[Ashlee T.]

For those of you who have kept up with my grandpa's dementia situation and all that has come along with it, here's an update:

I'm pretty brokenhearted right now. As I expected they removed his Aricept shortly after my last post (a couple months ago I think??). Things didn't quite go as my aunt (the one that wanted to remove the meds) expected. She thought he'd mentally decline so fast that they could put him in a home without him really knowing what was going on. That didn't happen. Instead, he physically declined which made it much harder to care for him.

Two days ago he got sick, as my grandma had been sick the week before. Seemed to be doing better yesterday, but my aunt called from the hospital (where she works) and said she was sending her son ( an ambulance driver) to come pick him up to spend a few days in hospital. I knew then, this was not good. She did, as I expected, she used the hospital as a way to get him out of the house and transition into a nursing home.

Now, I realize that when things get to a point you can no longer give someone the care they need, a nursing home is the option. But it was agreed upon months ago they'd put him in a facility for veterans (he's a WWII vet). Turns out there was a waiting list. So I found some places here where I live that specialize in alzheimers and dementia patients. My aunt advised this morning that she thought the best option was to put him in their local nursing home (even though it has an awful reputation and specializes in nothing). She talked my grandmother into it, and now my grandmother has agreed.

So now, not only did he have his medicine remove that allowed him to function even halfway normally and feel good, but he's being put in a nursing home with a bad reputation. I feel anger in my heart, and I don't know how to stop it.

My heart is breaking, and there's not a THING I can do about it.

[pretzel]

Sorry BD,

As much as it may hurt, him being close to his wife and your aunt isn't necessarily the worst option. If his mental capacities are still ok, he'll have more chance to have people coming to visit which for many is as good a health care option as any.

I'd also go to you state department of health's website. I know here in PA, they maintain files on all nursing homes licensed in the state and you can check their inspection reports and complaint files. Alot of times, facilities will get a reputation based on past histories or prior managements and may not necessarily reflect the current state that the facility operates.

Wish your grandpa the best.

[CHANDLERS WISH]

I feel for you BD, I can imagine this hurts 10 fold but I agree with Pretzel, at least until the waiting list has room for him, he has more visitors, she obviously chose something close...

And, his further advice if that was me? Would be a relief to know I could do that because yes, often it is past history or management that gives the bad reputation that sticks, but may not be the case now, for your peace of mind, I'd follow his advice....

Keep strong...

[Ashlee T.]

The inspection I pulled up from the end of 2010, says that they failed to meet every single requirement and were given a completion date to correct said requirements.

It's a non-profit basically owned by the community.

I can't link it here, but you can google Kentucky Cabinet for Health and Human Services and then scroll down to "Grayson Manor" and click on the document. Maybe I'm not understand correctly, but every requirement I saw stated it was not met.

Maybe they seem like little things.......but he worked so hard, and they have plenty of money to put him somewhere nice to get the best of care. I realize he's "closer" this way, but isn't it selfish to sacrifice his care for your own convenience? If he were here in my town, there are equally as many family members that would visit him (plus we're only an hour away from where my grandma lives) plus they are specialized in alzheimers and dementia. I just don't understand. I feel like what they are doing is so selfish. I know what sad feels like.......but I'm literally grieving inside over this and have fought tears all day at work.

[CHANDLERS WISH]

How would your Grandma visit an hour away at her age?

In-other-words is it possible that is what they were thinking?

Maybe that is why they decided, and intent to keep an eye to ensure he is not missing anything whilst there...

What if grandma stayed with you or other family where you are? And, he therefore moved to where you wanted?

Is that an option?

[pretzel]

BD, got a chance to review the facility and it's inspection report. Overall, I agree it's not the best facility but it most certainly could be worse. Here's my assessment of that facility. First off, it's a small non-profit. That's not the best situation, but not the worst either. My best guess is that's an older facility which has been in the community for many years which is why they can continue. I would venture to say that a majority of the residents are medicaid reimbursement. I'd also venture to say that for a good portion, there are no other supplemental insurance plans. The reimbursement rate for this facility is $166 a day. That's about average from what I've seen in taking a glance at the state list of reimbursement rates. But for a small facility, this causes some pretty serious disadvantages. First of which is staff/resident ratios aren't the best and the quality of care suffers because of it. Also, given this, chances are that wage rates could possibly be on the lower half of the spectrum and could lead to employees who are more than willing to move on as opposed to stay long term. Resident care and safety was an issue as shown in the inspection report, but from what I glanced at, those are more a result of it's age and didn't seem all that uncorrectable. I went to a couple of other web sites to read some comments of the facility and got a mixed bag, some good, some not so good. One consistent was that it appears that management is not very hands on which is something to be concerned about. So, in short, it wouldn't have been my first choice, but if they're looking short term, it may suit your family's need.

Getting back to your issues, I understand that your worried and that you think they made a bad decision. That very well may end up being true, but I think you have to understand that that is your grandma's choice which she has earned the right to make. I know that may sound harsh but I think your not giving her her proper due. I know you disagree with it (personally I agree with you) but sometimes you just have to accept that right or wrong, it's a decision that you have to accept. I would however, and I would do this fairly strongly, let them know that this is a facility that has had issues in the past. You have the inspection report, you also can do many searches and find other reviews and comments from others that you could let your family know about. The more information they have, the more they will rethink that decision. Another thing to consider is how they are paying for it. If he didn't have other long term care insurance, the private pay rates are significantly greater than the Medicaid reimbursement rate. That's why a great many facilities are reducing the number of available beds. Also remember that your grandma is going to have to live off this money also and at some point when your grandpa does pass, the reduction in income can be extremely scary for alot of people. She may well be in a mode where she's afraid to put out alot of money for private pay care which can easily drain $70k a year. That's alot of money and is very much a serious consideration.

Unfortunately there are no easy answers. The best we can do is support them and give them as much information as possible to help.

[Ashlee T.]

How would your Grandma visit an hour away at her age?

In-other-words is it possible that is what they were thinking?

Maybe that is why they decided, and intent to keep an eye to ensure he is not missing anything whilst there...

What if grandma stayed with you or other family where you are? And, he therefore moved to where you wanted?

Is that an option?

The place they all WANTED to put him was 2 hours away from all of us, but because it's a veterans facility (he's a WWII Purple Heart vet) and it's very well thought of, it has a waiting list. With him being in the hospital and a purple heart vet, he is HIGH priority on their list right now. If they put him in the local nursing home as "transition" he'll be removed from high priority off the veteran facilities list.

As for him being here in my town, my grandma would ride with my mom (who visits alot), and also my aunt who comes here frequently to visit her daughter and son in law who live here also. Plus, it's an easy drive. I offered my home as a place for her to stay if there were times she wanted to come for several days instead of just a one day visit. And I know my cousin and her husband would offer the same.

Unfortunately there are no easy answers. The best we can do is support them and give them as much information as possible to help.

I found out last night that, like I said about to CW, they are looking at the local place as a transitional place. I said that's fine if its for a few weeks, but I DO NOT trust that place to take the best care of him. He's can be quite a terd sometimes because of this disease...and I'm afraid people who are not trained in working with dementia patience will get tired of him and be mean to him.

Thanks so much for looking at all that. Your opinion means so much. As of right now, he's still in the hospital, and I'm PRAYING the Veterans place has an opening soon (I'm hoping for a transfer rather than a death. ) so that he can get in there. Yes, it will be much farther away, but I have an uncle there and other people I know that have loved ones there that say it is top of the line quality care and they truly respect their veterans. He deserves that.

Financially, they're very well off. My gran is soooo impressionable. She's a pleaser. And I know she was coerced by my aunt. I'm hoping my mom and other aunt and the rest of us can turn this around a bit. I haven't lost faith yet. I want the best for him. He deserves it.

[pretzel]

Hopefully the VA facility will pan out, but I'll warn you, it may be a while so don't be suprised.

I do wonder a bit about the unwillingness to look at private facilities. I'm hoping that they are at least looking at that option. That, to me, would be a much better Plan B than the facility they are looking at now. I would really hate to think that your gran is being pushed in a direction that she may not want to go just for the sake of keeping the estate in tact.

[Ashlee T.]

Being totally honest, I don't believe any of them are concerned about the estate. They all agreed the VA facility was the best option even though it's farther away because of the references and level of care. After hearing more, I think my aunt is just trying really hard to keep him from going home because I think she thinks if that happens, she'll be back in the position of spending every other night caring for him. She made the statement, "I want my summer." So I think she's saying to use the local place as a transition, but I'm afraid that "transition" might mess up his opportunity to get in at the VA place. The place in my town that specializes in Alzheimers and Dementia has an opening, and I'm sitting here screaming "UHHHH HELLO!?!?!?!?!". I'm praying for an opening at the VA place, OR that they let him come home for a while until there is an opening. They said he couldn't even get up on his own now, but my mom told me that wasn't true, she said during the day (other than on the 2 days he was sick with flu) he gets up and uses his walker to get to the bathroom and back ON his own. The only thing he needs help with is he sometimes forgets where the bathroom is.

So, my friend shared this poem with me this morning, so I sent an email to my mom, my granny, and my aunts. I'm copying it below. I know they dont hear "thanks" much for what they are doing for him right now, and I know it's an exhausting quite unrewarding job. But I also hoped the poem might strike a chord in some of their hearts, maybe as a gentle reminder:

A friend gave this to me this morning and I wanted to share it. You may have seen it before. I think it’s wonderful. Thank you all for continuing to take such great care of Pa, it truly does mean the world.


Alzheimer’s Patient’s Prayer
By Carolyn Haynali

Pray for me I was once like you.
Be kind and loving to me that’s how I would have treated you.
Remember I was once someone’s parent or spouse I had a life and a dream for the future.
Speak to me, I can hear you even if I don’t understand what you are saying.
Speak to me of things in my past of which I can still relate.
Be considerate of me, my days are such a struggle.
Think of my feelings because I still have them and can feel pain.
Treat me with respect because I would have treated you that way.
Think of how I was before I got Alzheimer’s; I was full of life,
I had a life, laughed and loved you.
Think of how I am now, my disease distorts my thinking, my feelings, and my ability to respond,
But I still love you even if I can’t tell you.
Think about my future because I used to.
Remember I was full of hope for the future just like you are now.
Think how it would be to have things locked in your mind and can’t let them out.
I need you to understand and not blame me, but Alzheimer’s.
I still need the compassion and the touching and most of all I still need you to love me.
Keep me in your prayers because I am between life and death.
The love you give will be a blessing from God and both of us will live forever.
How you live and what you do today will always be remembered
In the heart of the Alzheimer’s Patient.

[pretzel]

BD, given what you've said about the VA's waiting list policy, full time in home care could be his best option. Alot of long term care insurance policies will cover it if it's deemed necessary. But, it may have to be private pay for that period if it's a choice that the family makes in order to keep his priority status with the VA. If it's the VA that everyone wants, why would they even consider a transitional facility considering that cost isn't a factor?

Believe me, I understand where your aunt is coming from. Working full time then having to be a full time caregiver is one of the most draining things one would ever have to do. So even though it sounds harsh, if she doesn't have backups and other support in place then she'll be a basket case.

There are alot of excellent in home service providers that could handle the transition period and keep him in the home. I don't know about Ky, but Pennsylvania has a central register database that anyone can access to verify licensure. Also, contact the county Aging Services Department for their list of in home service providers. It won't be a complete list, but it's a start.