Bless you. I'm so sorry you are going through this, however, one resource may be reaching out to your local Area Agency on Aging and inquire if they offer a respite grant program. These programs allow caregivers to receive additional in-home care and overnight respite or schedule short-term stays for their loved ones at elder care facilities. The Area Agency on Aging may also be a to assess you and your wife for additional services to help you both.
Stable does not mean self sufficient. My husband is stable but incontinent, falls periodically, extremely moody, totally reliant on my presence, ...Anything can happen at any minute.
OH OH... if the caregiving is killing you .... then what happens when you are not around ? Time for home health care so help you out and give you a break.
Contact Care Patrol online to see if they are in your area. My Rep truly saved my life. they will assess your loved one's needs, help you arrange home care and guide you through the Nursing Home morass.
To begin with, your attitude is what is ruining your life, not your situation. You have to use the "make lemonade" approach. You obviously care for your daughter so you are a compassionate person..., otherwise you would have just left, years ago! I speak with authority because I am nearly in your exact same situation. I am 81 and my wife is 83. She has Alzheimers and several other infirmities that require my daily attention, but she can still mostly care for herself and she can communicate well except her memory keeps worsening. My advice is make a life for yourself utilizing your computer, phone, hobbies or anything you can. I have felt sorry for myself often, and then I think...so many people have it so much worse... so just enjoy your lemonade..(with a dash of vodka if it helps) :-)
Clearly there are some similarities, but the OP has not provided a lot of detail, so it is a bit presumptuous to say your situations are almost exactly the same.
You also don't know this man or what he has to do to care for his wife or even how long he has been doing the care, so telling him he has a bad attitude is a bit presumptuous as well, if not outright rude.
Your description of your wife's capabilities does indeed sound like you have it so much better than others. Never would I consider care for anyone with dementia a snap, but it varies so widely what one has to deal with, often depending on the type of dementia and how far along the journey the person is. Some forms of dementia are brutal, for both the person and the care-giver. Some just bring out the worst in a person. So, until we can learn more about this situation, we shouldn't assume anything.
Until OP is willing to give us more information, we don't know what the conditions are for him. Just stating he provides care 20 hours/day sounds like his wife is quite a handful (and certainly not "stable")! One needs MORE than 4 hours of sleep/day AND one also needs time to regroup as well (or to go make that lemonade.)
I got tired just thinking about 20 hours of caregiving. So sorry for what you are going through. As a Certified Assisted Living Administrator, I can assure you, as have many people on the forum have already done, your wife does NOT have to be physically disabled to move into a Memory Care unit of an assisted living. Lots of people are perfectly healthy and active.......... they just don't want to worry about replacing the roof, mowing the lawn or fixing dinner. You didn't indicate your financial resources, but if you are able to afford it, you might want to research CCRCs (Continuing Care Retirement Communities). These are health care continuum campuses where you can move through any number of health stages as you age because they encapsulate all major living options (independent living, assisted living, memory care, skilled nursing and long term care). The drawback for many of us is the fact that most require a hefty entry fee (depending on the facility, this can be anywhere from 100k -250k) as well as the monthly rental fees. In many instances, a husband/wife is in independent living while the spouse needs more or specialized care moves into the assisted living. They can still have lunch or go to the in facility movies together. If your daughter is active part of your lives, tell her your thoughts as she may wish to be involved in helping your select a campus. I would suggest that you select a campus that is run by an organization that has been in the field for some time and that has a very sound financial status. Also question (and get the answer in writing) what happens if a resident runs our of money after two or three years. Do they have a foundation that will continue to make payments so that you can continue to live there if your private funds are depleted?
If the entrance fee requirement is not to your funding, Assisted Livings (AL) often have MC care units for those who require a little more specialized activities and help. Your wife might do well in one of those and when you visit you could be a loving caring husband instead of overworked, tired person who hates his life. In searching for an AL I would still ask the above question about financial stability. Remember that Medicaid beds in ALs are few and far between. Also keep in mind that if your wife's medical needs ever becoming more than an AL can handle, she might be required to move to a skilled nursing facility.
I wish you luck and peace on this difficult journey
You seem to be a bit knowledgeable about CCRCs, perhaps you can explain what they do with that "entrance fee?"
My mother used to often go to the free tours and luncheon these places in her area would hold. A few times she mentioned moving to AL, when she felt the time was right. Unfortunately dementia came along first, and any attempt to just ask questions or discuss AL was met with derision. She would NEVER set foot in THOSE places!
We did try the aide in-home, only 1 hr/day with plan to increase as needed. She was only in the early stages and didn't really need "help." We never got past that - less than 2 months later she refused to let them in. So Plan B was to find a MC place. I focused on those in my area, knowing full well that I would be the one visiting, managing, ordering, delivering, etc. There were 3 in the next town. One was CCRC, but I never even inquired there - that "fee" was a gate.
That said, the place chosen was newly rebuilt and had IL, AL and MC, so one could transition to other levels of care, just like these CCRCs talk about. It was a non-profit and was less expensive with a better room/setup than another place my YB found (3 years after the move, the monthly fee had finally passed the original cost at that other place, and mom had a private room, where the other was 2 br with shared bath - THAT would never fly!)
Mom moved right to MC, no IL or AL. She lived there almost 4 years and I can't say enough good things about it!
They also had a foundation/legacy to assist those who outlive their funds. After mom had a stroke around Labor Day, the nurse informed me that mom would NOT have to move to a NH. She could stay to the end. That lifted a huge burden off my shoulders. I should think only someone who required specialized nursing care would need to move, as they really don't provide that kind of care in MC, but some places won't keep residents who are declining rapidly.
Anyway, I have been curious what that "fee" is used for, since the resident is still required to pay a monthly fee to live there. The only "fee" we had to pay was no where near that amount (depending on the fees you suggested, 2-5% of those!), and was used for assessment and admin stuff. Even that seemed a bit much, but it wasn't $250K!
I will also say that I've been VERY pleased with this place, the staff and the care provided. I've already told my kids that if I ever need a care facility, this is where I want to go! Another good point - they did an EXCELLENT job keeping the virus out. To date only 2 staff members tested positive, the first was not until October. Not one resident in the entire complex was ever infected. The other facilities nearby DID have infections and several deaths.
if you look and ask social services, SCAN. MEDICARE, insurance, etc... this may not completely fall into your kid's lap,,, but have you had a serious talk with your daughter? What does she think or feel? Ask her for some help... you helped raised her,,, she should be willing to help out..at least get her opinion... do not leave her out of the looop
You need a total family discussion with wife, you, child, and other family members if possible... do not leave anyone out of this... get all the help you need from family, insurance, doctor, social services, medicare, scan.. life insurance. etc
Imho, it may not fall all on your shoulders. Family discussion is required. I have firsthand knowledge of this with a sister in law who is 4 years into an illness, now can't walk nor eat and the family "has had a hard time talking to the doctor." Do NOT wait to come up with a plan.
k5866752 - Any thoughts? Answers for some of the questions we have posed?
You DO have options which don't have to be you leaving or your daughter taking on this role. Knowing you can't do this care, you need to explore any/all options. Your daughter's help would be advisable. Two people searching, asking, exploring and understanding is better than one.
Getting some help caring for your wife for you while you explore the options is important. You can't function on 4 hours of sleep. Either find an agency to hire aides or find an AL/MC that can take her for respite, a week or two. Find EC atty to help with what options you have and to protect your assets. Those who are not informed think they have to pay for all the care and will end up broke and homeless - there ARE other options.
Let us know how you are doing and what plans you have made to move forward.
Hello. After reading your concern,you have already stated what you need, Answer,HELP ASAP...... and this is okay.
First step, now take action before you decline physically. And it might happen suddenly upon you. Then who will care for your wife,
Start immediately a plan. Call Government agencies in your state. Most state office can be a great reference, helping you. Definitely will direct you to other resources.
Please don’t go into denial, caretaking is a hard, and very emotionally journey. You need your health and strength to make it. I am on the journey up and down with my BF.
Bested of health to you and your wife! Stay with this web site it will be a excellent resource of positivity!
Fight the good fight of “Faith” try meditation ,pray to a higher source,God....
they will assess your loved one's needs, help you arrange home care and guide you through the Nursing Home morass.
Clearly there are some similarities, but the OP has not provided a lot of detail, so it is a bit presumptuous to say your situations are almost exactly the same.
You also don't know this man or what he has to do to care for his wife or even how long he has been doing the care, so telling him he has a bad attitude is a bit presumptuous as well, if not outright rude.
Your description of your wife's capabilities does indeed sound like you have it so much better than others. Never would I consider care for anyone with dementia a snap, but it varies so widely what one has to deal with, often depending on the type of dementia and how far along the journey the person is. Some forms of dementia are brutal, for both the person and the care-giver. Some just bring out the worst in a person. So, until we can learn more about this situation, we shouldn't assume anything.
Until OP is willing to give us more information, we don't know what the conditions are for him. Just stating he provides care 20 hours/day sounds like his wife is quite a handful (and certainly not "stable")! One needs MORE than 4 hours of sleep/day AND one also needs time to regroup as well (or to go make that lemonade.)
If the entrance fee requirement is not to your funding, Assisted Livings (AL) often have MC care units for those who require a little more specialized activities and help. Your wife might do well in one of those and when you visit you could be a loving caring husband instead of overworked, tired person who hates his life. In searching for an AL I would still ask the above question about financial stability. Remember that Medicaid beds in ALs are few and far between. Also keep in mind that if your wife's medical needs ever becoming more than an AL can handle, she might be required to move to a skilled nursing facility.
I wish you luck and peace on this difficult journey
My mother used to often go to the free tours and luncheon these places in her area would hold. A few times she mentioned moving to AL, when she felt the time was right. Unfortunately dementia came along first, and any attempt to just ask questions or discuss AL was met with derision. She would NEVER set foot in THOSE places!
We did try the aide in-home, only 1 hr/day with plan to increase as needed. She was only in the early stages and didn't really need "help." We never got past that - less than 2 months later she refused to let them in. So Plan B was to find a MC place. I focused on those in my area, knowing full well that I would be the one visiting, managing, ordering, delivering, etc. There were 3 in the next town. One was CCRC, but I never even inquired there - that "fee" was a gate.
That said, the place chosen was newly rebuilt and had IL, AL and MC, so one could transition to other levels of care, just like these CCRCs talk about. It was a non-profit and was less expensive with a better room/setup than another place my YB found (3 years after the move, the monthly fee had finally passed the original cost at that other place, and mom had a private room, where the other was 2 br with shared bath - THAT would never fly!)
Mom moved right to MC, no IL or AL. She lived there almost 4 years and I can't say enough good things about it!
They also had a foundation/legacy to assist those who outlive their funds. After mom had a stroke around Labor Day, the nurse informed me that mom would NOT have to move to a NH. She could stay to the end. That lifted a huge burden off my shoulders. I should think only someone who required specialized nursing care would need to move, as they really don't provide that kind of care in MC, but some places won't keep residents who are declining rapidly.
Anyway, I have been curious what that "fee" is used for, since the resident is still required to pay a monthly fee to live there. The only "fee" we had to pay was no where near that amount (depending on the fees you suggested, 2-5% of those!), and was used for assessment and admin stuff. Even that seemed a bit much, but it wasn't $250K!
I will also say that I've been VERY pleased with this place, the staff and the care provided. I've already told my kids that if I ever need a care facility, this is where I want to go! Another good point - they did an EXCELLENT job keeping the virus out. To date only 2 staff members tested positive, the first was not until October. Not one resident in the entire complex was ever infected. The other facilities nearby DID have infections and several deaths.
You DO have options which don't have to be you leaving or your daughter taking on this role. Knowing you can't do this care, you need to explore any/all options. Your daughter's help would be advisable. Two people searching, asking, exploring and understanding is better than one.
Getting some help caring for your wife for you while you explore the options is important. You can't function on 4 hours of sleep. Either find an agency to hire aides or find an AL/MC that can take her for respite, a week or two. Find EC atty to help with what options you have and to protect your assets. Those who are not informed think they have to pay for all the care and will end up broke and homeless - there ARE other options.
Let us know how you are doing and what plans you have made to move forward.
Answer,HELP ASAP...... and this is okay.
First step, now take action before you decline physically. And it might happen suddenly upon you. Then who will care for your wife,
Start immediately a plan. Call Government agencies in your state. Most state office can be a great reference, helping you.
Definitely will direct you to other resources.
Please don’t go into denial, caretaking is a hard, and very emotionally journey. You need your health and strength to make it. I am on the journey up and down with my BF.
Bested of health to you and your wife! Stay with this web site it will be a excellent resource of positivity!
Fight the good fight of “Faith” try meditation ,pray to a higher source,God....