Wondering what to do in the future, concerned about fulltime care

Posted by markbrewer @markbrewer, Apr 18, 2023

my wife (65 yrs old) has either dementia or Alz. i believe she has only been in this less than 3 years. i do know for a fact that she has "gone down" considerably in the past 3 months or so. she has had hallucinations and wakes up in the morning with horrible delusions about her retirement money. she keeps having a dream or something in which i have taken all her money and bought a house trailer for a women i knew long ago. i have not spoken to or seen this woman in at least 12 years, she plays no part in our lives whatsoever. i have to spend 1-2 hours most days convincing her that this is not true

I was working a part time job but had to quit because i can't leave her alone. she was fine for awhile on that but not anymore. she can't remember how to answer the phone when i call to check on her.

it's frightening how fast she has gone down. but what i need to know about is what can i do about her care if the time comes that i can't care for her anymore. what is available for people without much money? my mother is in memory care - it costs over $6500 cash every month. we do not have that kind of money. my wife is on medicare. is there anything else for us?

my other question is about how do i know when put her in full time care? a very vague general sort of question, i know, but i just don't know how to find out anything.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Greetings Mark.
Regarding your other question, how do I know when to put her in full time care, I think we each have different thresholds based on our skills and our abilities and our financial resources. I tried to establish criteria earlier on that would guide me when I was struggling, overwhelmed and exasperated.
For example, my criteria included, I will care for my husband at home to the best of my ability for as long as it is safe for us both. I will bring in outside help when I need to have a break and recharge myself physically, mentally and emotionally. Later, I revised my criteria to indicate that when my husband will receive better care in a facility, I will consider placement. My key considerations were his safety and his well being. But it was also important to consider my safety and well being. Interestingly, earlier in the dementia disease a health care professional asked my husband, what his wants were. He stated without hesitation, when I can no longer wipe my own butt, I want my wife to place me somewhere. Fortunately, I was able to care for him after incontinence and keep him safe and reasonably happy at home for a little while longer.

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thank you for your thoughtful reply, LT. i think i should elaborate on my initial post. my wife is 6 feet tall and weighs around 250 lbs. 2 years ago, she lost her right leg under the knee. she has a prosthetic and can walk, but only short distances, like from the house to the car or the car to the Dr.s office. she usually comments that it's very painful to walk. she went through therapy, but i don't think she remembers much of what they taught her about walking.

i am unable to pick her up. i am trying to make some kind of plan for when - or if - the time comes when she can't walk at all.

i wonder if there is some government help available, in some way?

things are well enough for right now, but i know things will change.

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@markbrewer

thank you for your thoughtful reply, LT. i think i should elaborate on my initial post. my wife is 6 feet tall and weighs around 250 lbs. 2 years ago, she lost her right leg under the knee. she has a prosthetic and can walk, but only short distances, like from the house to the car or the car to the Dr.s office. she usually comments that it's very painful to walk. she went through therapy, but i don't think she remembers much of what they taught her about walking.

i am unable to pick her up. i am trying to make some kind of plan for when - or if - the time comes when she can't walk at all.

i wonder if there is some government help available, in some way?

things are well enough for right now, but i know things will change.

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There are a variety of government programs. Many government programs are based on need and income. The eligibility criteria may further vary based on age and disability. Additionally, Veteran's programs are available to those that served.
To learn more about the government programs, your area agency on aging may be able to help or possibly the health and human services department. Information on Veteran's programs are available at the Veteran's Service Office (VSO).

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thank you so much, LadyTexan.

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Mark,
It is important that you obtain an actual diagnosis for your wife as this determines treatment and therefore, options for care. There are many medical conditions that can cause the symptoms that you are describing, including having a Urinary Tract Infection. Schedule an appointment with the family doctor first for a urinalysis and blood work. After these results, depending, Schedule with a Neurologist for additional testing. The testing should be covered by your wife's Medicare.
If you have Long Term Insurance or can sign up, that will help. If you are low income and could qualify for Medicaid, long term care in a facility is available. In the old days, they called these facilities "Nursing Homes". There is also Skilled Nursing Care in a facility with a qualifying diagnosis and patients can usually stay up to 30 days and Medicare is accepted. Your wife would receive Medical Care, Physical, Occupational and Speech (Cognitive) Therapy according to her needs. In home care by Home Health provides short term care and a doctor must order this service also covered by Medicare. Home Health staff, a nurse, physical, occupational, Speech and or a bathing aid could be ordered for visits each week. This is a good way to have extra trained personnel on hand for safety issues and they are a wealth of resources for you.
Once again, receiving the actual diagnosis is key. Let me know if I can help in any way.

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HI Mark. If you don't have a diagnosis yet, you should get one ASAP. Also it would be good for you to have at least one visit with a CELA (certified elder law attorney). Many will give you the initial visit free of charge, and you can verify that when you make an appointment. If you haven't already done that, it is very important! They can protect a lot of assets for you, and they will explain about Medicaid. They will also be able to make durable powers of attorney, which will become necessary, but that needs to be done while your wife can still make sound decisions.

Finally, I would suggest contacting your elected officials, asking what types of assistance is available for her. Local officials will have sources to get the information for you, and you might be surprised at what is available.

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Mark, ladyaceintx1 mentioned urinary tract infections (UTI) that can have a huge effect on people with dementia. There are some home tests that you can get at the pharmacy or order online. They’re called AZO urinary tract infection home tests. We order them from Amazon. They’re about $10 for three tests.
They’re easy to use. If the result is positive we go to my husband’s doctor or a nearby urgent care clinic for antibiotics to clear it up. We always keep a few of these on hand.

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I am looking for ideas about how to find trustworthy private (non-agency) people to provide full-time in-home care for an elderly woman with Alzheimer’s disease. She is in Daytona Beach, FL but my question is really about the process. Thank you.

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Mark, there are many resources available but not easy to find. The Eldercare Locator phone number, 800-677-1116, is funded by the Older Americans Act and can assist with finding services anywhere in the U.S. I agree with the answers others have given but, again, the most important is finding a qualified neurologist who has a lot of experience with dementia and get a definite diagnosis. If you live near a large city, go to one at a large hospital like Northwestern or Rush in Chicago or Cleveland Clinic. Also, checking for the UTI quickly with a urologist. If your wife has dementia, you will need one anyway at some point. One last suggestion, try Palliative Care for your wife. This is NOT hospice but most hospices have Palliative Care I believe. Medicare pays for Palliative Care and provides a R.N. coming to the home who can give you some direction and referrals. Good luck.

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Hi
Have you called your local senior or elder carr state service dept. probably under the dept of health.
Alzheimers assoc. AARP MOGHT POINT YOU IN THE RIGHT DIRECTION.
Ask for a social worker?
There are usually state resources to answer questions and hrlp.

Wishing you success in finding help.

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