Initially, I thought 'caregiver' was someone you hired to work with your husband. Now, I presume it is you, his wife.
How to deal with it?
* Be self-compassionate. It is a very difficult situation in many ways (your time, energy, losing the man / husband as you knew him years, if not decades ago. It is a grieving process in slow motion.
* As you can, hire others so you get the respite / time off you really need. You cannot run on empty.
* Get support as you can in any groups that might help you. I do not know how your husband is disabled and/or if he had dementia. Look for Associations / church / Next Door - anywhere you can find some support.
* Get into therapy. This will / could be a good outlet to release / deal with your anger. You may (likely) feel both exhausted and STUCK - as you say hopeless. You are likely also depressed. It is a 'never ending cycle' day after day of being 'on' and likely (feeling/) having little to no choice.
Who wouldn't be anger and feel hopeless?
* You need to find ways to 'zone out' - leave. Even if 5-10 minutes every few hours ... an hour every day ... a day every week. You need to get away - for your own sanity and to renew ... which (I know) often doesn't feel like being renewed, but it is some time to shift from being 'on' all the time.
- Learn how to use these respites, i.e., shift your environment: --- go into the garden or go for a walk. --- write in a journal --- Take a relaxing bath --- Practice self-compassion (give yourself credit / acknowledgement for EVERYTHING YOU DO ... start with a daily list of '10'. "I acknowledge that am am doing ... When you review your list, you are or can focus on self-appreciation / self-compassion. --- Meditate. Even start with 1-2 minutes focused on your breathing. --- Get CDs or DVDs on meditation if needed. (Check out Rick Hanson Wed night Zoom meditations. I've been doing these for about a year now) --- And what you may not even know how to do ... figure out HOW TO HAVE SOME FUN.
Consider if it is time for placement - is having him at home just too much for you now?
* You deserve a life and tell yourself this, regularly. (from my point of view... ) There is a boundary (or should be) between being a faithful partner/wife and knowing you need to take care of yourself to feel whole. You deserve to be and feel this way. If you do not know this ... spend time acknowledging that you deserve to be a whole, functioning person. And, that taking care of yourself is THE ONLY WAY you can be fully present for your husband (and with respites, too). It is a matter of balance and figuring out how you can do this --- managing finances/caregivers/helpers. Even learning to ask for volunteers / help from neighbors or friends if this is hard for you. Do it.
Lastly, thank you for writing us. Many of us know how you feel.
It will help you to have / find an outlet for your anger and all your feelings.
* A therapist is really important. * Friends are good although many will give (unsolicited advice) - and/or won't know how to really support you even though they want to and think they are. The 'best' supportive friends are LISTENERS. To give you space to share and fall apart as / if you need to.
And, friends can take just so much.
"Use" your friends for 'fun' outings - a meal out ... a movie ... an event.
Everyone has a different tolerance level and/or ability in offering support. As well, a person's ability to feel compassion for another is different.
Know we care. Come back and check in... let us know how you are doing.
I am there myself. I try to find something to distract myself from all that is going wrong for a short time. This may be watching something on the television, doing a craft, turning up the radio while I run an errand, or going to the garden with my dog for a bit—anything to take a small mini-vacay. This may mean staying up a little later than normal too, to rest my mind before I rest my body. I am not perfect at it, but it helps.
First you are not alone. Educate yourself, read as much as you can about the disease and the behaviors, so things aren’t so shocking to you. Join a support group either online or in person or both.
Contact hospice for additional care…hospice is not just for end of life. Medicare will pay for hospice. A certified nurse assistant will come for bathing your husband, a registered nurse will come wkly to check vitals. You will have free access to a social worker and even a chaplain. They will come to your home. The social worker can speak with you about seeking additional care help and what your options are. There are even grants that help offset some of the costs of hiring additional help if needed.
Call your local Area Agency on Aging to get a hospice evaluation.
You begin by looking for as many resources you can find that might help.
Is your husband a Veteran? If so contact your local Veterans Assistance Commission. They can help determine if he qualifies for any benefits. It might help a little or a LOT.
Contact your local Senior Service Center. they typically have Social Workers that can help you apply for programs that will help.
Depending on your husbands condition if he qualifies for Hospice you would get a Nurse that would come in each week, more often if needed. The nurse would order any medications. The nurse would also order equipment that is needed. Hospital bed, and if you need help with transfers a Sit to Stand or a Hoyer Lift.
You would get a CNA that would come in 2 times a week to help with a bath or shower. The CNA would order supplies as well. All the incontinence supplies, briefs, pads, creams, ointments would be delivered.
You would have a Social Worker, Chaplain assigned as well. And you can request a Volunteer that can come and stay with your husband while you run errands. (they can not do "hands on" care so the time is generally limited to 3 to 4 hours.)
And you need to find a Support Group. You need to talk to your doctor about what is going on because being a caregiver WILL effect your health. And if possible you need to talk to a therapist just so you have a safe place to vent, bounce ideas off someone. Talking to a friend is good but you want an unbiased point of view, no judgement.
Lastly if you have not done so you need to talk to an Elder Care Attorney and make sure that all the important papers are done that need to be done.
Pixie, I saw this question last night and really didn't know how to answer it.
What Beatty said was right.
I also want to commend you for seeing that you have this internal anger, and need help with it.
Some people never see that and just let it fester.
Have you thought about therapy. I suspect it's hard for you to get out but a lot of things can be done on line.
Mindfulness and meditation may help. But what it sounds like you need the most is help for you to get out and get away.
Everyone would tell me I need a vacation. Honestly the thought of a vacation, actually depressed me more because I new I wouldn't want to come home. Mom and moms problems where still there when I came home.
Through all different avenues I've learned to be able to let go of what's going on at moms, and enjoy myself and worry less.
You need help, then you need to be able to walk out that door shut it and leave those problems behind the door.
Even get someone for a few days , by a good book, get an inexpensive hotel room for 2 nights, order in your favorite foods and just do you.
Pixie, you deal with your anger and hopelessness by making sure that you are getting out of the house regularly and doing things that you enjoy, like going to church, lunch with friends, shopping, taking a walk etc. You also deal with it by knowing what your limitations are, as we all have them. Then you can hire in-home help to give you some much needed breaks, and take some of the responsibility off of you, or you start looking into the appropriate facility for your husband where he will receive the 24/7 care he requires and you can get back to just being his wife and advocate. I also always recommend finding a local caregiver support group in your area that you can attend, as I know that the one I've attended since 2018, literally saved my life when I was caring for my late husband. It is so very helpful to be able to share and be honest with others that are going through similar things as you. Priceless actually. My husband died in 2020, and I still attend mine to be able to give hope and help to others still in the throes of caregiving. May the Lord bless you and keep you.
How to deal with it?
* Be self-compassionate. It is a very difficult situation in many ways (your time, energy, losing the man / husband as you knew him years, if not decades ago. It is a grieving process in slow motion.
* As you can, hire others so you get the respite / time off you really need. You cannot run on empty.
* Get support as you can in any groups that might help you. I do not know how your husband is disabled and/or if he had dementia. Look for Associations / church / Next Door - anywhere you can find some support.
* Get into therapy. This will / could be a good outlet to release / deal with your anger. You may (likely) feel both exhausted and STUCK - as you say hopeless.
You are likely also depressed. It is a 'never ending cycle' day after day of being 'on' and likely (feeling/) having little to no choice.
Who wouldn't be anger and feel hopeless?
* You need to find ways to 'zone out' - leave. Even if 5-10 minutes every few hours ... an hour every day ... a day every week. You need to get away - for your own sanity and to renew ... which (I know) often doesn't feel like being renewed, but it is some time to shift from being 'on' all the time.
- Learn how to use these respites, i.e., shift your environment:
--- go into the garden or go for a walk.
--- write in a journal
--- Take a relaxing bath
--- Practice self-compassion (give yourself credit / acknowledgement for EVERYTHING YOU DO ... start with a daily list of '10'. "I acknowledge that am am doing ... When you review your list, you are or can focus on self-appreciation / self-compassion.
--- Meditate. Even start with 1-2 minutes focused on your breathing.
--- Get CDs or DVDs on meditation if needed. (Check out Rick Hanson Wed night Zoom meditations. I've been doing these for about a year now)
--- And what you may not even know how to do ...
figure out HOW TO HAVE SOME FUN.
Consider if it is time for placement - is having him at home just too much for you now?
* You deserve a life and tell yourself this, regularly.
(from my point of view... ) There is a boundary (or should be) between being a faithful partner/wife and knowing you need to take care of yourself to feel whole. You deserve to be and feel this way. If you do not know this ... spend time acknowledging that you deserve to be a whole, functioning person. And, that taking care of yourself is THE ONLY WAY you can be fully present for your husband (and with respites, too). It is a matter of balance and figuring out how you can do this --- managing finances/caregivers/helpers. Even learning to ask for volunteers / help from neighbors or friends if this is hard for you. Do it.
Lastly, thank you for writing us. Many of us know how you feel.
It will help you to have / find an outlet for your anger and all your feelings.
* A therapist is really important.
* Friends are good although many will give (unsolicited advice) - and/or won't know how to really support you even though they want to and think they are. The 'best' supportive friends are LISTENERS. To give you space to share and fall apart as / if you need to.
And, friends can take just so much.
"Use" your friends for 'fun' outings - a meal out ... a movie ... an event.
Everyone has a different tolerance level and/or ability in offering support. As well, a person's ability to feel compassion for another is different.
Know we care. Come back and check in... let us know how you are doing.
Gena / Touch Matters
Contact hospice for additional care…hospice is not just for end of life. Medicare will pay for hospice. A certified nurse assistant will come for bathing your husband, a registered nurse will come wkly to check vitals. You will have free access to a social worker and even a chaplain. They will come to your home.
The social worker can speak with you about seeking additional care help and what your options are. There are even grants that help offset some of the costs of hiring additional help if needed.
Call your local Area Agency on Aging to get a hospice evaluation.
Is your husband a Veteran? If so contact your local Veterans Assistance Commission. They can help determine if he qualifies for any benefits. It might help a little or a LOT.
Contact your local Senior Service Center. they typically have Social Workers that can help you apply for programs that will help.
Depending on your husbands condition if he qualifies for Hospice you would get a Nurse that would come in each week, more often if needed. The nurse would order any medications. The nurse would also order equipment that is needed. Hospital bed, and if you need help with transfers a Sit to Stand or a Hoyer Lift.
You would get a CNA that would come in 2 times a week to help with a bath or shower. The CNA would order supplies as well. All the incontinence supplies, briefs, pads, creams, ointments would be delivered.
You would have a Social Worker, Chaplain assigned as well.
And you can request a Volunteer that can come and stay with your husband while you run errands. (they can not do "hands on" care so the time is generally limited to 3 to 4 hours.)
And you need to find a Support Group.
You need to talk to your doctor about what is going on because being a caregiver WILL effect your health.
And if possible you need to talk to a therapist just so you have a safe place to vent, bounce ideas off someone. Talking to a friend is good but you want an unbiased point of view, no judgement.
Lastly if you have not done so you need to talk to an Elder Care Attorney and make sure that all the important papers are done that need to be done.
What Beatty said was right.
I also want to commend you for seeing that you have this internal anger, and need help with it.
Some people never see that and just let it fester.
Have you thought about therapy. I suspect it's hard for you to get out but a lot of things can be done on line.
Mindfulness and meditation may help. But what it sounds like you need the most is help for you to get out and get away.
Everyone would tell me I need a vacation. Honestly the thought of a vacation, actually depressed me more because I new I wouldn't want to come home. Mom and moms problems where still there when I came home.
Through all different avenues I've learned to be able to let go of what's going on at moms, and enjoy myself and worry less.
You need help, then you need to be able to walk out that door shut it and leave those problems behind the door.
Even get someone for a few days , by a good book, get an inexpensive hotel room for 2 nights, order in your favorite foods and just do you.
Best of luck to you
You also deal with it by knowing what your limitations are, as we all have them.
Then you can hire in-home help to give you some much needed breaks, and take some of the responsibility off of you, or you start looking into the appropriate facility for your husband where he will receive the 24/7 care he requires and you can get back to just being his wife and advocate.
I also always recommend finding a local caregiver support group in your area that you can attend, as I know that the one I've attended since 2018, literally saved my life when I was caring for my late husband.
It is so very helpful to be able to share and be honest with others that are going through similar things as you. Priceless actually.
My husband died in 2020, and I still attend mine to be able to give hope and help to others still in the throes of caregiving.
May the Lord bless you and keep you.