from Lung Cancer on Hospice (also in our home) for his final 12 weeks.

First off, as you know, the mental and physical and sometimes financial effects of caring for your senior parent, especially if they are difficult (ours wasn't too too bad), however he did have NPD, which became more apparent as the years went on, but I will say that the lack of intimacy definitely took its toll, as just the fact that we knew he was "in the next room" kinda, well Definitely did put a damper on what was previously a healthy sex life, and remember, like most of us sandwich generation, we had only just launched our youngest of 4 kids out into the adult world, so what should have been the best years of our lives enjoying ourselves traveling and not having to answer to anybody else's problems, was now restricted by having a parent to worry about, even if only it was about serving breakfast, lunch and dinner, and then as the years passed by, we were essentially shackled to the home, not able to leave him more than an hour or 2, or struggling to take him with us (which he never wanted to do) and then as his illness progressed, Never being able to leave him at all. You just never know what the future holds in caregiving!

Then once he did pass, just the sheer exhaustion, the situational depression and grieving process took more time than you could imagine. It was then that we were up against the decision to stay in our home with the constant memories of those difficult days and his death having occurred there, or sell our home, to downsize, thinking about our own future and that of our kids who are now busy adulting and having their own children, as we definitely don't want to be a burden to them, as we had had it, that is for sure!

So we sold our home, bought a Manufactured home in a 55 and over community, and we Love it! It's only been 3 months we moved in, but our kids all think it was a good decision, we are very comfortable and still, it's only been almost 2 years since losing our last remaining parent and we are still "recovering".

It takes a long time to get over losing a parent, and whether or not you can Ever get back to your previous life, hmmm, my guess is Not, but you can find your "New Normal", and redefine what you wish your life to be going forward.

Unfortunately, what you cannot get back is time. The time I especially miss is the time that missed seeing my Grandchildren as much as I would have liked, as it was especially hard taking my FIL to places like their baseball games and school activities, so we would often split up, not being able to enjoy those activities together, it was hard enough taking him to the occasional holiday evening, but those are the things that we give up as Caregivers.

No matter how your Caregiving days come to an end, you do the best that you can, and that's all we can do, but I highly recommend that you do not wait until things get too difficult, and they impact your life YOUR RELATIONSHIP beyond repair.

Sometimes you must take matters into your own hands and make changes so that the difficulties of Caregiving don't ruin your life beyond repair, whether that is getting your parent into an Assisted living situation or Nursing home, get your parent into Adult Day Care or get help into your home to make your life easier, do not wait until a crisis! I reccomend you do your homework Now, and have a sit down chat with your spouse and your elder, and be very Frank about your own needs for the betterment of your family life, even if that means that they won't be happy about it, as your life and that of your families must come first! You Matter!
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sidelined Jul 2019
Hi Stacey, wow what insightful feedback. It makes my head spin to think about having him here 13+ years. I am sorry that during the years you and your husband should be able to spread your wings and enjoy the hard earned fruits of your labor, you were stuck at home. Thank God we are not there yet. I Pray to the Lord that I will not be a burden to my children. You can’t help but be resentful of them and their lack of planning or consideration for the family they are destroying. I realize that some families are very close and while far from easy, they may not harbor these resentments.

Wishing you and hubs a long happy life, enjoying your children and grands, in your new home!
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My aunt died 3 months ago, and I no longer need as many hours of sleep, and am feeling better.  But my health is not as good, and my husband's is worse.  After bemoaning all the things we never got to do together, I am just beginning to move on to 'our new normal.'  It sounds like it is time for FIL to move into more care.
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Amen, and I did make him go retrieve the trash can package. Disgusting.... thank you for taking the time to respond !
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TaylorUK Jul 2019
Well done you. Husband has to be really involved in the care to see for himself the issues.
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It's been 7 months since my father left my home for LTC, and about 3 months since I basically resigned all caregiving duties. I'm still recovering. I was his caregiver 4 years and he lived with us for 2 1/2 years, while my husband and I were also trying to raise our 4 children (2 of whom have disabilities). It takes its toll, especially if the person is a difficult personality, so it takes time to get back to some semblance of "normal". Since your person is your husband's father, make sure hubs is doing a good portion of the caregiving. If toileting was a line in the sand, enforce it. Poopy underwear in a trash can is not acceptable behavior. My dad would make mountains of soiled pullups in the bathtub, or stuffed behind the toilet. And they don't stop it even when talked to nicely or yelled at or anything.

Once your FIL leaves, be prepared for a honeymoon followed by a downtime. I was so ecstatically happy when my father was officially out of my house. I slept well, enjoyed my kids, felt so free. That lasted about 2 weeks, and then it felt like the world crashed down. Only in the last couple weeks have I gotten back to pre-5 years ago feeling like a good mom, good wife, taking care of business, lower anxiety and depression. Take the time.
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busymom Jul 2019
Thank you for being open and honest about your feelings. More people need to know that there is a toll when it comes to taking a loved one into their home, particularly when there are other family members who need care. You sound like a very loving, caring wife, mom, daughter. There just isn’t enough of you to go around to all those who need you, so you were wise to see this and get your dad where he could receive the care he needs and you could breathe a bit more freely.

Some people can care for a loved one in their home, but not everyone can. As we learn our limits, we do need to set boundaries and do what is most important. Your husband and children should be your priority. Your dad while he may not voice it, should be aware that your family should come first. When you said your vows in your marriage ceremony, you were leaving your parents (to some extent) and joining your life with your husband. He and your children then became your priority. It doesn’t mean you hate or abandon your dad (and you haven’t done that).

Having children with disabilities is also huge. I applaud you for seeing their needs over the needs of your dad (who can be cared for by other loving and caring staff).

Take care of yourself and your family. Visit your dad when you can (include the kids as much as possible, since this is a huge learning and loving experience for them, too). Go on a weekend retreat with the hubby, if able. Maybe get a manicure or massage for yourself. Rest when you can. You're doing a good job!
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If she is there to bathe and take care of your FIL, they aren’t there to clean the toilet for you. You would have to hire a housekeeper for that. Does your FIL have any money because you can hire someone more than one day a week and if he doesn’t, Medicaid will pay someone for I think 15 hours a week. If he was in the service they really have great benefits as far as in home help. My MIL had Alzheimer’s so she went to a great VA hospital paid for with all private rooms, and then she got a check around 350.00 a month to buy diapers, hair done, etc and that was 12 years ago.
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busymom Jul 2019
If there are any VA benefits to be had, just note that it may take months to a year to get the process completed. We’ve been working on this for over a year for my uncle. He just got his first check to help with some expenses, but the amount still isn’t correct. Today my husband met with someone from the VA at the facility where my aunt and uncle live. Hopefully, that will enable a larger sum to be provided for their care. They will soon run out of money if they stay in the AL facility where they’re currently housed. If they can get larger benefits (which we know they qualify for), it will allow them to stay where they are for a while longer. If my aunt goes first (she’s under hospice care currently), then we may have to move my uncle (the war veteran) to a VA facility (which around here is not that wonderful).
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Sounds like he has reached the stage you husband set as bench mark so now is the time for husband to find him a facility. Re your relationship, yes being a carer is exceptionally damaging but more damaging is not having quiet reasonable conversation with your husband on the situation - it may well be that a couples or relationship counsellor can help you here. On the in house care, you need to ensure you have employed the right person or people. Those who offer personal care are not usually there to do housework and vice versa. It sounds like you need considerably more assistance than once a week and from different people. Others have given details on what you are likely to be able to access.
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sidelined Jul 2019
Thank you Taylor!  I appreciate the time to give feedback and suggestions.  I will certainly take these into consideration and hopefully find a better way forward.

Blessings to you!
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Time to start finding alternatives and present them to your husband and say “pick one”.
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sidelined Jul 2019
Agreed!
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Long ago when my hubbys Dad stayed with us I had the same exact issue. Poopy towels, clothing, etc stuffed in hidey holes. Just disgusting,

hubby kept just saying I was exaggerating. One day I could find no clean towels. With 3 bathrooms, believe me I had A LOT of towels.

went into his bathroom, the smell just about knocked me over.

i was so mad...went straight into our bedroom where hubby was still in bed and told him that he needed to get up and get that mess in his dads bathroom picked up and cleaned up...because I was exaggerating.

Hubby cleaned it all up and made an appointment that afternoon to move Dad to a NH. dad moved that same week.

Funny how it is no big deal to hubby as long as he doesn’t have to deal with it. For months it was my problem...but the one time he had to deal with it, boy he jumps right up to get Dad moved.
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disgustedtoo Jul 2019
Make them walk the miles and miles in your shoes... likely won't make it around the block!!! If he said anything about the issue after clean up, I probably would've thrown the "exaggerating" back at him! ;-)

EEEEEwwww... just EEEEEuwwwww!!!! THAT would be it for me, if I had taken anyone in...

(other than finding some solid poops in a plastic bag that previously held multiple pocket tissue packs while looking for her hearing aid, I don't know that mom does this - she went from her condo to MC - I was not up to caring physically or otherwise and brothers wouldn't know what to do! They haven't reported it to me if she has.)
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Without being too longwinded. I almost feel relieved my mom is now is a NH. No, the care is not great, but likely better than could offer at home. She is on a feeding tube I would need to change at least once a day and could not rotate her in the bed alone. With dementia as she has, no verbal communication at home would be tough. She sleeps most of the time and would require more care than before.

I do not believe I could find an aide to help me with her care if even at any reasonable cost. My life was strained before and needed an aide to stay with her before I could go anywhere. This has lifted and I can see her every other day so I think she knows who I am and am there to hold her hand and talk to her.

I truly was at burnout stage before and now the burnout is clearing her house out on my own knowing she is never coming back and doing so while she is still living.

Hard on the heart, but just have to face reality.

Prayers and strength day by day is what I have.
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sidelined Jul 2019
Prayers to you Ernie. It sounds like you have been a good and dutiful son!
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At this point I would hold hubs to his "benchmark" and if he changes his mind, then cleaning up and caring for his dad becomes HIS job. Make yourself scarce! Practice the words "Not my job, man!"

If you haven't already, read KatieKate's comment - sounds like a similar issue and by putting these tasks on his plate, the transition happened for her!!!

As for the cleaning - I would check back with the service hired. It may be as others suggested that you might need to hire a cleaning aide as well as a bathing aide? We never got that far, only 1 hr/day mainly to check on her and make sure she took her meds from the locked/timed dispenser. I know one aide was always trying to do some cleanup when she was there - sweeping kitchen, bath, cleaning toilet, etc, but not sure about the others, I think they just socialized with mom. I didn't really care at that time, but that only lasted a short while until she refused to let them in. Off to MC then mom!
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sidelined Jul 2019
Hi, thank you for your response! These tips are always helpful and I appreciate them, as this has become my lifeline of sanity..... I have turned “all thing FIL” over to hubs.... as for the home health agency, they only reason I said anything about that was because that is part of their service. Limited of course to the patients bedroom and bath. I would never ask someone to clean up his mess otherwise. By the way, it has been one week since they were here and he is still in the “after shower” clothes he was in last Wednesday.... I am surprised his nasty clothes do not walk right off of him... frustrated beyond belief....
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I hope we can find ourselves again! My husband and I took very good care of my Mom for 13 yrs and recently she’s moved in w a sibling.

The first couple days she was gone were strange but I didn’t cook one meal that whole first week! We ate salads and sandwiches and felt like little kids again. It’s not easy but we’re leaving with no guilt and with a free conscience. Those siblings who weren’t there for 13 yrs had to step up as we’re retiring and moving with no forwarding address!!! Don’t harbor any guilt as you have just as much control really as I did which is NONE. Be at peace. I wish you well!
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sidelined Jul 2019
Hi, thank you for responding and sharing. I have to say, when I read 13 years I was looking for the nearest cliff...... !!!!! I am glad you have relief now, and I Pray to the good Lord that I am never this kind of burden On my kids
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Little confused. Is FIL still in ur home? Or now in a facility?

Me, I would have never physically cared for a man. If husband works then an aide is hired during the day out of FiLs money. When DH is home, he is responsible for his Dad. I will cook, clean, wash clothes maybe wait on him. And that depends on how he treats me. If DH is retired, he cares for Dad physically.

Dementia goes hand in hand with Parkinsons or Dad is just lazy. Time for pull ups.

I think to get ur life back after caregiving it may take work. Maybe a date night once or twice a week. Talk about what u want to do now the caring is over.
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sidelined Jul 2019
Hi JoAnn, thank you for reading my post and taking the time to respond. FIL is still at our house..... I did not realize that dementia and PK go hand in hand..... FIL is fully cognitive, but his movements are the problem.... he has sat in front of the tv, sleeping, for years. Even before we had to take him in. I have converted every possible caregiving duty to hubs.... we are not old enough to retire, but he has more free time than I do. FIL is not mean or sassy, he just dislikes me as much as I do him.... unless it is “morning” we do not talk. My issue is that we do not have separate living spaces and he sits outside my home office all day, war hung tv, sleeping, snoring, you name it. Yes, I keep my door closed, it any time I come out, there he is..... as a woman, I am sure you would agree and appreciate that we need and really have to have some time alone in our house..... I have neither..... I have thought about going to Lowe’s and buying a garden shed for just me!!!!!!
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Sorry for what is happening.
The general rules of "No good deed goes unpunished" is at play here.
"Good help is hard to find"
"If you want it done right, do it yourself"
It should not be that hard for your help to understand.
I'm not sure if "Hubs" is on the same page as you, but that is a must. Whatever else happens, the two of you need to be in agreement.
Are you sure he's listening. Or is he hearing but not listening.
It does seem that he needs to step up and put some skin in the game.
After all, it is HIS father.
Good luck.
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sidelined Jul 2019
Hi whatsagipper - Thank you for your response!

I agree about the help situation, and have taken steps to correct this.  I am truly not a tyrant and super picky......as this was part of their care service, I just did not want to have to go behind them.  This like a dog chasing its tail....  So tired and really at the point of not giving a __________ anymore. 
FIL is still sitting in the same clothes he changed into last Wednesday when they came out.  Forced him to get up and take a shower, helped him get fresh t-shirt and shorts on..... and there it is..... it is like pulling your foot out of the mud and watching in fill right back in.  Frankly, I am ready to get the Lysol out and just let him be.

As for hubs - I think he is listening, but blocking out truly absorbing what I am saying.  It falls on deaf ears when I have repeatedly said I need to have some alone time............   I think he is just trying to stick it out until the "time" comes. 

Thanks for the well wishes, and wishing you the best as well!
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You should report this to the home care service. I agree totally with the toilet cleaning issues. I even clean the toilet before I have the occasional cleaning service come. My family always had the running joke that I cleaned before cleaners came. The service you described was beyond sub par and the agency should be aware of this and if possible you should post a review. I am sorry for all you have endured. A monumental change is bound to have aftershocks. I hope in time you find some peace.
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sidelined Jul 2019
Hi Riverdale - thank you for reading my post, and taking the time to respond.  Yes, I did report it to the service.  I made it clear that I was not throwing the caregiver "under the bus" because everything else she did, she followed to the letter.  However, like you said, a thorough cleaning goes way beyond just swiping and moving on.

You are also right that aftershocks are to be expected.  Hoping for better days, and wishing the same to you!
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Um, I am confused, husband has stated that his line is toileting. Does he not understand that someone messing their britches has crossed the line?

It is the hardest thing I ever did, placing my dad and we didn't even have a good relationship, so I can imagine that he is full of turmoil about putting his dad in a facility. However, can you tell him for me, that dad will survive and he might evn thrive, he will be able to be a son again and do enrichment activities with dad. Dad will be fed 3 meals with snacks, he will get his meds, he will have others his own age to socialize with, he will be bathed a couple times a week and he will get clean clothes more then once a week. He is being unfair to his dad that needs a village to care for him, by taking this on his shoulders he is depriving his dad that village.

You guys tried, it's not working and it is insanity to continue doing the same thing over and over expecting a different result.

Your resentment is so loud and clear, it is no wonder you don't know if your marriage will ever be the same. I have to say, most likely not, your husband has shown you that you can be unhappy and miserable and he is okay with it because his boundaries haven't been crossed, that takes something out of a marriage. When you believe you are a team and find out that is conditional it changes things. But, life is always changing, nothing stays the same, will you use this to make things better or worse?

Oh, I think that showering and brushing your teeth, combing your hair, putting on clean clothes, actually hitting the toilet with your waste, that is all part of toileting. It's personal hygiene that makes you a fit companion to be around. What does your husband consider it to be? Sounds like he is a bit vague in his idea. Perhaps clearing that up will help him see that dad has reached and crossed the line.

Best of luck.
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sidelined Jul 2019
Hi Isthisrealyreal - we have "exchanged ideas before" on this forum, but I have to say your response and feedback hit the nail on the HEAD!  It is so refreshing to hear someone else say "your resentment is loud and clear".... wow, someone else really hears me.....  AND you are so right, to be a "fit companion" there are simple and must haves....  since FIL is limited with his ability to efficiently use his hands, Hubs needs to help. 
I also agree with your point that hubs expects me to just go with it until "his" benchmark is met.  There are other factors in play in his decision making that are too long to get into here, but the fact remains, if hubs wants to postpone the inevitable, then he needs to step up to the necessary tasks at hand.  and yes, it does take something out of the marriage you thought you had.  FOOD is the #1 thing that is ALWAYS addressed - FIL will never be without here at the "Waffle House"....  even that makes me mad because cooking is something hubs loves to do - too bad his passion for cleaning is not the same.

The saga continues - but please know that feedback from other folks like yourself in this forum make things a little more bearable in the meantime, and gives us all a safe place to vent, help others and be helped.

Blessings to you!
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Appears that your husband's priorities are askew. You are so much more patient than I would be. For me, it would be either place FIL somewhere or I'll go somewhere else and I would. I am a caring person, however, I have learned that I must take care of me too, and I won't be walked on or taken advantage of by anyone. To me, your husband's line has been crossed, is he aware of this...and, if so, what was his reaction. I wish you the best...take care of you!
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sidelined Jul 2019
Hi DollyMe - thank you so much for taking the time to read my post and respond.  I am happy to say that we have had more productive conversations of late.  We have both had the opportunity to speak to what concerns both of us, and what a "moving forward" plan is. We have both agreed to "in home" Visiting Angel plan in the interim and working towards placement in the not so distant future.  Now, just to hang on...... 
Thank you again, and many Blessings to you as well!
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