Hey everyone - I have been absent from the site for quite some time. Just a refresher, me and my husband have been married 11-1/2 years and he has had dementia for 5-1/2 - 6 years of that. His diagnosis is FTD. He is 72 and I am 45, so I still work outside the home. My parents, who are 80 and 76, come each day and get him lunch and help take care of our dogs.
A couple of things come to mind, one, my parents are getting old and are probably not the "best" back-up plan for a caregiving system although it works right now. Second, based on my age and our home, etc., I have to work, so being a full-time caregiver is not an option. Nor do I think I could. I love my husband or the person that remains, but I am not in love with this person I go home to each night. I am 45 years old and we have not been intimate in almost 7 years.
Getting back on subject, what were some of the things that were clear signs that you knew it was time for placement for your spouse into a facility that could offer 24 hour care? I struggle with this daily. I want to keep him home as long as I can, and as long as it's safe but I know that's not going to be forever.
My Mom thinks I just want to get rid of him so I can live my life. That's not it at all. True, my life is pretty depressing right now, but I also don't know what life looks like without him. I'd be lying if I said that I didn't long for companionship, because I do. It's not so much the sex that I miss, but more the conversation, and little touches, etc.
When it is no longer safe for him to be left alone. It could be because he wanders; turns on appliances; can't remember to get his meals; anything that will worry you that could happen when left alone. Also, being alone he gets no socialization. With FTD there will most like behavior problems that will come up. Some will often get violent which if happens with your parents is not good. I would not let what your parents think and say affect your decision unless they support you. Until you have been in your boots they don't know. Plus, we all handle situations differently.
I would start looking to see what is out there and figure out when the time comes how you will pay. Is he a veteran? He may be able to get help through them. I would imagine when the time comes to place him he will fight you on it - hope he doesn't. You could start with day care might be an option.
Also, make sure all the legal paperwork is in order. That your assets are protected as much as possible.
Just keep in mind - your health is #1. He has a terminal illness. I would tell those who don't support you, to please keep their opinions to themselves.
I can't speak to your placement problem since my husband is at home but sure can sympathize with your statement that you love your husband but are not "in love" with the person he is now. Sometimes it's hard to love them period :)
No one answer for everyone. I believe the decision has more to do with your limits and when you are going crazy and not any specific stage your spouse might be in. Given your age and need to work this might push you to doing it sooner.
Also, as Charlotte says, when it is no longer to be safe at home. Of if he needs more routine. Some people with FTD do better after placement if in a good place that provides support.
In my case my wife's sisters were suggesting it, her psychiatrist suggested it, the neurologist suggested it and the paid caregiver suggested it. In the last case she noticed that my wife was much less active than when she started working for us. My wife's sisters though that I and our son would do better.
If you have the option of placement then it's not a question of if you will because you're going to. It's just a question of when. That's a sad truth because this is going to continue to deteriorate and you cannot work full time and provide full time care. That's true even if we don't work once their care needs extend to anywhere in each 24 hours.
Thoughts about ourselves always sound bad but the road to you being on your own is already set and is a matter of time - not options.
If the income is required for long term viability then it's the income that is the priority and the choice of continuing to work and placing your husband is the necessity that creates viability for you both. There aren't any 'good' choices here.
As to you being allowed to have life; save the one you can. Everyone wrestles with placing their spouse and what that brings. It's it's own horrible part of this experience. You're probably right that your parents are getting past the point where they can provide what you and your husband are both going to need.
This is a very hard experience to go through. It sounds like it might be likely that keeping the job and placing him when you have to is a road of necessity already in your life. Numerous others here have formed new relationships while providing care, love, and support for their placed spouse. Words aren't going to easily cut it in things like this. We have the right to our life and more than that, it's a good thing when we can find a way to continue our life.
Thanks everyone for your comments. I remember when I first found this site quite some time ago and I started reading through the older messages and discovered message threads on almost everything that was going on at the time with my husband. It was a relief to finally know that I wasn't alone, even though I wish this journey on no one.
Charlotte - Yes, my husband is a veteran. He served in Vietnam and received a Purple Heart. However, he has no idea where it is at. It could be with his ex-wife, or could have possibly been lost between his 1st and 2nd marriage. I have started the process for getting a replacement medal, which according to the Army can take up to 180 days, so waiting on that. With his Purple Heart, he would qualify for care at a Veteran's Home because the Purple Heart automatically places him in a different tier, or at least from what I have been told. In talking with an elder care attorney, trying to qualify for Medicare would be possible however, my company uses a 401-k with company match as our "retirement" and Medicare looks at 401-k as an asset and can take 1/2 of it up to a certain amount.
I have found during this journey that some of the people nearest and dearest to you or so you thought are not so supportive after all. My relationship with my family is very distant now because they want to judge me and offer up opinions on things they know nothing about. I have lost my best friend of 30+ years because she had different opinions of what she thought I should be doing.
I know the time is coming and sooner than I like to think. I'm exhausted and depressed but yet I still have a very hard time thinking about taking him away from his home. Thanks again to all of you for your comments and suggestions.
I think you mean Medicaid. Would have been nice if Medicare and Medicaid didn't start with the same beginning! Contact the VA geriatric division. They come out, do an assessment and then let you know what they can offer. They can help to get help for things like day care, respite, etc. If not already, go to the VA website and check the caregiver support sect. As for the Purple Heart there should be a paper trail proving it without the physical award. Being a veteran he is eligible to reside in a veteran home. They can also help if you sense the VA is dragging their feet. If not them, there are veterans, usually can be found through the VFW, that can help with red tape.
If Bonnie pops in, she had a great VA office that was connecting her up with help until her husband took a sudden turn and died.
It is called 'geriatric evaluation and management'. If you have a 'my healthy vet' account set up, it may show up in the address book there. (open compose and see if it shows up).
If you haven’t signed him up for VA healthcare I suggest you do that soonest. Even if you won’t use it right away, it takes a little while to get things set up and you don’t know how things are going to play out. Even if you never use it, it’s a resource.
Look for the closest Veterans Service Office (VSO). Since he was “in country” he qualifies and with Purple Heart has higher priority. No need for the physical medal. They’ll look it up with SSN. Once signed up for VA healthcare, ask about “catastrophically disabled”. There’s a form to get doctor to sign. You can find it on the VA website. It takes persistence with that. I couldn’t find people familiar with the category. If you get that a lot of stuff is free.
Come to think of it, Charlotte, have you tried that? There were some people on alzconnected who got that for their husbands. I left the form with his geriatric psychiatrist, but he died before our next appt. And, yes, dementia is catastrophically disabled.
You can use VA healthcare in conjunction with Medicare and your regular plan. If he retired from the Army and has Tricare for life then for most things Tricare for Life is better than VA. However, I wasnt finding geriatric psychiatric care locally. Here in Southern Cal, Loma Linda VA has a geriatric clinic that was worth the drive and minimal copays. As his caregiver I had access to a clinical psychologist and social worker. But he died just 5 months after I found out about that clinic.
My husband just liked to stay home and be with me. When I first thought about placing him I decided to try Adult day care first. I had checked out a place a year before that and didn’t think my husband would tolerate it, but a year later I just needed some freedom and signed him up. I didn’t even explain it to him. Just took him there and said he’d stay there for awhile and I’d come get him later. I was amazed it worked. If cost is an issue some of those places have grants and scholarships. Your local Office on Aging may also have scholarships. Bonnie
He is VietNam vet. So income doesn’t impact healthcare eligibility. He qualifies due to agent orange exposure. For some things income affected the co pay, which was negligible.
I think with catastrophically disabled there’s no copay for office visits and medications!
Ya - the copay changes. We were originally $15 for 90 days on RX. Now it is $24 for 90 days. Got a little raise in SS this year so the copay went up even though Medicare Part B went up plus supplement went up. Can't win there!
Interesting about the rx copays changing. Jim was drafted in '70 and spent 2 years. Signed for VA care in 80s but didn't use it till 2013. Copay for meds has always been $24 for 3 months or $8 for one, doesn't matter what meds.
And it hasn't changed even with the change in income.
I didn't realize dementia could qualify for catastrophically disabled. They do offer so many days of day care they pay for or having someone come in. Unfortunately for us daycare is now over an hour away so not an option. I am going to start having someone in soon.
Thanks for all the great information. It's time for me to seriously start looking into these things. I am struggling with the decision to have to move him from home, but I know the time is coming.
A couple more questions - so, I received a letter back saying that the department of Awards and Decorations did not have a record of his Purple Heart. The letter said that we would need to show proof of medical treatment. I have done a separate request for his medical records but each of these can take months to hear back. So, are you saying above, that he would be eligible for benefits regardless of his income based on him being a Vietnam Vet and being exposed to Agent Orange?
I am looking for a possible avenue other than Medicaid that would help with placement because Medicaid looks at my retirement as an asset from what I am told and 1/2 of it will be up for grabs.
I forget if you have contacted a social worker or someone that specializes in getting through the red tape (often a person at the VFW) or Bonnie gave the name to look for. They can often get the information a lot faster than we can.
Yes, I would start looking for places, getting his name on the list. The waiting list can often be long - depending on where you live could be years. If they call and you are not ready then just tell them but ask to be kept on the list. Unfortunately if you are self pay they often want a deposit. For Medicaid Long Term Care they don't but often those beds are limited.
For you retirement I would consult an attorney who specializes in protecting assets. He/she might be able to convert it to something protected from Medicaid.
The VA should have a Geriatric Evaluation Management person who will help to connect up with programs and services he is eligible for. Try to contact anyone he served with, too. Also, may consider contacting your congressman or senator to help with getting his purple heart proof.
When I went to the Veteran Service Office (VSO) they were able to look up and check eligibility for things right there. He should be eligible for health care which would get you access to the VA Geriatric stuff like Charlotte mentioned. I recommend getting him eligible for VA healthcare even if you intend to use other health insurance. It includes access to medications, for example. Bring no his DD214 and any records you have of his time in country. Note even some vets who were not in country are now eligible. Even if you never use it, it gives you options.
Then, after eligible for healthcare find out about catastrophically disabled.
Healthcare is not the same as long term care placement however. At the VSO you can get a handbook of Veterans’s benefits which is sometimes easier to research and understand than online. It will explain about nursing homes. Those are income based.
You really need to see a lawyer certified to work with the VA and experienced with Medicaid before thinking about placement. The VSO might be able to recommend a lawyer.
His decorations should be listed on his DD214. See if that lists the Purple Heart. Some servicemen have been known to lie to family and friends about receiving that though. I’m not sure Purple Heart gets you anything extra unless the current disability is related to the combat injury. Medal of Honor is the one that’s treated differently.
I have a power point presentation on how the VA works for long term care. I could summarize that or scan it and send to you by email if you don’t get clear answers from the VSO.
I just received a card in the mail saying Veterans may qualify for a Program of All-inclusive Care for the elderly (PACE) at little or no out-of-pocket expense. It’s not placement, but might be helpful caring for someone at home before then.
It says it includes medical care, personal care at home, equipment and supplies, day programs, transportation to medical appointments, prescription meds, dental, hearing, vision and foot care.
My card is for InnovAge California PACE (ICAP). Www.myinnovage.com/veterans
I have no idea if this is available in other states.
PACE was available only in certain states. Someone on here used it. Looked it up, only available in California, Virginia, Colorado, New Mexico and Pennsylvania or at least from the link you posted.