Helpful Suggestions Eight Years In: Part 1

Bill_2001

My dear wife has suffered with vascular dementia for eight-plus years now. After this much time as her caregiver, and after following many of you on this forum, I would like to offer some very helpful suggestions. Many of you are struggling with this ordeal, and you may find these suggestions helpful coming from someone who has learned through many years of trial and error. Some of these will be easier to accept than others, depending upon where you are on this journey.

Prepare for the Future.

1.      See a Certified Elder Law Attorney (CELA) as early in the disease as possible. The sooner the better. Spend the money to get your documents in order. You will need a set of documents for your spouse with dementia (with you named as Durable Power of Attorney). You will also need a set of documents for yourself, naming someone other than your spouse as your Durable Power of Attorney. At a minimum, get these documents done for each of you:

-         Durable Power of Attorney

-         Durable Power of Attorney for Health Care

-         HIPPA Authorization

-         Living Will

-         General Will

Once you have these documents, make copies for your close family members (or friends). Send yourself a PDF version, and store these in your email account and on your phone. I was once trying to speak to a medical professional about my wife, and needed the HIPPA Authorization. I was able to send it to them right from my phone. This is very convenient!

2.      Update your beneficiaries. Your CELA will advise the same. Update beneficiaries for all cash accounts, investments, retirement accounts, and insurance policies. You can be your spouse’s beneficiary. As for yourself, you may name an adult child, friend, or family member. Or you may name a trust that will take care of your spouse if you are gone first. Also consider property deeds and vehicle titles. You want to avoid problems dealing with documents that your spouse will no longer understand down the road.

3.      Visit and select two or three memory care/nursing facilities, in case placement becomes necessary. Have these in mind in case emergency placement is needed (for example, if you need surgery for yourself). Connect with them every now and then, and make a note of the monthly cost of care.

4.      Map out how you will pay for long term care, if it becomes necessary. Your CELA and fiduciary financial advisor can help you plan. Consider all income and resources that you can use to pay for care if or when the time comes. If you plan early enough, you will have more time to save and plan for this expense. List out your income and your spouse’s income separately, and the same for your assets and your spouse’s assets (such as retirement accounts). This is a very important mental exercise, as you can plan on using only your spouse’s income and assets to offset the monthly cost of long-term care. Remember that you will still need to cover the cost of your own living once your spouse is placed (or no longer with you). You may also want to work with your CELA and financial advisor on Medicaid planning, or perhaps avoiding Medicaid altogether.

5.      Place two “File of Life” cards (one for you and one for your spouse) on your refrigerator, where EMT personnel can find them. Fill them out with your medical conditions and medications. Important: On your spouse’s card, write “DEMENTIA – (NAME) CANNOT EVER BE ALONE.” On your card, write “MY SPOUSE (NAME) HAS DEMENTIA AND CANNOT EVER BE ALONE.” On both cards, write down a family member or friend’s name and phone number for emergency contact. Add an envelope on your refrigerator with copies of your insurance and Medicare cards, and any other emergency information. Update them regularly.  List the care homes you have chosen in the event of an emergency. Carry smaller, more basic versions of these cards in your wallet.

6.      Begin winding down expectations for your spouse’s executive functions. If you are early in this journey, you may still have a spouse that manages money, medications, and she may even still drive a car. Be very aware that these functions will fade – it will happen faster than you expect. This is very important: If your spouse seems to be confused with anything that requires logic (for example, paying bills), then you can BE SURE that your spouse is having problems with all executive functions. You MUST stop to think this through! Many daily activities are dangerous if not done correctly. Cooking involves heat and fire. Driving involves the safety of others. You will take over all these tasks sooner than you think.

7.      Try to determine when your spouse began their dementia journey. This is important for planning and tracking progress. I have seen this question come up now and then, and it is nearly impossible to be precise. Most of us noticed that something was “off” with our spouse, and it may have been months (or years later) when a vague diagnosis was made. Here is my suggestion: The day that you “knew something was wrong” will probably stand out, so you can use that as the starting date. If you follow the seven-stage model, Stages 1 and 2 are mostly unnoticeable. Looking back, those were the days that my wife seemed distant, but nothing alarming. It is at Stage 3 when we usually notice that something is clearly wrong. Following my own rule, my wife had an unmistakable episode in October 2015. That became the start date for my records. You may find that you remember a similar experience. Stages 4 and 5 were the most difficult for me – a lot of denial and missteps. Stage 6 has been somewhat easier to manage, simply because I have adapted, and my wife is no longer interested in anything enough to be at risk.

Manage Daily Life.

8.      Consider stop-gap alternatives to expensive full-time care facilities. Adult day care, part-time in-home care, and friends and family may be viable alternatives in the near term. Ask your children to help with care on a rotating basis. If they need an incentive, remind them that long-term care costs will use up their inheritance. (My wife and I have no kids, so this option is out.)

9.       If you are exhausted, you may find it is more cost-effective to hire help with things not related to caregiving, for example, housekeeping or yard work.

10.  Lights and music! Turn on some lights, let the sun in, and play some music! If your home is dark and depressing to you, so it will be for your spouse.

To be Continued.

M1

Bill, this is spot on and beautifully written. Bravo. I wish there was a way to post it where it would always be immediately accessible to new members. We end up giving the same advice repeatedly and this summarizes beautifully. Thank you!!!

harshedbuzz

Thanks for taking the time to write and share this.

Can we pin it?

JDancer

https://alzconnected.org/discussion/comment/192759#Comment_192759

I agree, everyone should read this.. I've been on this forum for a while, and this post gave me a lot to think about. As this information moves down the queue, I'll make comments, so it will rise to the top.

JDancer

Dunc1129

In the upper right corner of the post, there is a small banner that is a bookmark. Click on the banner and it will bookmark the post. At the upper right of the main page, there are quick links and one says bookmarks. Use this to save posts that you want to return to time and time again.

Bill, this post is fantastic. You might consider expanding this and publish as an e-book or article as it is so helpful to those starting their journey down the Alzheimer road. My journey ended a few years back but I still stay with the message board and keep up with research as I am often a resource in my community for those seeking information. Thanks for all you do

Jeanne C.

Ok. Maybe I had too much coffee this morning, but I took a stab at setting up a public group to capture incredibly valuable posts (like these two posts) so new members can easily find them.

https://alzconnected.org/group/32-new-caregiver-help

Jeanne C.

PS thank you, Bill.

Anna2022

https://alzconnected.org/discussion/comment/192779#Comment_192779

This is great, Jeanne! Thank you!

Anna2022

Thank you, Bill! This is fantastic.

In addition to the new "Group" that Jeanne just created, may we have permission to copy onto our clipboard and post this when new members ask what to do?

midge333

Thank you!

DCCEPEK

YOU ALL ARE AMAZING!

Mimi50

https://alzconnected.org/discussion/67580/helpful-suggestions-eight-years-in-part-1

Very good advice. My husband was diagnosed with Vascular Dementia A year ago. I really hadn’t thought about looking at MC places.