How do I cope with my negative feelings about caregiving?

Caregiving a spouse is MUCH different than a parent. I understand the tasks are very similar but what it does to your heart is an entirely different matter. The dreams you had for the future, your sense of partnership and home are all broken. I appreciate the comments and tips that relate to caring for a parent but it’s just not the same. We are in a class by ourselves.

It would be nice if you could get someone to help you with all of this. If not possible, just do the best you can. If there is anythng you can do to make it easier on yourself , do it. Sorry for your situation.

Do the best you can remember the days of happiness. You think it is bad now wait until he dies you will have all kinds of second thoughts. What you could have done better. Did you get the best care. Did you tell him every thing you wanted too. Its seems like burn out but eventually it will stop. Enjoy the moments you have left. My wife was +20 in me. Now I am dealing with the grief.

TabbyT2: Seek respite whenever you can.

First of all, HEARTFELT condolences.

Secondly, I think it is safe to say we all acknowledge where you are in your life right now. Everyone’s journey is different, and while we cannot understand exactly what you are going through we certainly have some understanding of how difficult this journey is.

There are a lot of good suggestions in these posts. I especially like the respite care idea. It sounds like you also feel overwhelmed and stuck. Any suggestion at this point may seem impossible to follow through on. Finding help frankly is not easy. And there are finances to consider. You are already grieving your son, your husband as he was, your life with your husband and your freedom. Giving up your home and garden is likely an added loss. Even if you want to consider it, there’s the emotional stress, preparing, organizing, packing, etc., etc. It would be overwhelming for me and having been in similar shoes, like many who are posting, my first thought is you need to start small. Having a resource to support you and help you find what you need is important. There are social workers at the hospitals, although I have only found one (of many over the years) who was truly helpful to me. She was an administrator at the rehabilitation/nursing facility and I asked her for and she recommended a counselor. It helps to have someone to talk to. I have to also give a thumbs up to support groups. Support groups can an EXCELLENT support and resource. You may want to Google caregiving support groups in your area or reach out to your church, senior centers and hospitals to see if they know of any. Many are online. We actually are part of your online caregiver support group. So you have already taken a first step! Then I would suggest low hanging fruit. Do you have the funds to have someone clean your home once a week? Or cook for you a couple times a week? Can you do your grocery shopping through Amazon or the grocery store websites? Groceries can be picked up or delivered. Gardening is therapy for me unless I’m overwhelmed. Do you have the funds to hire someone to do the basic things in the garden? All these things are good to consider, but even little things are difficult and seem mountainous if you are not rested. This is why I like the idea of respite care. Your doctor might even recommend it if you talk to him or her. This may help you when you are talking to your husband about it. It will give you time to rest, to regroup, and to start thinking about next steps. Respite care is also a way to assess a facility in the event you do need to make that difficult decision. They may even let you stay with him a night or two which may or may not be something you would want to do. You could tell your husband you would stay with him for the first couple nights just to make sure he’s comfortable. Not all facilities allow this, but it is my personal opinion that a true care facility would allow you to be a part of that care. Financial support may be available through his health insurance. If he is a veteran, there may be veteran benefits he is eligible, dependent on level of income. I found a wonderful person through care.com who I hired as a caretaker, but she mainly cooks for us because my mom sleeps most of the time she is here. Just having someone prepare meals for the week was/is a huge help. After I hired her, I realized a few weeks later that I had not reached for my migraine pills which were a daily necessity for months. I would never have thought of hiring a cook, but we had to tell my mother that’s why she was in the house because my mother rejects anyone helping her. We told her she had hired her to help her out which she could accept. Never did I realize how much that would help me. She cares more for us so we can be rested to care for my mom. Just my thoughts - look for support, low hanging fruit and take care of you as best as you can.

I believe it is a manner of MANAGING feelings vs immediately getting past them. The more you want / try to push away the negative feelings, the more they will stuck with you - as you need to take a(n) action(s) to shift not only the situation but how you feel about it. How you feel about it affects how you manage it and the level of stress(ors) you experience.

Your situation requires that you put other strategies in place - to cope / survive - and you in the process of doing that now, or wanting to. Certainly, you are aware of the need.

Coping Mechanisms
* Accept 'what is' in terms of your husband's situation. Being angry 'at him' or the situation won't help you, him, anything.
* Figure out how / ($) if you can bring in care providers to give you a break.
* Plan for long term so you have a kind of road map of where you are going / where he is headed (I don't know his health / disabilities / needs) for AL ? memory care?
IMPORTANT
* Take breaks
* Make time (even 10 minutes a day) for exercise, walking, gardening, whatever you like to do. MOVING / exercise is really important.
* Learn / realize that changing / shifting your focus will change your mood and physical-mental abilities. When you are aware of being stressed out, take a break. Even sitting down to write in a journal "I feel like s--t today; I don't know how I am going to keep going ... get the feelings out, somehow. Writing is good, or calling a friend.
* Find / create your support / network. Realize that you need to lean on others who are there to support you. If you don't already have this, contact
1) local church;
2) Association(s) affiliated with your husband's disability, i.e., Alz Association;
3) Friends / neighbors (although tell them what you need; some won't know how to support you). Their good intentions may not be what you need. (I often 'just' need a quiet listener so I can get it out ...)

This is hard. It often feels like - and is - a non-stop need of draining you/r energy. The best we can do is learn to take care of our self with compassion. Learn that it is OKAY to feel angry towards the situation (not your husband). Get the anger out - (possibly) best through exercise/moving.

Find simple joys --- looking at nature ; flowers ; listening to the birds ; seeing blue skies/patterns in the clouds. Learn to re-FOCUS on little 'positives' (these mentioned here). Turning your focus / attention to the moment-to-moment beauty surrounding us, being grateful that YOU can walk and/or have whatever health you have ... Gratitute for the little - and not so little things makes a difference in how your brain processes feelings / which turn into / are chemicals. I know that when I slow jog that I tell myself "I am thankful I can walk / run" vs how tire I am or that I want to turn around and go back to my apartment. There may come a day when I only can WISH I could get out and (slow) jog ... I can now and I need to re-focus to be grateful for this.

You can find small (and not so small) 'win-wins' to counter the negativity you feel, which I believe is fear, exhaustion, anger. All understandable feelings. The key is how you relate to your feelings - and how you choose to assign different association (meanings) to your feelings, by how you choose to think - and feel.

Gena / Touch Matters

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?

You have asked a question that, I think, we all ask- whether consciously or unconsciously. For me, the spiritual monologue "corrects" thoughts that seem uncharitable- but I think these thoughts are natural. It's just that they don't help us. I like the corrective spiritual thoughts that have to do with love and joy- never guilt. I also have come to understand that I need to "spoil" myself from time to time, and I tell myself that I have a right to get a treat of some kind. Is there any way you could hire someone to help out? Even a kind of sitter who would allow you to get away on a spa weekend with friends... Bless you for doing what you're doing.

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 am so sorry about your son. You need outside help to come in and take some of the burden off of you. Homecare can be a good option. You do know that you can put your husband in a care facility for up to two weeks a year respite that's paid by Medicare. Doing that can give you a chance to rest, think, and make permanent plans for how your husband's care needs will be met.
Please try it because you need a break.

In the meantime, call a few homecare agencies. Ask your friends and family if they can help out with some things like the yard work, the animals, and the cleaning for now until you get hired help coming in.

I'm so sorry you lost your son. Your husband needs caregivers in the home or be placed so you are able to take better care of yourself.

Id get some in home help if you can. Even if its just for a few hours. And reserve some time to yourself if you can. Do not feel guilty for this. It is to recharge you to be able to handle your week. No one works any job 24/7. So why do you have to? They get time off. So you deserve it too. You deserve some life too. I think caregivers take on too much, get depressed, then don't want to take time for themselves. get more depressed, and dont want to go out etc. It's a vicious cycle. If you have to force yourself to do it, it will get easier.
I bet you have ditched any type of social life in order to deal with everything. If you can, reconnect with family, and friends. You might have to limit chat about your ailing husband unfortunately. They might not be emotionally equipped to handle too much talk of problems. Because they dont know what to do. Keep it light and talk of other things. It's a time be interested in them. It will take your mind off of things. It will recharge your batteries. Even if its just a phone call. Some friends are in for the deep conversations, and others are fair weather only for fun friends. It's ok to have fair weather friends, they are a fun distraction. They can't handle deep conversations. And they will think of you as a Debbie downer they want to avoid. That's ok. They can serve a purpose too. Not everyone can handle someone else's problems. They have their own.
You can also use here to vent, and find a caregiver group either local or online to chat with. That way you can discuss things that other caregivers understands, how draining and lonely it is. You might make some friends there too. A lot of people who can't get out, find online groups. It can be fun.
You are not being selfish for wanting time for yourself.
Can you get a company to do your mowing/weeding? A high school kid? There's a 2 hour period you may get to yourself.
Can you find local organizations that can give you a few hours off. Even if you just take a shower, make a nice meal for yourself, on a pretty plate, and watch your favorite show, or new movie? It might be enough for that day. Or meet someone for coffee. Or get your hair done. Or do a mile on the treadmill. Another thing that will help you get rid of some stress is to take the pets for a walk. Even if its 15 mins. It's enough to get you focused on something else, and get fresh air in your lungs. And the pets look foward to it.
You have to force yourself to find time for yourself. No one is going to give it to you. I got a VR and play online for an hour or 2. I forget everything and have fun. I havent left home. Good luck.

I'm so sorry. I forgot to offer my condolences for the loss of your son. Im sure the grief you have is playing a role in your negative feelings about everything. A Grief support group might help you process your emotions about your son and the ongoing loss of your husband.

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

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.

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.

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

Do you have help? When I cared for my father he qualified for caregivers to come in and give me a break. We also paid out of pocket for extra help. There is a program in my area called Seniors With Disabilities that helped us. You need to take breaks, it helps a lot.

Usually, negative feelings are an indicator of unmet needs or unmet desires. Start with "naming" the needs or desires that are being thwarted. Then, consider each one -
Is it a need/vital or desire/want?
How could the need be "met"? Brainstorm
Which ways are practical and can be implemented?
If a lot of desires are being thwarted, you may need to adjust your expectations for the future or find ways to meet the top couple of desires... while delaying the others for latter dates/times.

I also find it helps to look for and list all the positives of the situation. Sometimes, that is enough to help when negative attitude/feelings strike.

I'm so sorry you are feeling this way. I don't think you can get past it, continuing as you are.
You can get home care through a home health care agency. Attendant care will include some of the cleaning that you may be overwhelmed with, as well as meeting your husband's care needs.
If you don't feel like this is something you can afford, then call your local Medicaid office and see what services he is eligible for.
If having someone come in to help out doesn't offer enough relief for you, then it is time to find an assisted living or skilled nursing facility for your husband to stay. You can spend time with him there and be a loving wife, without the burden of doing everything yourself.

The more I read your post, I suspect you are feeling overwhelmed with the upkeep of a house with no help, probably frustrated that your husband is in the condition he's in. Have you considered downsizing? Live in a small condo or even assisted living apartment, if that suits your needs, with all maintenance provided.
Get out sometimes, whether to see friends, or just to take a walk or do something you enjoy. You will find you are happier to see him after taking a break from him.
And please find a therapist you can talk to. Don't let all your frustration simmer inside you until it explodes. When you let it fester, you are just making yourself more unhappy.

So sorry about your son.

It's hard to get past the negatives, but not impossible. Caregiving is TOUGH! So far I've only done it for my mom, so I can only imagine how much harder it is when it's your spouse.

You need some "me" time, girlfriend! It may seem ridiculous but you matter too and you have got to carve out time. How? By hiring people. I started with a cleaning lady. Then added a caregiver for a short time once a week to get my mom used to it then kept adding on more and more. I would have brought her to adult daycare if it wasn't a 30 minute drive from my house but you should look into it. Don't ask him what he wants - do what needs to be done to save your sanity whilst keeping him safe and cared for.

Is he still capable of doing things around the house at all? If so, push him to do as much as possible. Sorry if that's not going to work.

Best of luck.

My condolence on the loss of your son.

Sadly, as you mentioned, your caregiving journey is “going to get nothing but worse.” To get past the negativeness of your caregiving journey, you need to hire someone to help you before you become burnt out.

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?

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.

"housekeeper. I cook, taking care of pets"

Sorry but as a wife, did you not do the housekeeping and cook? I can see where now these would be overwhelming with caring for ur husband, though. Can u afford to hire someone to clean maybe once a month? At 74 I pretty much just maintain. Can you afford someone to mow the lawn, maybe every two weeks? My DH takes care of the outside so if he was not able to do it, it will not get done unless I hire someone. Cooking, take out on bad days.

Sorry, there really isn't too many "ups" when it comes to caregiving. Your life completely changes when u have to care for someone. If you can afford an aide for a day a week to have for yourself, do it. Go out with friends. Shop for you. Go to the library and sit alone and read. You may just have to let some of the housekeeping go.

Tabby, here are some suggestions:
1) Find out about Respite Care. It’s respite for the carer, not for the ‘patient’, and you could do with some right now. A month (even two weeks) on your own could let you focus on yourself for a while. Your husband may be sympathetic, but losing your adult son is a 'you' issue more than a 'shared' issue.
2) Think about your mid term options. If you live now in a house with a garden and pets, that may not work so well for you when there is no-one to share the DIY jobs with. Your husband probably likes the house, but is not getting much out of all the aspects that take a lot of work. An apartment, or Senior Living rental with other older people and organised activities, may be better for both of you right now. That’s very different from Assisted Living, with more options for both of you and less cost.
3) Think about your options and your finances in the long term. If your husband already needs care, and will need more in the future, it may work better if you separate your finances now - which does not imply divorce. Then your husband can pay for care from his share, before becoming eligible for Medicaid in the future. Your share can be saved for your eventual needs, without his current needs reducing you to future poverty.

The age differences mean that your situation and that of your husband are different now, and will be even more different soon. It is the right time to think about how to manage the next decade or three. It’s too late when you find out afterwards what you should have done now.

My husband is 12 years older than me, so I'm expecting and preparing emotionally that , their will be a day that I will be taking care of him..

But to do that while grieving a son. I can't even imagine.

Have you looked into grief counseling, support groups?

I'm just thinking maybe if you could think of the fact that taking care of your husband , takes the pain away from loosing your son. Maybe he, or just having him around can if you comfort. Maybe thinking that way will help get the negative off,

But you have to find time for yourself, to be able to focus and take care of your mental and physically healthy . And get you knee fixed

Vent anytime here,
As a wife of someone older than me and a mom of boys, my heart goes out to you.😔

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.

I'm venturing to guess that because your grief is still so fresh after losing your son recently, that that is playing a major part in your feeling "negative" towards your husband and the care is he is now requiring.
I hope first and foremost that you're seeing a grief counselor not only for loss of your son, but also for the anticipatory grief that you're feeling with your husband.
Grief presents itself in may different forms and stages, and must be dealt with in a healthy manner. So please get some help with that.

My late husband was 12 years older than me, and of course when we're younger we don't think much about the age difference. In my case my late husband had a a massive stroke 1 1/2 years after we married at the age of 48(I was 36), which left him permanently disabled, and with many deficits including loss of speech, unable to walk, read and write, and paralyzed on his right side. That of course led to many other health issues down the road including gran mal seizures, and eventually vascular dementia.
I too had to do everything around the house or hire people to do what needed to be done along with eventually going back to work full time.
And that was actually my saving grace as I loved what I did, and was very good at it. I also made sure that I was getting out with friends, going to church/Bible study, or just sitting outside to keep my attitude good.

I hope that you too are getting out and doing things that you enjoy. It may be hard for you now until you deal with your grief properly.
My husband died in 2020 at the age of 72 and I am grateful and honored that I was able to care for him until the end, "till death do us part."
Don't get me wrong, it wasn't always easy, but keeping my wedding vows first and forefront made it easier to keep them.

And remember that if your husbands care gets to be just too much for you, it is ok to find the appropriate facility to place him in where you can get back to just being his loving wife and advocate and not his burned out and negative caregiver.

I am so sorry that you lost your son. I can't imagine the pain you have in your heart, and then having to take care of your unhealthy husband. Please take care of yourself.

Along with the sage advice given - especially the part about separating wife from caregiver - consider if there's something you and hubby can do together that you both enjoy, that he can still enjoy, as a couple - new/current hobbies/crafts, sports/other events, binge watching (old) TV shows...

If hubby's of the right disposition to still look for fun or new things, that could help you see each other as yourselves and not carer and patient (with all the resentment that can create).

An interesting article on caregiving stated: " the key to happiness under such circumstances? For one thing, those who retain a healthy measure of satisfaction and contentment in their marriage view the illness as an assault not only on the ailing spouse but on the two of them as a couple. . .
 Additionally, research shows that couples who maintain a good relationship in the face of chronic illness accept their situation and learn effective ways to adapt to it. Many of the coping skills that they have learned echo the timeless advice found in the Bible."

The article is When a Spouse Has a Chronic Illness. You can read it on www.jw.org at https://bit.ly/SpouseChronicIllness. Maybe the suggestion about the lists will work for you two.

Take care, be well.