How do I cope with my negative feelings about caregiving?

I’ve been there and there’s no easy answer. My sweet, funny, kind mother turned monstrous with dementia. It happened very quickly. I became sad, confused, lonely and scared to be around her. She suddenly needed care 24/7 and I felt like I was handed a life sentence. I love her but I was miserable and even thought of self harm I couldn’t see a future for myself. We had a care giver come for 14 hours a week but it did little to alleviate the trauma that had already set in. But then I started making contact with Long Trrm Care Homes and got her on some lists. Within 3 weeks she go into a fine facility. The first 6 months were a difficult adjustment, lots of guilt and grief, but things are improving me now and I intend to work with a counselor. I’m of the opinion that my mental health is just as important as hers and I’m starting to put myself first.

I read your profile and I see where you lost your son just before Christmas.

I’m so sorry for your loss. I can’t imagine how painful it must be to lose a child. I have two daughters and it would break my heart to lose them.

I saw how devastating it was for my mother to bury her first born son.

Caregiving on top of grieving is a lot to handle. I hope that you have someone helping out on a regular basis. If not, please consider looking into hiring additional support.

You recognize that caregiving is taking a toll on you. Honor your feelings without any guilt. You didn’t cause your husband’s health issues and you cannot fix them.

If this situation is becoming too much for you consider touring some assisted living facilities for him so you can get some rest and return to being his wife without the burden of caregiving.

Wishing you peace.

Following this closely. It's a tremendous burden and I'm really struggling

There is no easy answer, but I would say acknowledge those feelings. I made the mistake of pushing mine down or brushing them away out of guilt. I felt I had made a marriage vow and it said through better and worse. This was the "worse" so I better accept it and get over myself, especially marrying a man who was 24 yeas older than me! You are a human being and no one wants to feel 100% responsible in a marriage. I have been speaking with a therapist and many of the feelings of sadness and negativity are from pre-grief. You are grieving a person who is not the person you married. As your husband's health declines and he loses mobility or cognitive functions, the less you are a couple. You feel like there is just caregiving versus having roles to do.

It is okay to have some feelings that are negative. No one can be positive 100% of the time. Also, if it comes to the point where caregiving is wearing on you mentally, physically, and emotionally, please look into getting some different care for your husband. Stress can do a lot to your body and mind, so realize it is alright to pause and focus on yourself at times. What kind of pets do you have? Can they be of some comfort?

Resentment can grown when we give too much.

"I cook, taking care of pets and gardening plus all the caregiving".

Which of those things do you WANT to be doing? Can do well?
Which drain you?

Some people hate the drudge of preparing meals. Others love this daily chore. Love to shop for seasonal ingrediants, find new recipies, experiment with new flavours.

Some love to prune, weed, grow things. Love to care for, walk & groom pets. Love & need connection to plants & pets.

My workmate concreted his back yard & fake turfed the front. His son is considering giving away his dog as it was more work than he expected.

Many people downsize. Being squashed in a box vs freed of chores.. depends on your point of view.

The transistion from spouse to caregiver (I have been told) is huge. It is one of GRIEF - at the loss of the marriage & partnership as it was.

Some find forfillment & purpose in their new role of caregiver. Become the 'care manager' & maybe take pride in running the care, the houshold & finances solo.

Others I have met have simply said caregiving was not for them. One woman my DH knows spends time managing the daily aides for her husband (with a progressive disease). She stays his wife, not his aide. A man I met, said his wife got Alzheimer’s so he admitted her into a Nursing Home pretty quickly. He loved her. He was not a nurse, could not be a Nursing Home. He saw it as that simple.

Tabby, what would you 'outsource' tomorrow if you could?

It starts with your mindset. I am a full time caregiver for my husband too. We are both 62. He has semantic dementia and Alzheimer’s. I work part time remotely. Everything is on me. I think about how much I love him and how scared he must be sometimes, knowing that he is not how he used to be and can’t control it. Then I count my blessings that I “GET” to take care of him and make his days a little better. It’s an honor to help the man I love, my best friend, in his time of greatest need.

My students used to complain about having to do homework or study for exams. They would say, “I’ve GOT to do homework.” I explained the difference between GET to and GOT to is that GOT to is a punishment and GET to is an opportunity. It’s all in your mindset.

I’m not saying it’s easy being a caregiver but it is EASIER when we consider the difference we get to make in our loved one’s life. Remember, his illness is not his fault. Find time to do what you love but make sure loving taking care of your husband is part of that.

Best

My sincere condolences on the loss of your son.

In terms of feeling negative about your role now, hire help. A housekeeper and gardener, and aides to come into the home to give you respite from caregiving. Things will only get worse from here regarding caregiving and chores, so maybe it's time to downsize your home and use the profits to hire help and cut down on maintenance in general. Use the crockpot and freeze leftovers. Make meals simple with little cleanup. Use Walmart+ home delivery so you can stop grocery shopping. That alone makes a big difference.

Best of luck to you.

I watch Shark Tank every week waiting for the invention that will save us all.
I have pushed my Zoloft prescription to its MAX!!

Cheers to the weekend.

I am dealing with a 13 yr age difference myself and I constantly worry that about the time I am done managing my mom with dementia that it will be time to take care of my spouse. I have lost sleep over this, so I totally get where you're coming from. When things change from intimate partner to caregiver, it is very different and all of us are not well suited to care give. I will tell you what I have told myself....we knew the age difference would rear it's ugly head eventually. I try to imagine the roles reversed. Think about how good the years were when you both were younger and things were more equal. Smile. Now think really hard if there is anything you can do to lighten your load. Get rid of anything high maintenance in the garden. Join a group that you enjoy...gardening club, walking group, book club, bird watching, etc. just something that you have for yourself where you can socialize. When retired, I know funds are tight but if there is anything you can hire out, do it. I don't know what insurance he has, but is home health covered at all to have someone coming in several times a week so that you can have a break? Maybe take the chores and divvy them up by day instead of doing everything all the time. Laundry on Mondays, Yardwork on Wednesdays, grocery on Fridays. If you are both on long term maintenance meds, have them mailed instead of running to the pharmacy over and over. Maybe downsize into a condo so there is no yard work. Change in and of itself is hard, but it is inevitable. Think outside the box about your every day tasks and how you can make things easier.

Tabby, your profile says you lost your son before Christmas last year. I am so sorry and that has to weigh on you in all this. The 10 year age difference is likely of little import. What does seem to be an issue is that your husband has many health issues.

I would ask you to consider that were you to live alone you would be doing gardening, cooking and housekeeping. So what is different here is clearly your husband's health needs. You are correct in guessing that with age it is likely to get worse. But you mention a needed knee surgery you cannot get because of hubby's needs, and that's not good. What happens when you BOTH go down? I am dead serious here.

You don't tell us if this is a matter of dementia, or if this is health issues. We can't know what kind of care you are providing, but clearly you recognize it is too much and is endangering you. It is time to see your OWN doctor and discuss what this may mean now and in the near future. If you cannot afford to get yourself a good deal of inhome help then it may be necessary for your husband to accept placement.

I am so very sorry. Call your local council on aging and see if anyone has any ideas of how you can get care and respite.