As I promised last month, in this blog we will talk about something very important--the financial impact of Alzheimer's.  But first I will bring you up to date with what is happening with Bob.  First of all, I am so grateful that I can go visit him every day if I want to.  I am so glad I can again be with him in this part of the journey, and I am praying that the virus doesn't surge  and shut things down again.  I go there about every other day, and usually just sit and hold his hand.  He still has a very strong grip, and will not release when it is time for me to go!  He seems very engaged and tries to get some words out without success.  Except the other day after I brushed his teeth he said "Feels good" and one day when I told him I loved him he responded "I love you too."  But the main problem right now is that it seems like his brain is not telling him to eat.  I take his favorite treats for him, such as raspberries and vanilla ice cream, but he just will not open his mouth, even when I touch the ice cream to his lips.  The staff at Hillside concur that they are having the same problem, and even when he gets it in his mouth, he just holds it there.  Now I have found that when I can sneak an M and M in his mouth, he will chew it with relish!  He has started losing weight, and now weighs less than when we got married.  Now he is taking a long time to feed, as opposed to when he ate heartily, and I so appreciate the patience of the caregivers that feed him.  He still is taking liquids fairly well, but they have to be thickened, or he will choke on them.   As Bob and I discussed many years ago when we made our living will, there will not be a feeding tube.  This just seems to be an ongoing progression of the disease.  

Now for the meat!  First of all, I cannot highly recommend enough that you use and elder care attorney.  They are costly, but in the long run can help with your finances and will probably save you money in the end.  And it is important to find someone you are comfortable with.  Some will give you a free hour of consultation before you sign up.  The elder care attorney I had used for years dropped dead of a heart attack just before Christmas at age 65.  I was devastated, as he would have regular conferences once or twice a year with me, daughter and son-in-law and my financial planner.  That way, they could determine where we were and if we needed to do anything financially, like division of assets (which I will address later).  No one else in the firm was wanting to do that, so word of mouth led me to another lady that I have now signed on with, and I feel very confident with her. 

The division of assets is a very important thing to know, and I am forever grateful to the friend that first told me about them when she learned what I was facing.  This is why it is important to have an elder care attorney, as you can just get a form off the internet, or have anyone help you with it, and you could do it at a totally wrong time.  The attorney can look at your assets, and determine when it is time to divide the assets between the spouses.  I could then keep my half of the assets and just use Bob's assets for his care until he would spend down to $2000 (in Kansas) and then he would be eligible to go on Medicaid.  But it is so different in every state.  For instance, in Kansas, my IRA is protected, and in Missouri, just a few miles away, it isn't, and I would have to also use mine for pay for Bob's care.  Another thing to mention is that after death, when the house is sold (homes and cars are also protected) usually the money has to go to the state until the amount that was spent on Medicaid (Not Medicare!) has been repaid.  But an elder care attorney can help you with ways around that.

First let's talk about options that can be explored before dementia becomes a factor. Becoming more and more popular, at least in this area, are the CCRCs--continuing care retirement communities.  They are typically operated with a buy-in plan, though some are now offering monthly rent in their communities--to compete with other newer facilities, I imagine! The buy in plan covers your care from the time you move in independently, through assisted living, and then nursing home care.  Some also have dementia care and rehab.  And now I think they are more apt to help you set up a plan that would leave assets to your heirs upon your death than they used to be.  The ones I have toured typically want you to live in independent living for at least 2 years before you move to more care, so they will assess your mobility etc. before you move in.  They are very social, with a lot of amenities and activities and have meal plans.  You will also pay a monthly fee to cover utilities, cleaning, food, etc.  Be careful though!  Some stay at the monthly rate you sign in with though out your life there, with only cost of living increases.  Others, you start at one rate, and the the rate increases as your level of care increases.  So there is a lot to thing about.  If you should put down a deposit while you are on a waiting list or while you are thinking about it, be sure to ask if the deposit is refundable.  Unfortunately none of us has a crystal ball we can look into to see how our lives will end.  One can only hope you will die in your sleep!  But CCRCs can help give peace of mind that you won't have to move again.

There is also a huge boom in independent living facilities which may or may not have assisted living available that are month-to month rent.  There is no continuum of care.  They usually have meal plans, but there is a facility right down the street from me that does not.  These facilities all have beautiful amenities, opportunities for socialization, and come in all different price ranges. (And NO housework, as they do the cleaning!)  Also, home health agencies can come in these facilities and help with medical care for the short term, or longer term I imagine depending on your insurance.  A thought about these facilities is that you can put a deposit down while you are on the waiting list or just want to wait awhile until you make your final decision. Typically, you would get the deposit (usually about $500 ) back if you decide you don't want to move in, or it would be applied to your first month rent if you do move in.  So you could conceivably have deposits down in more than one place.  This is an overwhelming thing to think about, but  probably a year in advance of moving in is a good timeline to start thinking about it.  There is a real problem brewing however, and it will only increase as more of us age.  There are now so many of these facilities that they can't find staffing, and many places are working short, or using agency staff which is a downside for many reasons.  Workers are also constantly moving from place to place where they can maybe get 50 cents more an hour, so the loyalty and dedication, and consequently, resident care suffers.  

Now let's address what happens when there is the uneasiness  you feel when you realize "something" is happening to your loved one.  And then the terror of the Alzheimer's diagnosis happens.  Your spouse, your soulmate who you have so often relied on cannot help you make decisions, cannot make them anymore.  You suddenly realize you are on your own.  First of all there is the option of the one with Alzheimer's remaining in your home.  I had promised Bob I wouldn't put him in a facility.  "I'm a nurse.  I can do this, right?"  I really wrestled with this, and I know a lot of the friends in the support group do too.  But when it comes to the point where it is unsafe to have them in your home (Bob WAS going to fall down the stairs) and the caregiver is so worn out that they will die first, it is time to rethink things.  I know all of us in the support group asked the question "But how will I know when it is time?"  A sage member of the group, whose husband had had Alzheimer's for 18 years said, "Oh, you will know!"  And it was true!  But some of the group still have their loved ones at home (one moved him back home after being in a facility) and have agencies come in to help bathe, etc.  The Alzheimer's Association can assist you with this and make recommendations.  

Then  you finally realize and come to the conclusion that heartbreakingly you are going to have to look at other options.  It is so important to think about this while you still have the option to choose, and look around so you can have strategies (maybe several) in place, so you won't be unprepared and have to look frantically for a place at the last minute when there is a crisis.  If that happens you will probably end up at the only place that has a bed (and there is a reason that is the only place that has a bed.)  Or they will tell you they don't have a bed when they really do because you are coming in under Medicaid.  It has been SO difficult in the last year, with families not being able to tour facilities because of COVID and facilities not admitting new residents.

One thing I forgot the last time in my blog when I talked about finances is the veterans benefits.  This is a wonderful resource, and the spouses I know that have their loved ones in a veteran's home at least in this area, are very satisfied.

Another resource I can't recommend highly enough is hospice.  Bob was on such a downward spiral when he went into the facility that he qualified immediately.  You have to have a doctor's order, which is usually easy to get.  Hospice was such a blessing when Bob was in the facility, but some of the hospices come to the home as well and help with bathing, etc. It is covered by Medicare.  Bob remained on hospice for 3 years as you are allotted more time with dementia.  One of the big criteria for using hospice is weight loss and Bob had to go off hospice when he went to the new facility and he started gaining weight.  He may be eligible again, if he keeps losing weight.  Hospice doesn't pay for the facility, but they pay for a lot of the equipment and supplies, such as lifts, the Broda wheelchair and incontinent supplies (which they don't charge for at Hillside).

One thing that has been important to me as I looked for a place is that is has local ownership.  The owner is on site every day at Hillside, and I think that makes a huge difference.  Places that are a part of a big conglomerate just don't have the atmosphere I was looking for.

One thing to keep in mind is what happened with Bob.  At some point, he no longer needed dementia care and needed to be moved to a place where there was more physical care.  So where he is now at Hillside village is long term/skilled nursing, but there is also an assisted living wing.  And I have only seen one new face when I returned after COVID.  That speaks volumes!

Then there is the only recourse that some have and that is moving in with your children.  (Don't panic Valerie!)  and I think all of us would agree that option is not ideal.  The pace of the world today and the generational gap is such that the dream life like the Waltons had is no longer what it used to be.  There are the granny pods in the back yard, and the in-law suites now.  But as my dear friend Mac observes, there needs to be a contract drawn up between the two parties and each needs to state their expectations of what it will take to make it work.  The realities of how it would change everyone's lives, especially if there is dementia involved need to be addressed.

I am going to end this blog with the same quote I used when I wrote about this subject before.  I can't do any better now!  It is from Guiding Light Ministries International.

"There IS a place where we can abide, whatever external circumstances may come, where we can maintain a sense of peace and joy throughout whatever events may be unfolding in our lives.  And it is within each and every one of us.  You must find that place..for there is nothing else that can compare, and nothing else that will ever satisfy the soul of man!"

Whew!  I am exhausted just thinking about all this!  I just hope it is helpful to someone.

Betty