My list of advice...

I always thought that if I turned my blog into a book, I would include a list in the form of an 'afterward' of what I've learned while going on this journey with my Dad.  This list would include advice or what to expect...

When I hear about friends who are about to embark on an Alzheimer's journey with a relative, I feel compelled to share what I've learned.  It's possible that if I was armed with some of this knowledge, it would have helped. 

A recent conversation with a friend has prompted me to make my list.  Make of it what you will... and feel free to add your own advice in the form of a comment.

My list is geared more toward finding a facility that works for you etc... since I don't have a live-in Alzheimer's patient, I don't have much to add in the area of being a full-time care giver at home.

(I would say the first 3 on this list are incredibly important)!!

1.  You may not think that your relative's dementia is "advanced enough" to be in a lock-down, Alzheimer's facility, but chances are that by the time you have started considering that option, it's absolutely a necessity.

Our Dad was 69 years old (relatively young for an alzheimer's patient), completely ambulatory, very talkative/active, dressed himself, put his dentures on... etc, so we thought that he just needed partial supervision and care.  We learned the hard way after he ran away from a non-secure facility.  In reality, since we were not around him all the time, we had no idea how bad things had gotten and how much he needed that secure environment.  His safety and our peace of mind became more important.

2.  Once your loved one is taken out of their personal/familiar environment, and placed in a home, you will inevitably see a decline in memory, confusion, or behavior.  This is normal.

My Dad could no longer clean his dentures, he was confused about where the bathroom was, and he was constantly trying to escape among many other things.  Every move results in a decline.

3.  Move your loved one to a facility close to you.  There is no point in keeping them far away just so that they can stay in a familiar city or town.  A move is a move is a move.  Whether it's down the street or across the country, your loved one will be equally confused and upset about their new home.

When we moved my Dad, he automatically forgot where he had lived for the past 20 years and instead could only remember his childhood home in Pasadena.  In some of the worst months after the move, Megan and I would need to visit him up to 4 or 5 times a week, so it was imperative that we be nearby.

4.  Do not allow your loved one to take his/her valuables to their new home.  They will get lost or 'stolen'. 

Unfortunately, there were two items of value that we are sorry to have lost.  A turquoise watch and ring that we let him take with him.  In a home, many of the residents "shop" in the other resident's rooms.  My Dad was a big shopper and we always found things that didn't belong to him.  Naturally, things get moved around and none of it is done maliciously, but we couldn't expect the staff to take care of my Dad AND all his things...

5.  Once you truly do believe that your loved one needs help, trust your instinct, gut, and intuition.  

With this disease you learn quick and you learn to quickly trust yourself.

6.  Listen. And Agree.

When my Dad would get upset about his living situation, we would usually try to change the subject.  But once we learned to listen to him, and re-assure him that we will fix the problem tomorrow, he would become happy and trustful again.  He wanted to be heard and he was happy when we agreed with him.  There is no explaining or reasoning with an Alzheimer's patient.  Appease them as much as you can in the moment.

7.  Use the things that they hold dear.  By talking about their hobbies or loved ones, they are able to keep a sense of who they are for a while longer.

Any time we talked about The Dodgers, Fishing, Frank Sinatra (or any music for that matter) my Dad came to life and felt like himself again.

Dad also likes to laugh and tell jokes... and even if we had no idea what he was talking about, laughter went a long way every time.

8.  Be prepared for anything and everything.  This is the most unpredictable disease.

9.  Form a relationship with the care-givers at his/her home.

10. Don't be too hard on yourself and don't let guilt get in the way.  There are professionals who know how to deal with this disease and that's why a home can be a wonderful place.  You have the chance to spend quality time with your loved one instead of being their full-time caregiver.  

(For those of you who are full-time caregivers... your strength, commitment and love are immeasurable.  And I commend you for that.)

Please feel free to add your comments and opinions.  :)

The Future

So, we've put it off long enough... it's now time to take action on Dad's financial situation and his future. I'm going to be honest and really break it down. It's a tough situation.

Dad's monthly income from Teamsters and Social Security is $1800 SHORT for what he owes Whittier Place each month. We've been supplementing that difference with his savings which is dwindling fast. It comes down to this: He can only afford to stay at Whittier Place through December. And we should probably move him faster than that so that he still has some savings left.

We possibly could have chosen a cheaper place back in April 2010. But we had to take into consideration location, amenities, and the fact that we were desperate. And, Whittier Place is cheaper than most for the quality. But what would you do? Stick him in a home where there is no outside area, the hallways are dark and dingy, and every resident is 90 years old and on their death bed? Because we saw plenty of those and it was depressing to say the least. Let's remember that Dad is only 71 years old.

So, we can't look back at the decisions we made, only the future. All I can say is we gave him a year and half of an amazing home filled with laughter, love, and friendly people who genuinely care for him. And it's going to break our hearts the day he moves out. Literally.

So, what are his options?

-Move him to a Board & Care which will be lower in cost but still probably not low enough. It's a house with a couple full-time care givers and maybe 5 other residents. We originally tried to move him to one in April 2010 but he ran away in the rain and we found him on the streets of Huntington Beach. They are usually not equipped for Alzheimer's patients. He would walk right out the front door or climb out the window.

-Move him to an extremely cheap and disgusting Dementia Ward where he'll never see the light of day because the less expensive ones don't have a garden or are on the 2nd floor of a building and the residents never go outside. The thought of him not being able to go outside and being locked indoors like a caged animal made me cry. I don't know if we could even find one cheap enough. Also, many of the cheaper facilities are really far away from Me and Megan. Whittier Place is already so far away.

-Appeal to MediCal for the Assisted Living Waiver which is really just for people who are in Skilled Nursing who need to move to Assisted Living. But he does fall under the category of needing 24 hour care like Skilled Nursing, and technically he lives in an Assisted Living facility with a dementia ward. It's a long shot and probably won't work.

The only hope we have is that the Veterans Association is opening up a huge Alzheimer's facility in Los Angeles and we were smart enough to put him on the wait list a while back. The home is supposed to open in February 2012 (but you never know if that will be pushed back). Dad will get an application and it's supposed to be first come first serve. It's a lot of 'if's' to put our hope on.

Okay, let's just say that it all works out and he can move into that brand new facility in February. I'm sure you've done the math. Where is he going to go for the month of January or possibly part of February? Do we move him soon to a cheaper place and then move him again in February? 2 moves? Talk about trauma to both him and us! Or do we fund-raise to keep him in Whittier Place through January? Or maybe they'll strike us a deal for just one month. And what if he doesn't get accepted into that new facility or the date of the opening gets pushed back?

This is what we're dealing with right now. My Mom has been making a lot of phone calls to help us out and we're laying all the options out on the table. One resource we called said nicely, "His income is actually quite high, I get people who only have $500 income/month. And they don't know what to do either."

All I can say is I'm fired up to fund-raise for the Walk this year. An angry fired up. These are tough, desperate situations and it's only going to be more of a drain on the government when the Baby Boomers are added to the mix. We need resources and awareness and help! Oh, and a cure would be nice too.

-