How to know I’m making the best desicion
I’m new to the discussion. I need help. I am struggling with the deduction to bring my father to my home in California. He currently lives by himself in another state has had a dementia diagnoses since 2017. Currently he his doctors have recommended for him not to drive. VA has only approved 6 hours a week of home health. I have no family support where he is. He’s forgetting medications not remembering to eat and is now starting to not comprehend certain things that are told to him. I am going to bring him to my home in a few weeks but have decided for his own safety and wellbeing I will not be taking him back home due to support out there and him living by himself. I’m struggling with having to make this decision. One I know his home is his safety net. Two and can still do things on his own and moves around well. Why is this so hard?
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I'm not sure if the (1) safety net and (2) can still do things on his own will be relevant on the long-term. Why?
(a) will the "Safety net" last a long time? What if the familiarity with his home starts to disappear, then it's fine to live elsewhere?
(b) self-reliance can deteriorate further. Not remembering to eat or take medications is serious, in my opinion.
So, as you wrote, it's not safe to have him living by himself, so having your father in California may be the best thing to do. Perhaps there are other factors, but while it's important to honor him as a father, it may be worthwhile taking a step back and examining the situation like you are a professional caregiver (or a social worker), as cold as it may seem. And by taking emotions out of decision making, it may in practice may provide for the best outcome for your father.
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Thank you for the response. I think some other factors are the being beat up verbally when he becomes irritated/agitated.
I do like how you say to take a step back and look at it as professional care over. That was very helpful. Thank you
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Very sorry you need this group, but glad you have found us. Yes, this is all terribly hard. But it seems you are making good decisions.
a. You are wise not to think long distance caregiving can work long term with the details you have outlined.
b. Also wise to move him before the inevitable progression causes a crisis which can happen any day now.
- In my years on these boards, members have always advised to move a LO nearer to you, rather than give up your home and support system to move to his community. So, that's another good decision.
- Very soon, if not already, he will be sitting right in his longtime home seeking to go "home". Often, we hold onto the nostalgia, emotional strings, and memories on their behalf while in reality, they forget.
Does he have Catastrophic Disability classification with the VA? Dementia qualifies. That is a priority 4 and he can qualify for up to 40 hours a week of HHA care, Adult Day Care and more. No service connection required for this disability classification. It is a start if you can get the social worker to start on that for you and his Dr. to sign the form it must be reviewed within 30 days. He will qualify. He may even qualify for hospice support which is not "6 months left", in the case of dementias. This will get the attention to his med and nutrition routine as well as progression of his dementia which is likely even further than you realize from a distance.
Several members here have moved their LOs long distance. They will have good advice on how to do this without even involving your LO much in "agreements" and decision input that is beyond them now. We are here for you. You can do this and bless you for understanding and respecting the cautions his Dr is giving.
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Thank you so much!! I am going to call his Primary care with the VA tomorrow to ask about Catastrophic Disability classification. No one has even mentioned that to me. His primary care has put in a transfer of care so we can get the ball rolling here in California as I am told this could take a little while.
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@JM27 Here is the link to more info and the form itself is here (and below).
Not all VA teams know about this Cat. Dis. classification unfortunately, so some education may be required (from you). I hope not though. But if so, don't be discouraged or deterred. Many members here have gone through the process. And there are several discussion threads here on this topic if you run a search. Hopefully your PC team will be aware though and it will be quick. It may help that he is currently living alone so if they expedite the process it could get him more HHA hours at least, even before the transfer and move take place. He definitely should not be alone.
*A thought: are his banking and credit card accounts + access protected from predators yet? And from him depleting things and falling for scammers? The financial risks are a big concern even in early stages.
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@ButterflyWings thank you for the link. I am POA but have not been put on his account. I will do that before we leave to bring him to CA.
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His PC has told me over and over he doesn’t qualify for home maker/ home health services because he doesn’t have 3 things that qualify him. Because he can still move around and he can feed himself. When we went back to her two weeks ago and he had lost 10 pounds that is when she finally gave us the referral for home health but they only approved 6 weeks. But I am going to call her tomorrow and speak to her about having someone come to evaluate him for the Cat Dis.
Thank you again❤️
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You are welcome. And you are right, the PC is not. It actually endangers our LOs due to the ignorance and stereotypes too many medical pros and others have, about dementia. Many of us have dealt with this. Grrr.
For the application: He is a danger to himself and others - requires significant assistance to take meds properly, and surely could forget to turn off fire if cooking. Or put metal in a microwave. Or forget what to do or who to call in an emergency like if he cut himself or just wandered somewhere and got lost. If he forgot the "no driving" doctor's orders, or caused a fire or flood at home, this could harm others. The sense of urgency is real and you are right.
Keep breathing, and keep pushing for what you need. It may be best to email at least once, the social worker on your dad's team. If the PC is not on board, you may need to work around them. Which Dr. said he shouldn't drive? They can sign this form, with what is already documented and attach 1 of the assessments listed in #2 of the Cat. Dis. form. My DH's neuro signed our form and I submitted it to the VA.
** With a 10 lb loss, you can have a hospice agency come evaluate him for support right now. Not because the end is imminent but because he has had some significant decline and that qualifies him for urgent immediate support. Then you will at least have eyes on him and a nurse visiting weekly and checking vitals. It has been a huge help for me and we are going on 2.5 years now, on in-home hospice because he keeps requalifying at every 60-90 day reassessment except for 1 time when he graduated off hospice due to gaining weight and rebounding for a bit. Again, this is a professional resource that he is eligible for, which can also give you some long distance peace of mind and eyes/hands-on help while your transfer of care & Cat. Dis. application are in process.
I know this is a lot. Others will also come along with other suggestions and encouragement. Keep breathing!
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His psychologist at the VA that did testing for his memory based off the cognitive scoring with the memory loss he said he can only “recommend” he doesn’t drive. He states it’s no longer safe due to reaction times due to the memory loss.
All the information is very helpful. I can’t thank you enough. I have been looking for a forum for help and came across this one today. It is such a relief for others to know what you’re going thru and all the helpful information.
I am going to still bring him here in two weeks. But this is all a lot of information that I know will now help.
I also work a full time job though from home it wi help to have assistance for him while I’m working daily.2 -
Yes, this is a great place and people though no one wants to ever need such a support group. There are many people here who have been, will be, or currently are going through exactly what you and your LO are experiencing at any time. It has been such a lifeline for me as I care for my DH.
I too work from home now primarily. And stopping every 10-15 minutes to keep line of sight, and now arms-length support for my beloved (due to fall risk and eating even non-food items) made it necessary for me to get as much support as possible. It takes persistence on your part but you are making good decisions, and it definitely is possible to get all the help and benefits your LO is entitled to.
For me, it is a goal to keep him at home for the duration and the hospice equipment, meds and hygiene supplies home delivery plus nurse and CNA weekly visit is a game changer. DH and I both were sinking fast at one point (well, a few, actually but that's dementia. Such a trickster and relentless). And the Cat. Dis. priority 4 categorization means no co-pays and maximum support even without hospice. Again, it is not a handout but what he is entitled to. Thank you and your dad for his service. And my heart goes out to you that dementia has entered your lives. But there is hope and help.
Stay strong! He is so fortunate to have a daughter like you.
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My goal was originally to keep him in his own home. But him being in another state and it has taken so long to even get the referral for home maker/home aid I believe now after being on this forum and making some sense of the situation it is best to bring him here and get all the help he and I deserve!
Sending prayers, strength and well wishes to you and your DH.
Thank you so much!! ❤️2 -
You are most welcome. Thank you for your well wishes and prayers ❤️ Much appreciated!
And my last tip for tonight: Know that even if you get him to Cali, stabilized, and then decide that a nearby MC is best for you both rather than in your home for the duration of this progressive disease/decline — you will have been able to observe him closely for a time and can be that much better as a primary caregiver still.
- In-home care with support may work great. Or you may ultimately decide that your home is not the best place permanently as his needs increase or behaviors develop, which is a decision further down the road that some people make. Neither choice is wrong, but either way you are doing the wise thing right now to move him closer to you regardless.
Sending good thoughts out to the entire VA system right now, that better education about the Cat. Dis. process and dementia specifically, will become more widespread! TTYL!
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All things I need to hear! Appreciate you so much!! Thank you Thank you! TTYL!
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JM27: Sorry you are going thru this with your Dad My husband is a Vietnam Vet, 100% disabled. Was diagnosed in 2021. They told me he should not drive. I explained to my husband that his brain wasn't working properly & he should not be driving. If he were in an accident even if it wasn't his fault, we could be sued & lose everything. The next day he gave me his keys. I got Caregiver support thru the VA. I had planned to care for him at home as long as possible. In December I was diagnosed with cancer & had to place him in Memory Care quickly. I found a place but was almost $6000 per month. I then began looking into the VA Memory Care facilities. There were 2 in our area run by the VA that got good reviews & 3 that the VA contracts with which didn't get good reviews. I filled out the application and in February he was admitted. The VA facility has a payment scale depending on what category the veteran is. Since my husband is 100% disabled the facility is free. I would start researching the VA facilities now as they have waiting lists and the application process takes awhile to complete. I would talk to a Veteran Service Officer in your county to see if you can file other claims for disability. Was your Dad exposed to Agent Orange or the water at Camp Lejuene? There is a 50% more chance of dementia if he was exposed to Agent Orange. The VA Presumptive List for Agent Orange disability is online. Send a message to his primary care doctor at the VA & tell him that your Dad is not eating and has lost 10 pounds recently. Also you don't know if he is showering, able to dress himself, etc since you're not there. Here is the form for Catastrophically Disabled Veteran application. file:///C:/Users/sdliv/Downloads/10-0383-fill.pdf
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Here's the link to the Agent Orange Presumptive list of diseases. Heart Disease, high blood pressure, diabetes, and many more. They fast track the disability claim if he was exposed to Agent Orange.
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Please check that it is a Durable Power of Attorney…
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Thank you
So much for the information. He has an 80% service connection so I am told VA facilities are free for him. I am finding they have a waitlist as well. I am in the process of transferring his care from his state to California and will speak to him PCP to get the ball rolling with social worker so I can find facilities that are contracted and start to check as my back up. I plan to keep him in my home as long as I can but I also know that may come sooner than later.
Currently he just thinks he’s coming for a visit. But unfortunately he won’t be going back home.
He is aware he forgets things but other moments he believes there is nothing wrong with him.
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and yes he was exposed to agent orange and I will start this process as well as I am finding the dementia could be from the exposure.
Thank you so much for the support andninformation
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yes it is Durable. Thank you so much
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Familiarize yourself with anosognosia. The PWD is unaware of having dementia and yes, they do believe that nothing is wrong. This is why you have to use work-arounds because they do not comprehend reality.
Iris
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Is there anyone else that lives in your house? Having a person with dementia move in is life-changing for everyone in the house. If you have children at home, plan to monitor closely, because people with dementia can lose their "filter" and say very unkind things which are particularly hurtful to children who suddenly find their home no longer a safe refuge. If you are married, having a person with dementia move in can be very hard on the marriage.
If you find that the situation is not working out, it is not a failure to place your loved one in a care situation to provide everyone involved a safe refuge at home.
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yes there is. Myself my husband and my adult daughter. No children. Yes I’m hoping we can get home health in to help out as well as possible adult day care as all of us do work. I do work from home but will need the help durning my 8 hour work day. I also am looking into facilities as well. Appreciate the response and support.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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