I agree with others. Contact Hospice. I did this for my Mom and Father in Law. They provide all supplies, medicines, hospital bed if necessary, bath aids, nurse comes weekly or more often if you need. The company I used provided a massage therapist twice a month, also 5 days of respite monthly. It took me awhile to wrap my head around Hospice because I have always thought it was for the very end but that not the case. At least talk to a Hospice Company. They also have social workers that can help with transferring to a facility if you decide to do that. Take care of yourself too!
Definitely reach out to your local hospital social worker. They can put you in touch with all kinds of programs and assist you with applications. If Medicaid is needed and there are assets such as a home, retirement money, life insurance, then they should be able to refer you to a good elder law attorney to handle the process. If you belong to a church, see if anyone would volunteer time so you can catch a break. I'm only 43 taking care of both parents in their 80s and it's a lot. Dad has multiple cancers, mild dementia, legally blind, chronic catheter, and incontinence from rectal cancer surgery. Mom broke her hip in April this year and is still trying to gain strength along with diabetes, CHF and Lymphoma.
You don't need to feel guilty for taking time for yourself. I used to but then it got down to my health (lots of stress) or my father going into a home. He went into a nursing home in May and that was the hardest decision I've had to make because they don't care for him like I would but I'm on them - asking questions, making sure he's got what he needs. He's been on Hospice since November 2020 and this week I'm bringing him back home so he can be with family as he is in his final decline.
If you do end up with one or both in a home, make sure to be present so they know you're an active family member in their care. Don't be afraid to push them a little -gently as every home is understaffed right now - but sometimes they need to be reminded that this is someone that's loved.
If they are able to take care of themselves, schedule “off” time for yourself every day. They may not always be able to care for themselves, so appreciate this freedom, if you have it.
if they do not have the capacity to care of themselves, it is still imperative that you have breaks. If they are able to afford some care, hire someone to come in so you can have some time off. Fully utilize this service by having the caretaker handle showering, exercising or take one meal, something more than just “down time” watching TV.
If there is not money for this, network to find someone local who is doing the same thing in their family. Give the elders “social time” together while one of you has a break and rotate.
Hand to be a Caregiver. INatalie cameras so you can see what's going on 24 7 why you're away. Hire Caregiver help to give yourself time off for yourself.
It’s kind of like when you leave your baby with a sitter for the first few times. Your caregiving job is to anticipate their needs and know the signs of whatever need might pop up. Whoever fills in for you aren’t going to do it as well as you. Thus, stress and anxiety that your LO’s needs aren’t going to be met.
Except, it’ll be fine. It’s fine. I learned over the years that stressing and worrying about it only made me feel like a micromanager, and when I got time off, I never enjoyed it.
The key to not stressing about it, is to not think about it. You need distraction. Maybe a yoga class, go see a movie, or play music that steers your direction while you shop (beachy-summertime music) will push your mind in another direction instead of worrying.
This takes practice, so don’t be worried if it takes you a while.
Barbara, so sorry you are in the midst of caring for both your husband & sister. You are brave & wise reaching out & asking for help on this forum. Continue to ask for help where you can (other family, friends, church, organizations).
Grandma1952 shares good advice: "accept that no one will do things exactly as you do". That can be a stumbling block for many caregivers in not asking for help. It is better for you to get some respite & have someone "adequately" take care of your loved ones, than for you too get sick or worse and not be around to help at all. Please know I say this with compassion & concern.
Here is a link re: getting respite care that may help: https://www.helpguide.org/articles/caregiving/respite-care.htm
If you haven't already, check out some virtual support groups in your area that may be able to offer specific resources that could be helpful & also receive compassionate validation from others who understand caregiving challenges. God bless you!
Find somebody you trust to watch them for you while you are "out." If this is out of the question, install "nanny cameras" so you can check in on them.
I don't see where u can leave him and leaving your sister to watch him for any length of time. If it were me, one would go to LTC. If husband is 82 you can't be far behind. Taking care of him is a 24/7 job. That is hard for one person let alone adding another person who needs care. This is too much for you.
Since DH has no idea who ur, I may place him. Eventually sister would follow when her care gets to be too much.
Do they live in the same house, or do you go from one to the other to care for them? How much are they able to do on their own, even if it is hard to do it? Take inventory and make a list of things they CAN do. Also, make another list of things that they need which can WAIT until you get there. Then, PLAN your day and week around your lists. You can change the lists based on what works and doesn't work. Also, do some research and find out what other resources are available in your location for other people to do some of the tasks you have to do for them. In Riverside, we have an Office on Aging which sends out a social worker who helps you analyze your needs and gives suggestions and referrals. Most health plan hospitals also have social workers who can give advice on this. Get as many people's opinions and help as possible. Why try this alone when there are people whose job it is, is to help with referrals and advice?
You have taken on a lot my dear woman. More than anyone should. I certainly understand you wanting to take care of your husband, as I took care of mine for many years, BUT, there comes a point when you must also make yourself a priority, and it sounds that perhaps is the point you are at now. If you don't start taking care of yourself, you will end up being in the statistics where the caregiver dies before the one(s) being cared for. I'm sure your husband and your sister would never want that. I agree with Grandma1954, that you should look into getting hospice involved, but keep in mind that even if you do that, 99% of your loved ones care will still fall on you, so realistically you may either have to have one or both of them placed in the appropriate facilities, or you must hire some full-time help to come in to give you a break. You must start getting away and doing little things for yourself, like going to church, lunch with friends, walking around your neighborhood, or just sitting outside with a glass of wine and a good book. You'll be amazed if you can start with some little things, how much better you will feel, and how it will rejuvenate your soul and help you on this journey. You may also want to "Google" to see if there is a local caregivers support group in your area, as I have found my support group to be a Godsend. Most of course are still meeting on Zoom, but being able to share with fellow caregivers, who are going through similar things or have been through similar things is invaluable. Please start taking steps today to make yourself a priority.
This is one of the difficult things when caring for someone. The hard part for you will be to allow someone to care for them. You have to accept that “no one will do things exactly the way you do” “no one will do things perfectly” Once you accept that letting go and letting someone take over care will be easier. Start by getting someone in to help YOU. A little housecleaning, laundry. Let the caregiver “shadow” you for a day or two. Once you are comfortable take an hour and run to the store. Next time go for a bit longer.
Because this is me responding I have to also suggest Hospice. It is quite possible that both would be eligible for Hospice. You would get supplies, equipment and medications delivered. You would have a Nurse that would visit weekly. A CNA that would come a couple times a week to bathe, dress them as well as reorder supplies. And Medicare requires that a certain % of volunteer hours for helping patients and families. (What I am getting at is that you could request a Volunteer to come and sit/stay with your husband and your sister while you go out for a bit. And Medicare also covers Respite for Hospice patients so you could get a longer break if you wished.
If you belong to a church, see if anyone would volunteer time so you can catch a break. I'm only 43 taking care of both parents in their 80s and it's a lot. Dad has multiple cancers, mild dementia, legally blind, chronic catheter, and incontinence from rectal cancer surgery. Mom broke her hip in April this year and is still trying to gain strength along with diabetes, CHF and Lymphoma.
You don't need to feel guilty for taking time for yourself. I used to but then it got down to my health (lots of stress) or my father going into a home. He went into a nursing home in May and that was the hardest decision I've had to make because they don't care for him like I would but I'm on them - asking questions, making sure he's got what he needs. He's been on Hospice since November 2020 and this week I'm bringing him back home so he can be with family as he is in his final decline.
If you do end up with one or both in a home, make sure to be present so they know you're an active family member in their care. Don't be afraid to push them a little -gently as every home is understaffed right now - but sometimes they need to be reminded that this is someone that's loved.
Good luck and please take care of you!
if they do not have the capacity to care of themselves, it is still imperative that you have breaks. If they are able to afford some care, hire someone to come in so you can have some time off. Fully utilize this service by having the caretaker handle showering, exercising or take one meal, something more than just “down time” watching TV.
If there is not money for this, network to find someone local who is doing the same thing in their family. Give the elders “social time” together while one of you has a break and rotate.
These breaks are healthy gor everyone!
INatalie cameras so you can see what's going on 24 7 why you're away.
Hire Caregiver help to give yourself time off for yourself.
Except, it’ll be fine. It’s fine. I learned over the years that stressing and worrying about it only made me feel like a micromanager, and when I got time off, I never enjoyed it.
The key to not stressing about it, is to not think about it. You need distraction. Maybe a yoga class, go see a movie, or play music that steers your direction while you shop (beachy-summertime music) will push your mind in another direction instead of worrying.
This takes practice, so don’t be worried if it takes you a while.
Grandma1952 shares good advice: "accept that no one will do things exactly as you do". That can be a stumbling block for many caregivers in not asking for help. It is better for you to get some respite & have someone "adequately" take care of your loved ones, than for you too get sick or worse and not be around to help at all. Please know I say this with compassion & concern.
Here is a link re: getting respite care that may help: https://www.helpguide.org/articles/caregiving/respite-care.htm
If you haven't already, check out some virtual support groups in your area that may be able to offer specific resources that could be helpful & also receive compassionate validation from others who understand caregiving challenges. God bless you!
https://tchhsa.org/eng/index.cfm/human-services/senior-information-assistance/?
One senior taking on all the needs for two very ill people seems like an impossible task.
What are your sister's resources like? Can she afford to bring help in? Is she on Medicaid?
Since DH has no idea who ur, I may place him. Eventually sister would follow when her care gets to be too much.
There are ways to protect your 50% of the assets.
If you don't start taking care of yourself, you will end up being in the statistics where the caregiver dies before the one(s) being cared for. I'm sure your husband and your sister would never want that.
I agree with Grandma1954, that you should look into getting hospice involved, but keep in mind that even if you do that, 99% of your loved ones care will still fall on you, so realistically you may either have to have one or both of them placed in the appropriate facilities, or you must hire some full-time help to come in to give you a break.
You must start getting away and doing little things for yourself, like going to church, lunch with friends, walking around your neighborhood, or just sitting outside with a glass of wine and a good book. You'll be amazed if you can start with some little things, how much better you will feel, and how it will rejuvenate your soul and help you on this journey.
You may also want to "Google" to see if there is a local caregivers support group in your area, as I have found my support group to be a Godsend. Most of course are still meeting on Zoom, but being able to share with fellow caregivers, who are going through similar things or have been through similar things is invaluable.
Please start taking steps today to make yourself a priority.
The hard part for you will be to allow someone to care for them.
You have to accept that “no one will do things exactly the way you do” “no one will do things perfectly”
Once you accept that letting go and letting someone take over care will be easier.
Start by getting someone in to help YOU. A little housecleaning, laundry. Let the caregiver “shadow” you for a day or two. Once you are comfortable take an hour and run to the store. Next time go for a bit longer.
Because this is me responding I have to also suggest Hospice.
It is quite possible that both would be eligible for Hospice. You would get supplies, equipment and medications delivered. You would have a Nurse that would visit weekly. A CNA that would come a couple times a week to bathe, dress them as well as reorder supplies. And Medicare requires that a certain % of volunteer hours for helping patients and families. (What I am getting at is that you could request a Volunteer to come and sit/stay with your husband and your sister while you go out for a bit. And Medicare also covers Respite for Hospice patients so you could get a longer break if you wished.