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Hi, my name is Alissa. I'm 19 years old and I take care of my grandmother 2-5 days a week. I am a stay at home mom, and my dad, who lives with my grandmother, works full time, so I come over to take care of her while he is at work, with my 1 year old son. To be brief, she has severe dementia. She knows who she is, her birth date, she can recognize my family members for the most part but often mixes up names and relations. (She knows who my dad is, Michael, but sometimes she thinks he is her husband, instead of her son, etc) that is about all she understands anymore. Physically, she is pretty independent. Gets up and down the stairs quite well, very rarely does she fall at all. Showers, gets dressed, makes her bed and her breakfast, etc. She often tries to wander off and is regularly up at night. She is very anxious, agitated often because of the things her "associates" say to her and good days without a mental breakdown are hard to come by. My dad has been her sole caretaker through all of this, it's been about 2 years since her condition got really bad and 5 years that he's been taking care of her, with no help (physically or financially) from his out of state siblings. It affects his personal life, his career, and his mental state,although he will not admit it. For reasons I don't want to get into, he is very hard to talk to and we don't have the best relationship. He did take my younger siblings on a two week vacation in August, during which time I stayed with my grandmother. This was extremely difficult for me to see how my father was actually living, 24/7 with her severe dementia. Although I'm sure her symptoms were worsened by the stress of my dad not being here for that long, it was absolutely horrendous. I got more sleep when my son was a newborn than I did in those 2 weeks with her. At this point I insisted that my father start the process of putting her into a nursing home, something he has been fighting. He finally did agree and said he started the process already, submitting an application for Medicare (I believe) and that she is on a waiting list. As I said he is very hard to talk to, so I gently bring these issues up to him. When I asked how long the waiting list was, he asked "well you're not going anywhere anytime soon, right" implying it would be a long time... eventually he said it could be 2-4 years. Considering her mental state, I do not understand how a waiting list could be this long or that the process could take this long. He has POA, and has already spoken with a lawyer and his siblings about what will happen to the house, her assets, etc. I truly do not believe the process could be this long and that he is putting it off, and not telling me. I have tried to explain to him that he has done everything he can to keep her in her own home as long as possible, which he says he understands, but i don't believe he does. My grandmother honestly enjoys the attention she gets in the hospital and when she has been in the rehab centers before she has never complained, so I don't believe she will be very upset to be put into a nursing home. In fact, she would probably enjoy the socialization with others her age, as she doesn't get to go out much now. I found some paper work this morning that he was looking into VA nursing homes in Maine, where his sister lives and his family is from. We live in New Jersey. I don't really understand why he is looking out of state, could that be why the waiting list is so long? I'm just hoping someone can tell me about the process and your opinions if this information he is giving me is accurate. I don't want to hurt his feelings, but I truly want what is best for him and my grandmother. I'm his oldest child, my siblings are in high school, he and my mom are not together and do not speak about these things so he has no one else looking out for him, and I feel it's my responsibility, but he is very authoritative and will not answer my questions to my satisfaction. How long was the process for you, does this seem accurate?

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NH aside, has she been seen by a geriatric psychiatrist? Meds may ease her agitation.
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I don't know the extent of her medical history, I only started taking care of her regularly and getting involved in this about 6 months ago. I do know she takes 8 pills daily, and after her last doctors appointment my dad complained of them never getting the right combination. He only gives her anti anxiety meds when she has a bad episode, because they tend to knock her out and it makes it worse in the long run with her sleeping schedule. She has always been an extremely anxious person, even in her younger years. When I ask my dad about these things, he often doesn't fully answer my questions, but I know she goes to the doctor regularly, every 8 weeks or so.
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grandma should probably be on regularly scheduled anti anxiety and anti depressant meds not just given them in a crisis. what kind of doctor does she see? is it someone who understands dementia?
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Your dad doesn't sound like like he's very enthusiastic about the NH idea.

If she's going to be on Medicaid, she can only apply for he state in which she's a resiident. So right now, she would only be eligible for Medicaid in NJ. She would have to live in Maine to apply for Maine Medicaid.

Also, she needs to be medicaly "at need" to be eligible for a NH. Has her doctor documented her need for NH care.? Might she be a candidate for Assisted Living.? Have you looked into Adult Day care, or Medicaid waiver programs in your area? You might try calling up the local area agency on aging and meeting with them.
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One more thing. Yes, nursing homes have very long waiting lists. But if granma goes into the hospital for any reason, she can be discharged directly to a facility, jumping the wait list entirely. If grandma ends up in the hospital, make dad see it as the opportunity that it is.
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Also, does her doctor know that she's up at night? What sleep meds have been tried?
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I notice you mentioned "stairs" that's high risk for falling especially if you get her started on any kind of sleeping or psychotropic medications.
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You have two choices. Either stay or move out if you are able. He is using you while he works. Medicare will pay for home care with a doctor's orders, and you need to be more forceful with your father about what he intends to do. At 19 yrs. you are not responsible for his mother, only your young child. First consider him/her, then tell your father he needs to produce paperwork to show you he is trying to apply for government assistance. If you do not stand up to him, he will continue to use and abuse your good works.
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Your gut feeling that 2 - 4 years to get into a NH is not accurate, is correct.

If dad is saying this, my thoughts are there is something that he thinks needs to happen to qualify his mom for care and he is thinking that is going to need 2 -4 years to get done.

So what could take 2 - 4 years......hmmm, medically the way you described her she could easily go into AL (assisted living) & probably after getting a gerontogist work-up could show "need" for skilled nursing care at a NH (although may take a couple or a few months of every 3 -5 week visits to the MD to show defined & documented need in her health chart). So medically showing "need" will be ok. So that leaves financial issues being the hurdle. Likely concerns that there are financial issues done in the past by dad that totally makes grannie ineligible for state assistance aka Medicaid.

So how to determine this...
Do you have any idea of what Grans finances are? Where has her income & assets gone to since 2010? Could there be any "gifting" issues with her $? That vacation that dad took your siblings on, how did he really pay for that? Medicaid requires a 5 year look back on all assets in addition to current monthly income being under a certain limit in order to be eligible for Medicaid. Sometimes the lookback could be 3 years (like for my mom it was 3 years & 6 mos but she was in IL before moving into a NH "Medicaid Pending" so kinda knew where $ went).

Is it the situation that Dad & grannie live in a home that is in Grans name only?

Is Dad interdependent on the income & savings that is Grans?
Like he needs and uses her SS, retirement, savings etc in order to pay joint household costs? Money has been commingled situation.

If all of Grans $ was completely removed from dad, could he easily & forever pay all the expense on the house as well as his personal living costs?

Is dad or gran paying you for the caregiving you are doing? (btw you are amazing to do this & keep a sense of humor going too!)And is this done with some sort of written contract perhaps done by atty or notarized? or cash? or by check from gran to you?

So are any of the answers leaning to dad being dependent on her $; using her $ for his living costs..... If the answer is YES, my guess is that dad is trying to get beyond the 5 year lookback for Medicaid "gifting" or transfer penalty happening. It may be one of the reasons why he is so closed or secretive about things.

You may need to put on your best Veronica Mars or Nancy Drew hat and look around the house to see just how & where $ is going. If you find commingling is going on, dad really needs to set up a appointment to discuss how to deal with all this & ASAP. Good luck!
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May I suggest that it your Dad may not know that there are facilities that specialize in memory care. The staffs are specially trained to deal with the problems caused by dementia and understand its progression. Memory care facilities are usually better choices than a nursing home for those without severe physical problems. There Grandma would have activities to help pass the time and a social life designed to meet her needs. It could be a more interesting life than that in a nursing home where most are confined to beds or sit in wheelchairs awaiting the next meal.

For the last seven months of my husband's life he was in a VA nursing home. At that time it was best because he not only had moderate dementia but many physical problems. He was not happy as there were few activities, less that we had had in senior living. The physical care was great.
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I forgot to say that they told me 2 year wait to get my husband in the VA nursing home - but it was only 11 months to the beginning of admission and a month to get all the needed paperwork completed. Could the presence of long term insurance to help offset their costs have been a factor? I have wondered.
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Medicare will NOT pay for any kind of home care unless it is physical therapy. Get a test for B12 deficiency. If injections are needed you can get *some* home care because it will need a home health nurse to give B12 injections, and you might be able to get some minimal home aid care like bathing. But that's a big IF.
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What do you want to do if you haven't already done so is make sure she has a will and see if any of her money and assets are mentioned in that will because they may have already been promised to someone, and you can't overturn illegal will as long as it was written and filed when the person was of sound mind.

As for the nursing home process, I don't know. Both elderly people I dealt with in part were placed into nursing homes but I don't know the process that was taken. I can tell you though that APS must've done something because he was assigned a court appointed guardian who took over everything and admitted him to a nursing home. Again, I don't know the process, I've never done this myself
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Also, YOU are not responsible to do all this, or figure it out, since your dad is mentally capable, has POA, and is determined to do everything HIS way.... You do not want to be his enabler (I hope), by putting your own family in second place and concentrating on his and your grandmother's needs.... It will wear you out and eat your life, if you let that happen; not only that, your dad will not cooperate with you; I know, I live this now and am having to pull away myself because the stress is putting my marriage and my health at risk now....
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If your grandmother goes from the hospital to the NH, she does not have to wait and goes to the head of the list. When my mother fell and became unable to walk, they took her back to Assisted Living. The AL director told us they could not care for her. He recommended that if they call the ambulance and have her admitted back into the hospital and the doctor indicates she needs a NH, she can go directly to the NH from there. We did not have a choice of NHomes though, as they had to send her to one that had a vacancy. In fact, you are right about your grandmother might like the social life in a NH better than being at home.
Although my mother was not mobile, she was able to see and talk to people all day long. Her dementia was pretty bad so she did not participate in activities, but I can tell you, there was something going on there all the time. The social director made sure the patients had things to do, bingo, music, entertainment, celebration lunches, "special" days and she also made sure Mom got activity items like coloring pictures of her favorite animals, jewelry and makeup. We couldn't complain about Mom's care at all. She was better cared for in the NH, and fed better than she was in AL.
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Babalou

Your comment about long NH waiting lists, was unintentionally funny. 5 star NHs can (and probably do) have long waiting lists.1-3 star rated, eh, not so much. In fact, it is in the best interests of the lower rated ones to keep residents as long as possible, since attracting new ones can be difficult.
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Youngcaretaker

Your dad is probably concerned, and rightly so, of how his mother would be treated at the NH, hence the hesitation in having her sent there.
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Lets get back to the original problem: your stay with her 24/7 for two weeks. You don't want a repeat of that, I understand that. You should make that clear to your Dad. I did that once and was pulling my hair out after one week.

But your Dad is caught between a rock and a hard place. Your grandmother doesn't have the money to be in a paid nursing home unless the house is sold. If the house is sold, then your Dad has no place to live. Maybe he is thinking selling the house and moving back to Maine to live with family. This would make him homeless and without a job (a hard thing for a man to walk into willingly) not to mention leaving you, his grandchild and his other children. Also no job means falling behind in child-support. .

The waiting list may depend on her spending down her money from the sale of the house. Perhaps your father is just hoping that a promice to never leave her with you for the 24/7 will be enough to let this whole thing blow over. The other option is for you to call the Maine family and ask what plans are being made.

Perhaps your parent's divorse was caused by the burden of your grandmother. Your Dad is afraid of the rift it will make with you and him. Some men are tied to their mother with strong cords of guilt and cannot leave.

If your grandmother was a war veteran, the waiting list might be very long, but there is usually home helps available at the Community Living Centers (VA Nursing Homes).
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Great answers, here. I think it's the fact that your dad is looking at a VA home out of state that is holding this up. If your grandfather was a disabled veteran your grandmother may be able to get a room there, but they takes veterans over spouses so that can mean a long waiting list.

A regular nursing home would not have such a long list. Maybe weeks or a month or so - often less. Your dad is likely afraid of the money issue and having to sell the house if your grandmother goes on Medicaid. She'd have to spend down the money that your grandmother has before she qualifies. This can be a complicated process.

I agree that your dad is afraid of it all and if you'll do the work, well, why not? The point is you have to say that you can't do this. Get yourself out of there if you can. You are too young to have this responsibility and you have a young child to take care of. You need to build your own future.

Please see if you can get some counseling if you can't get yourself out of this on your own. You need to take care of yourself.

Warm wishes,
Carol
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The rule in our state about hospitals-to-NH, is they have to stay in hosp. 3, 24hr days, NOT counting admission and release days, before they could go to NH, then ONLY if they require "skilled" nursing. See the Social worker on admission day. Then Medicare covers 90 days and then it's up to you to bring them home or move them AL... if they are able. File for Medicaid WHEN she goes in. Many here no longer take Medicaid pending (not approved yet=lose tons $), and you have to pay private funds until it is approved (6,000+) a month. Most elderly in U.S. do NOT qualify for Medicaid, why? too much income or assets. Many do not take dementia or alz. patients anymore because they are not "lock-down" safe units. The most important start point is a Neurologist trip for all the tests. You have to have the medical data before you take them anywhere. This is ALL a vicious, mean FEDERAL cycle and most do not qualify for Federal Asst. programs of any kind except. SS. They can go to AL if they can handle the patient's disabilities and you have upfront $. I agree with most said above but a 2-4yr waiting list is not normal unless there is a $ issue. She definitely needs the right doctor now, and meds do help sleep and anxiety that will only worsen. YOU will need meds too before all this is solved (my 5th yr.)! And, you are too young, and need to stay healthy to take care of your child - which should be your TOP priority! Adult day care is a GODSEND! She will fuss about it, but you and she need it. It is your relief and gives you time to investigate. You also need advisers. The courts Ombudsman program watches out for the needs of the elderly not able to take care of themselves and are good advisers on resources. National Institute on Aging (NIH), has free resources, and a GREAT easy book for Alzheimer's home caregiver, "Caring for a Person with Alzheimer's Disease", easy to use guide. Alzheimers Disease is the #1 Dementia. This booklet will wake you up and prove to you that you cannot take care of her "alone" much longer, and be a good mom. Learn as much as you can about it. www.nia.nih.gov/alzheimers 1/800-438-4380, www.alz.org, watch the virtual brain video, www.alzheimers.gov. Also from your state alz office find support groups for the caregiver. (ex site - put your state initials in - alznj.org) They are very valuable for sharing/learning from others dealing with dementias. Dementias are LONG-TERM-TERMINAL diseases. This is a MEAN disease. Hospice is also AWESOME help and resources! Sorry to be so lengthy. My heart went out to you, because you are too young for this responsibility, most of us are too old! It is DAD'S and siblings responsibility. And, YOU are a GEM and BLESSING young lady to help. You can continue to "help" but not take on the full load". He can share g.ma with other siblings in another state for awhile or have sister come there and help be a caregiver, or help place g.ma. You do the research for him, which will help everyone.
I hope and pray you and baby will "very soon" be on your own. You deserve it. God Bless you!
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you might have him apply for HBHCW Longterm care with DCF the Fed. yearly cutoff date is now for evaluations to start in November for Elder Affairs.
. end about Feb.then placements.
This would enable aid companion respite care or pmt for family member giving 24 hr care or so f.member can work. but have to make care plan and log in hours just like a job.
gives the meals on wheels etc. and case manager.
This would get her evaluated. available to age 60 or over. But under certain requirements qualifications a younger person is eligeable.
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Normally they must be willing to go. If they're competent and still able to take care of themselves to some point, there's usually no need for a nursing home if home health care or some other outside help is coming in and helping.

Many times families end up pressuring the elder to go, even going behind their back's and doing stuff that lands them in the nursing home. Other times if there's no family, it's much harder to get someone into a nursing home as I discovered with my foster dad. If there is no immediate blood family, getting someone into a home is near impossible. The only thing that could get them in is if they land at the hospital and workers see signs such as self-neglect. This will get the right people immediately involved and the rest of the process unfolds from there. Now I know why my foster dad dropped his doctor and refused to get any regular medical care afterwards until he landed pneumonia and had to go to the hospital. Outsiders can make all the reports to the APS until the cows come home, but until the person lands in the right hands, getting them into a nursing home when there's no immediate family is near impossible, if not impossible. Been there, done that! I think to some degree having no family is a great form of protection against being forced into a nursing home because it makes it so much harder to get you into one if there's no one around. Another way he made it harder yet is having no one around, he was a big time loner. I was the only one he ever wanted around, and he did a very good job at hiding things from me, he was very secretive. Secretiveness is a great way to protect yourself, a great form of self-preservation and survival. Now I see why dad stayed undetected in the free world so long without anyone knowing what was really going on, and now I also see why he kept everyone else away and avoided everyone else anyone knowing what was really going on, and now I also see why he avoided everyone else. Tell him it was a self preservation survival strategy that kept him from being captured and thrown into a nursing home. I think what really scared him more is idea of someone grabbing a hold of his money, not something anyone would want.
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