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My wife needs assistance 24X7 and I am getting too old to help her. These assisted living facilities would be too costly and separate us!!

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Have you visited an Eldercare attorney to discuss how you can afford this?
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I agree with Barb about the attorney, and also suggest you call the Area Agency on Aging in your area or the State Dept of Aging. They can suggest resources for you to lighten your load. A home care helper could do most of the errands you're doing now.

Incidently, some ALF have shared rooms where a couple can reside together. Many also don't charge extra for the spouse.
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JoAnn29 May 2021
They may not for the room but they will for each of their care and he seems to need it as much as her.
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At this point, I have no idea how you can fix it if you can't work. Your wife now gets half of your SS and when you pass, she will get the other half. In my instance, I get 800 my husband gets 1600. If he passes I get half of his giving me $1600 total with $800 dropping off.

Your wife will need 24/7 care and if can't afford an Assisted Living will need to be placed in a Longterm Care facility on Medicaid with her SS and pension going towards her care. She has a lot of health problems and placing her may become sooner than later because you also suffer from a number of health problems.

My parents and DHs were working class people living from pay to pay raising 4 and 3 children. My Dad went on disability at 52 so no money being saved there. And FIL saved some money but not enough to keep my MIL in an AL. I had to place my Mom on Medicaid. MIL passed before we had to place her.

The time for planning for old age should have been years ago. My DH bought bonds. I worked and we saved. We lived well but simply. Didn't deprive ourselves but also didn't overspend. We invested some money. So far our health is good but you never know what life will bring.
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With your wife's diagnosis she would qualify for Hospice.
You would get the equipment that you need to safely care for her so you do not hurt yourself. A Sit to Stand or a Hoyer Lift would save your back, legs, knees. If you do not want Hospice her doctor could order the equipment that is needed. The big advantage with Hospice is you would have a CNA that would come in several times a week to bathe your wife, order supplies and do some light housework if needed., You would also be able to request a Volunteer that could come stay with her while you get out and get some things done for yourself. A Volunteer can also do some light housework as well. (some laundry, take out the trash you just need to talk to the Nurse that would be assigned and tell them what you need.) You would also have a Social Worker that you could talk to about some of these issues and concerns.
I agree with the others to consult with an Elder Care Attorney.
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disgustedtoo May 2021
Hospice can certainly bring in some help, both medical equipment and personnel.

Depending on income, OP and/or wife may qualify for in-home assistance through Medicaid. SW with Hospice may be able to point them where they can get help with applying (or even review to see if they are in the income bracket.)

A definite yes on at least a consult with EC atty. Some offer a free initial consult (limited time, so have all questions drafted, take notes and see several who might offer a free consult.)
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I am so sorry. Your question of how to fix this leaves me feeling powerless and sad, because I know you are smart enough to know you have thought of pretty much everything. This is what comes to so many, and it is so difficult to think about. I wish you and your wife the very best.
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Social security is determined by whichever spouse receives the highest payout. You do not receive yours and 1/2 of your spouse’s income. Since his is higher - you would receive his $1600 and lose yours entirely. In this case the dollar figure is the same however for many who are living on both incomes, death results in loss of one.
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JoAnn29 May 2021
If ur talking to me there are two ways to look at this. When I received SS my DH was already receiving his. I was told then that basically because I was already receiving half of his from my work experience that mine would drop off and I would receive his upon his passing.

But another poster explained it differently. I worked and was receiving 800 which was already half of DHs. Upon his death, I keep my 800 and get 50% of his which is also $800 which still comes up to the 1600. This is how it was described to a recently widowed cousin.

If my husband had been making 2000 a month my 800 would have been brought up to 1000.
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Until you can explore all the options (EC atty, Medicaid, Hospice, ALs, etc), is there enough income to at least hire some part time help, to assist you (or rather her)? If they can do the "heavy" lifting, bathing, etc, that relieves you from the grueling work. Preparing meals should be easier when you have another person keeping tabs on her and helping her. If possible or necessary, hire someone, also part time, to come do any heavy cleaning or laundry.

Also, take advantage of having a person watching over your wife to get some "ME" time, even if it's just a walk, drive to pickup some take out or sit in a park for half an hour. You DO need to take care of you as well.
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I agree you should contact your Area Council on Aging (or whatever it's called in your area) ask them to come and evaluate you and your wife's needs.

In addition if your income is low enough you may qualify for a legal aid from your city or county - see if there is one in your area. They may be able to help you sort out the financials.

It sounds as if you both could be placed in a facility to care for you. If you don't have money for AL check to see if you both qualify for Medicaid - the 2 places I mentioned above should be able to assist you in getting this done. Then depending on the needs for both of you, you may qualify for in home help or placement in a LTC facility where you should be able to stay together and receive the assistance you both need.

As far as assisted living goes - my parents shared an apartment until my father was too weak and had to be moved to LTC. Where my mother lives there is a 2nd person fee of about $150/mo that was added to the amount paid by the primary. But I agree, AL is costly.

Good luck to both of your.
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If you pass first your wife will get the larger of the two SS amounts. When Dad died Mom’s SS payment was raised to be equal to what his was. The same applies to you if your wife passes, you will receive the larger of the 2 amounts.
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If something happened you first, your wife's care would probably require NH care if living with relatives is no an option. However it sounds like you need some help now.

Is there a child/grandchild who has one working spouse and would be interested in living with you? Make a deal - the stay a home spouse cares for her and in the end they get the home to live in or sell by way of Lady Bird deed (aka transfer on death deed). Then house transfers immediately upon death, never part of the estate/probate - other heirs can only fight over what remains in estate. Such as other property, personal items, etc.

Explain your dilemma to your doctor and ask if your current health conditions would qualify you to meet medical needs of a NH. Both of you could go now. You'd have help with her care, you'd be in same room together, and you'd have your own needs taken care of. Assisted living is very expensive and not everyone has the money for that kind of facility care. Do what you can afford and would allow you to stay together.

Or sell the house and use that to pay for assisted living for as long as it lasts. Most of those facilities will help you apply and transition over to NH (possibly Medicaid) when the money runs out. Whatever you do, don't hang on to a house just to leave it to relatives that aren't currently helping you. Many people save all their life for 'old age' and then hesitate to use it for that because they want to leave something for their kids. Use it to live out your days getting the appropriate help you need.
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How old are you? Sometimes there is time to plan, sometimes there is only finding the optional solutions.
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If you do not have sufficient resources and both need care, you may have to apply for Medicaid placement in a facility. I do not know if Medicate could place you somewhere together
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Call the mid America of aging .they will help .you out.i called for myself.and the lady, I talk to gave what I need to do. And the places .she told me, that the doctor main.one has to fill out the referral form.and the other letters from the doctor.thr places she told me ,that the places they to be certified with medicade.so call the mid America council of aging. They will help you .with your wife.i have vascular dementia border line progressive stage.
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Jean1808 May 2021
Great reply and referral, and bless you for your courage! May I ask, with the dementia, do you have paranoia, delusional beliefs, malicious moments that you never had before? You don't have to answer, it just so rare to actually talk to a rational dementia patient.
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You need someone like a trusted family member, a social worker from your State’s Dept of Aging, or an elder care lawyer to help you. Please seek counseling because there is little anyone on this forum can do to directly help you.
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Try hiring Caregiver help to take the strain off you.

Gping thru an Agency is expensive as they only pay their employees a little more than minimum wage so you need to hire 3 Caregivers and split the shifts between them if you're needing 24 7 help.

Check with your Health Insurance and see what they can offer.

My 97 yr old Dad's Insurance just pays for a Home Health Nurse to come 2-3 times a month once to change his cathiter and once to collect a urine sample, ect.

Your Home Health Provider will also have an Aide come 2-3 times a week for Cleaning like giving a Bath, Shower or Sponge Bath.

My Dad also has a Nurse Practioner with Aspire, come once a month to chk on him, write Rxs, ect.

Check with your Insurance and see what they'll pay for.

My Dad's Insurance does not pay for any Caregiving.

Call the Veterabs Office, if either one of you have been in the Service, call and they will pay for Caregiving help for several hrs a week.

Im checking in to that now and was told I could get anywhere from 24 to 35 hrs a week Caregiving help.

Or start out slowly and hire 6 or 12 hrs a day to give yourself a break.

You might also think about hiring a Live In but they would need to be allowed 8 hrs of sleep a night and 1 day off a week. And have a Bedroom for themself and furnished their food.

Prayers
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disgustedtoo May 2021
"My 97 yr old Dad's Insurance just pays for a Home Health Nurse to come 2-3 times a month once to change his cathiter and once to collect a urine sample, ect."

You later clearly wrote:
"My Dad's Insurance does not pay for any Caregiving."

I've noticed you and/or others have suggested checking with medical insurance. Yes, you can get a nurse for specific nurse duty, such as what your dad needs, but not for general care, as you also noted. It is a bit confusing for others, if they then think their medical insurance will cover care. In general, it won't (see below**.)

They came to my house at least once/day after I managed to get the hospital to let me go home (almost a MONTH in there, UGH!) They had to set up the "feed" bag (PICC line), draw blood, and periodically clean the PICC line area. They did NOT provide any "care" otherwise. Supplies were shipped to me (gloves, wipes, pump, etc.)

You also wrote:
"Your Home Health Provider will also have an Aide come 2-3 times a week for Cleaning like giving a Bath, Shower or Sponge Bath."

THIS may be available through Medicare. When hiring an agency (didn't work out, thanks to my mother refusing to let them in), they sent a nurse to do an assessment, including a better test than the doc office does. She told me that mom could have qualified for some Medicare coverage IF she would accept some personal care. She refused.

**From the Medicare site:

"Part-time or intermittent home health aide services (personal hands-on care)"

One has to be homebound and have doc orders as well. There are additional in home services available through Medicare (and equipment if doc orders it), but there won't be full time help.
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See an Elder Care Attorney for a consultation. I paid $250 for great one hour consultation. Told me what aid we qualified for and how to go about it. See if your wife is eligible for care in an Assisted Living Facility>
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Immediately seek the input of experts and start researching Medicaid and other options. You cannot wait and there is no way to get more money. There are ways to handle these issues but the pro's have to become involved. I am sorry you are going through this. I wish you peace and good luck.
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I can't help but I can give compassion. I'm 57 and mom is close to 89. I don't "have it" anymore. Especially after covid, I feel like I've aged 10 years. As things are now there is no money for assisted living. But, what a trajedy, assisted living would separate you! Why couldn't you be with her.
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If caring for your wife at home is too difficult physically, you need to consider the possibility that at some point in the future, you will be living in separate locations as your individual needs may not be compatible. If that is the case, the best scenario is if you can be near each other in order to be the best support and have the best time with each other. It appears that your wife needs long term care where she would qualify for Medicaid. You the community spouse could live in your home for as long as possible. Leaving the heavy lifting to the professionals will help preserve your health so that you can be there for her in every other way for as long as possible. There may be ways to delay that separation by tapping into elder day care and in-home care that your wife might be eligible for. Both would take some of the physical strain off of you. Seeking advice from an elder law attorney is an excellent idea so that you can prepare your finances and understand the choices open to you before it becomes a crisis. Facing difficult health conditions at advanced age is so challenging, but if you acquaint yourself with the people and programs out there to help and understand the laws regarding that, you will be able to make the best decision possible. That decision might not be an easy one; there might need to be concessions made depending on finances and available resources, but you will find the best choice and be able to own that choice without regret once you fully understand the options.
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Are you a veteran of a war? If so, there is Aid and Attendance from the VA to look into
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Shubnab, are you her 1st husband?

I ask because she can claim against an ex spouse if she was married for 10 years before they divorced. Only after you die and assuming that she isn't already collecting against yours.

She will get 75% of whomever has the highest pay out, you or ex-spouse. That is what my mom gets from my dad, her ex husband.

I would definitely do something about getting her some lift devices so that you don't become a statistic. You need help caring for her and she doesn't get to say no.
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disgustedtoo May 2021
Unclear if your mother remarried, but from SSA:

"Benefits For Your Divorced Spouse

If you are divorced, your ex-spouse can receive benefits based on your record (even if you have remarried) if:

Your marriage lasted 10 years or longer.

Your ex-spouse is unmarried."

There was more, but the first requirement matches what you said, the second requirement is the ex-spouse isn't married, aka the wife in this discussion.
https://www.ssa.gov/benefits/retirement/planner/applying7.html#h4

That said, Fidelity offers this:

"Divorced and remarried?
If you were divorced but have since remarried, you are now a spouse from Social Security's perspective. You are no longer an ex-spouse. Your retirement benefits will be based on your current spouse's work history, not your ex's, regardless of whether your current or former spouse has a larger primary insurance amount.

However, if your current marriage ends in divorce or the death of your spouse, you will be able to claim on whichever benefit is higher, your surviving spouse's benefit (if your current spouse dies) or your spousal benefit on the earlier ex (assuming you meet all the rules for claiming as an ex)."

Lotta dying has to happen!!! There would be better ways to prepare for her needs in the future if OP thinks his time is running out. Even term life insurance - might cost a bit now, but could leave a nice nest egg for her care. WHATEVER he chooses to do, there needs to be a PLAN for her care in case he passes or can't do the work anymore.

(Fido actually suggested taking my "share" of ex. Nope. For two reasons: 1) we were not married 10 years and 2) MY benefit was MUCH higher than his!!!)
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shubnad: If possibly he is veteran, seek help from the VA. Also, you may want to consider applying to Medicaid, especially if you have no other means of financials.
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Some law schools have clinics, staffed by students supervised by professors. It might be worth a call to one in your state. Recently, I called a lawyer in the yellow pages to ask about prices for a friend's daughter. He was very nice and gave me a name of an agency that would be helpful. I think if you call an elder care lawyer's office, or several, and explained your circumstances you would likely get an honest answer about the price of their office or less expensive resources.
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Look into private caregiver agencies where someone can help you in your own home. For example Visiting angels
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I may end up in a similar situation in the future, although nobody can predict that, obviously. Only I am the one who will be living on half the income. My spouse is a type 2 diabetic who is not taking care of himself. I already figure he will be in AL or a nursing home, and I will be living in a cardboard box. I should have planned better years ago, but, as they say, hindsight is 20/20. Even though I did not work outside the home, I hope I might be able to get some part-time work, at least, to supplement my income. Hope things work out for you.
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Start looking at retirement communities that can stage your care. Many offer independent living, assisted living, and total care options. Talk with the administrative staff about your needs and if they take Medicare/Medicaid clients. They should be able to address your needs.
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Also get connected with a social worker or senior group in your area who can discuss the options in your area. The government may provide some assistance. There may be ways to make it work.
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