How has being a caregiver/caretaker affected your home life?

Jules, I think you should post your own question so that we can hear some details. You say that recently you were “just notified that I would be taking my MIL into my home to care for.” This is a disaster for you and for your marriage. You CAN’T just be ‘notified’! You have some rights in your own home! Your husband may have very little idea about what this will mean for you and for him, in terms of your health and the lifestyle for both of you.

Marriages break up over exactly this – your own life is totally changed, you are stressed and angry, but your husband thinks you are ‘exaggerating’. Families break up when in-laws and other family members have expectations but do very little to help. Please give more details so that you can get comments that might work for you in your own situation.

Jules.. I understand your feeling of "what about us" You sound alot like hubs and I in that our DD had moved out about 3 months before my parents moved in. we had alot of adjustments to make, and I will admit some problems with attitudes and temper ( not physical) They lived here ( dad for one year, mom until this month) since about 2015. We survived.. but it took alot of adjustments and talking. Now Mom is gone, and we are going to have to find out new normal,, but we know its out there somewhere! This week I have been somewhat overwhelmed with phone calls, packing things up,, being tired and such.. but we have tried to do a few "normal" things,, and it was nice.

I am sorry to hear of your stress! I recently was just notified that I would be taking my MIL into my home to care for. I have just recovered from my last child leaving home and am adjusting to it just being my husband and I. He is very supportive and we have been having fun. I dont mean to sound selfish BUT I feel like or am scared that her moving in (with all her medical issues) will forever change our lives and possibly hurt my marriage. Just trying to absorb it all!
I did want to ask you how much does your husband help you with the 24/7 care of the mom?

I am sorry to hear of your stress! I recently was just notified that I would be taking my MIL into my home to care for. I have just recovered from my last child leaving home and am adjusting to it just being my husband and I. He is very supportive and we have been having fun. I dont mean to sound selfish BUT I feel like or am scared that her moving in (with all her medical issues) will forever change our lives and possibly hurt my marriage. Just trying to absorb it all!
I did want to ask you (mysteryshopper) how much does your husband help you with the 24/7 care of the mom?

Caregiving pushed me to levels of stress/exhaustion that should not be possible. Body aches with no particular cause, brain fog, no energy, a temper so short that it shocked me at times, forgetting things, overall exhaustion - which ironically also led to insomnia. Failure to even maintain my own appearance. That burning feeling in my eyes when they've been open too long with no sleep. Crying. Constantly trying to keep the peace among all parties - including LO who was on a fast track to a NH, but angrily denied this was the case. Constantly having to explain to all parties that I'm doing all I can. Sending thorough updates via email which went unread in many cases. Somewhere in this mess I developed high blood pressure - which I fear I will always have and I think the meds do affect intimacy. I don't really remember even having a TALK with DH about "us" during this time. Any "couple time" or talking time was spent doing damage control on LO's behalf. Alone time was difficult because either there was no "alone" time or there was no energy left (at least on my part). It's been years since I was hands on caregiving, but I do feel slowly like I'm getting caught up where some relaxing time is justified. To get here, I literally wrote out a schedule each day and stuck to it in terms of how I could ever get things done. After years of this, I have gotten enough done and have stayed up to date with things that I learned to take small breaks - which have helped more than I ever thought they would. A few weeks ago, I watched a movie and did not feel guilty about it. I found that getting caught up and staying that way is key- - but it takes time to get there. It will take much longer to catch up than it did to get overwhelmed in the first place. The mounds of paperwork and general decluttering are the worst because it all needs to be looked at before it can be shredded/discarded/donated.

Obviously, you need--and deserve!--a break. I don't think anyone could shift from the responsibilities you mentioned and go right into being in the mood. I don't know how you can prioritize some time for this, but it really is an important area of self-care. First you have to carve some time to get what you need so that you then could possibly feel like being available in that way for your husband. Maybe it's a nap. Or maybe a long soak in a hot tub with a good book. Maybe your husband would help you "guard that time" for you, in an anticipation of time together. Do not apologize for doing what you need to do to take care of yourself enough that you are able then to enjoy some time with hubby. This is good for your mental and physical health not to mention your relationship. Think about the long game. :-)

Im in the same boat. We've just become caregivers for my 85 yo father, my husband and I, so I'm the last one to.give advice. But forget about all the things you used to enjoy, your freedom, your privacy are no longer an option. Forget sex.
He does have some evidence of dementia, Shocking memory loss, some cognitive impairment and religious obsession.
I'm just venting but it's a long road ahead.

I am a caregiver to my husband who is diagnosed with Parkinson's and he is still thinking he can be sexually active. He has ED and I have issues that cause me to be unable to be sexually intimate. What we do is sit next to each other and find time to spend just relaxing and watching a show on TV or a video on DVD. Intimacy is not always meaning sexual. I am exhausted after days of being awakened from his climbing over the rail to prevent him from falling out of bed, picking him up off the floor when he falls, making meals, cleaning the house, paying bills, driving to doctors, grocery shopping, and the list goes on.
Before I became the care provider to my husband, we were both sexually active, and I was frustrated with the ED issues, I then reviewed the situation and accepted that those days were gone and to just accept that. With your husband, he is not sick and while you may be tired, you need to find cuddle and intimacy time with your husband, you may find that it will be relaxing and reduce some of your stress of being the care provider.

Good luck

I am guessing you are NOT taking care of him as the caregiver but someone else.  Yes I know what you mean, it is tiring to have to make appts, buy groceries (if you do) for someone else, check on them everyday, etc., however is there anyone else that can help with making appts? probably not IF you are the one stuck doing all the "taking to" appts, etc. so you would need to know when it would be.  Is there anyway that you could just hold hands for an evening, sit close to each other.  Find some way to get someone else to handle something for a weekend and just go somewhere, even if in the same town, rent a hotel room.......and just relax........I know its hard with the virus situation and depending on where you live and the weather...........maybe rent a small camper thing and just go to some small campground.  put all phones on "OFF" position.  If an emergency comes up......someone else can handle. (911 is only but a call away). you can let paperwork for the person you are caring for in case something like that would happen.  We all worry about our loved ones and try our best to do the best, but as I have been told.....whatever happens will happen.  (we were planning a trip with daughter/hubby on cruise last year..yep got cancelled, we rescheduled for this coming up year - not sure if will get cancelled again. I have to arrange for 3 people to come check on our mother to get her meals, paper, etc. my daughter said well if something happens I could always get a plane back to states.....I said NO.......whatever happens happens so IF I have to worry about that, no need to go on vacation)..........I wish you luck.....but do try to get away for a small weekend thing just to be with hubby.  contact office of aging for some help.

Imho, do not attempt to do everything on your "to do" list because you'll never be done. Tell yourself that you're going to cover the absolutely must do tasks and then put it aside.
Treat YOURSELF well - with bubble bath pampering, perhaps a new item or two of clothing. Only then will you be ready for cuddle time with your honey.

I tried to do EVERYTHING while living out of state caring for my mother. When she passed away, I was too tired to even put on a pot of coffee for guests, letting my daughter take over. I was done!

I think what others have suggested for starters might help - set times for doing these tasks, then put them aside, just like a job. Cover the time-sensitive necessities, and if it isn't all finished at 5, it's quittin' time anyway! Those other tasks can wait - 12 more hours won't make them disappear or grow worse.

Nice hot bubble bath, just for yourself, to bask and relax. Nice soft comfy PJs to lounge in. Maybe some snuggle time with hunny... No need to jump into anything until you can get your "unwind" time down pat. Date night might be helpful too, once it's safe to get out and about, otherwise, improvise! Set up a picnic in the LR. Set the DR table with candles, flowers, dress up like you were going out, etc and get a takeout meal from your favorite restaurant. Make it fun and forget the "duties" for a while. Even those in the staff caring for your LOs get to go home and unwind.

Just before posting this, I saw your comment about your "donated" bags of clothes... hahahaha... well, maybe it's time to buy some more "fashions" for yourself.... Probably more choices now, and probably better stuff too!

I know you really wanted answers from the ladies here, but hopefully, my male perspective comes across respectfully. Right now I'm going through a duel caretaker situation with one parent, 72 yrs old, hospitalized after being in a skilled nursing facility, after a serious hospitalization for a health event prior, and the other parent is 84 and needs daily assistance and some watching to prevent accidents due to bad knees. All my other siblings have families, I'm single right now, childless. I don't know how I would be able to maintain a functional romantic relationship, that wouldn't be one-sided, because of the emotional demands, burden, and expectations I'd be placing on the other person, with little time to reciprocate, and then to chase sex would just be using the person. As a man, I think most men, in general, need to grasp that old pearl of wisdom, that sex in a relationship doesn't begin at night when the bedroom door closes, and the light goes off; it starts in the morning when you get out of bed and greet each other in the kitchen. In other words, intimacy starts by maintaining the emotional part of it throughout the day, which is one of the first casualties of an ongoing caregiver experience. I think people in general, who would like to continue being intimate during this whole process where the burden is mostly on one partner, need to work to maintain a safe place for keeping emotional intimacy going first during this whole thing, then a desire and enjoyment of sex would probably follow.

Unless xrayjodib is in pain or very uncomfortable when intimate, simply being available for her husband is probably 75% or more of the solution. Making herself available would be a way of showing that his needs haven't been forgotten, and it's probably less important to him whether she can or wants to "perform well" (however she wants to interpret that) than simply allowing him to do so, and he'll probably be very grateful for whatever she can provide.

I don’t have the answer. But I too have the same burn outs. What I’ve been doing lately is taking better care of myself and eliminating some things in my life. When I go to bed I’ve been doing some meditation to relax!

I have been a caregiver for over 10 years first to my mom and now my dad (98). I have given up my life to be here out of six children I am the only one. I have continued high blood pressure, my stress levels have been out of this world and I have other health issues because of all this stress. I try to take off for a few day when I can get someone to stay with dad. These are not very often. I am told my own children that if I ever got like this I will go into a nursing home. I will not be selfish.

I just want to give some perspective as a wife who is usually in the stereotypical husband's shoes in this situation. Over the course of my marriage, I have always been the one who wants sex more. We have had many dry spells and not by my design. I have had a tough road with my mom's and my dad's care as well as a brother acting atrociously throughout...sex would have been a welcome escape.

Simple advice--try your best have sex with your husband. It can be EXTREMELY LONELY being the sexually neglected partner.

My husband and I go for a walk or a hike almost nightly. It seems we get out any issues at the beginning and then by the end we are very loving towards each other.
Our intimacy is related to time together and getting everything off our chests. Since we get out nightly, there usually aren’t any issues that are so big that sour the moment.
I will echo that sex is fun and doesn’t have to be a big deal. Embrace the quickie. Embrace different times of days and locations. However, NEVER wake me up in the middle of the night! I have my caretaking duties to do that.

Jodi,

Years ago I had a co-worker who was having a similar problem. Just not in the mood, but she had a good marriage and knew her husband was feeling neglected (for lack of a better word).

She ended up going to her gynecologist and got some very low dose testosterone. It was a game changer for her and she raved about it.

I don't know if this would be appropriate for you but I just wanted to throw it out there as a consideration.

Sex should be fun and it’s the perfect time to break out of your shell and release some of your caregiver frustration and take control and dominate him with what you want, when and how you want it and feel alive and like a badass! Try it!

I could have written the same post....And honestly between caregiving, kids, works, school and all the other every day things that need done when I sit down for the day I normally just pass out. I totally understand the patience wearing thin and in my case my mother showed more of a dislike for my DH as her dementia progressed. Unfortunately it just seems like there is no light at the end of the tunnel with all this COVID etc. but I can totally relate to your post. Good Luck and hope you find a way to catch a break.......

OK, I am gonna get in trouble here, but have you considered a bit of "MEDICAL" marijuana if it is legal in your state? They even make "tea" now. I mean it does kind of loosen one up.
Not, of course, as though I PERSONALLY would ever consider doing such a thing. They might take my badge!

Omg, lol. May I ask, how old are you?

You see people older seem to view sex different than the rest of us but oh, well. Most of us do not do it for another's sake, we do it because we choose to, not because we have a one sided relationship and have insecurity issues.

The secret is you cannot be happy and focus on others unless you take time for yourself. Wake up an hour early bake, take a bubble bath, read stupid things on the internet (no AC, nothing to do with caregiving at all, nothing concerning physical ailments), whatever, focus on what you like or enjoy.

When you focus on yourself, other things will come into focus and life will be much easier.

For a man, sex is physical. For a woman, it's mental. Having sex when our minds aren't into it is very difficult. If we do it for 'their sake', they'll know it. The idea is to have BOTH of us involved in intimacy so we can BOTH enjoy it. Not one doing a favor for another or the 'grin & bear it' method. At least that's my take on things.

Date night, as suggested, is my #1 preference in this department. That way, I can plan for taking a bath, setting the mood, the whole nine yards.

Hope you try it and it works a charm for you & DH! And also that you can treat your caretaker role as a 9-5 type of job, as cwillie suggested. I turn my phone to vibrate after dinner and leave it that way till morning. There is NO job on earth that should be done 24/7. Your loved ones are in care homes, as is my mother, and THEY are the ones doing the hands on care. They know how to call 911 if necessary so WE can get the rest and the breaks we need.

Your profile says that you are caring for two women, not your husband. This makes it easier, because it isn’t your husband’s body that has become difficult to bear with. My suggestion to you is just to go with the sex, however you feel. With low expectations, it doesn’t take very long. It is a genuine act of love when you don’t really feel like it. Just do it with and for him, without expecting a Hollywood love scene, candles, massage, all that paraphenalia. You may enjoy the simple pleasure of skin contact. It will make him feel better, and that will make you feel better too. Sometimes that’s the way my marriage works, and it works well for both of us. We look after each other’s needs in that as well as other ways. Very best wishes, Margaret

This may sound hateful, and it might be too graphic, but after having to clean my husband's body after an episode of diarrhea, the last thing I want to do is be intimate with him. He is 81 and has had ED for about 6 years, so our intimacy has been non existent for several years. Now one of his meds has rekindled his interest, but I find I just don't to.

My advice is to try to treat caregiving as though it is a job; dedicate certain days/hours to getting done what needs to be done and then outside of that mentally remind yourself that you are off the clock. I've also heard that setting aside some specific one on one time (a date night?) can be a good way to keep the spark alive between couples.