My DH was just diagnosed with Alz

joannefn

My Dh was just diagnosed with early stages of Alzheimer’s. He’s doing well now but we are both overwhelmed with making decision s for the future. Do we stay in our home of 45 years or downsize to an adult community? If we stay put, how to prepare to make home safe? How and where do I get help when I need it? What legal help is available ? Is there support from Medicare?
I’m overwhelmed and don’t know what to expect so it’s hard to plan.

Jeanne C.

I'm sorry you need us, but welcome. I think you'll find the people here to be kind and knowledgeable. You asked a lot of questions. I'll try to answer a few. Others will be along to help as well. I'll also point you toward the new caregiver group where we save a lot of useful information.

First the legal: you're going to want to see a certified elder law attorney (CELA). You can search by location at nelf.org or naela.org. They will have expertise to help you set up POA and trust documents as well as navigating long-term care options in your state. For example, our CELA was able to help me preserve assets while getting my husband qualified for Medicaid.

So, Medicare doesn't provide much for dementia care. Long-term Medicaid provides a lot in our state (DE) such as in home aides, supplies, and even meals. It varies by state so definitely seek an expert.

Where to live: my recommendation is to live where you are going to want to be after everything. Consider your support network, where you have family and friends, access to medical care. Think of how you can make your life easier now and better in the future.

There's so much at the beginning of this journey. Learn what you can, get a good doctor or NP for your husband. And get the legal stuff handled ASAP. Don't hesitate to ask questions here and vent when you need to. And be kind to yourself.

New caregiver group:

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

Jgirl57

Welcome ! Jeanne C gave you great advice. Read as much as possible about Alzheimer’s and find out where the Area on Aging council is in your area. They are a great resource . Also Tam Cummings has a great staging tool so you can see what is typical ( but everyone is different) for each stage . That might help you plan. Others will chime in and let you know how to find references that are helpful. Thinking now about the future is good but sometimes difficult .

Quilting brings calm

First- Breathe! This is a marathon not a sprint. You don’t have to decide everything at once. Moving can be held off a little bit. Get your financial and medical paper work in order first while he can still be involved. Medical power of attorney, durable power of Attorney ( do yours too), check all his financial accounts for beneficiaries, get your name on any bank, credit or utility accounts that you aren’t on.

There a ‘new person’ group in the groups list that has a lot of resources in it. It’s there for newcomers like you. But don’t think that means you should just go there. We want you here too reading posts and learning.

M1

Hi Joanne, you have come to a good place for advice and support, the best in my opinion. Would definitely put legal and financial planning at the top of the list to do asap. You want durable power of attorney (not springing that requires a doctor's input on competence). You can find certified elder law attorneys listed by location at nelf.org. look at your wills also- he should not be named as your executor or POA. That's kind of sad, i redid mine in private so that my partner's feelings would not be hurt.

another thing to think about now is your bucket list. If there are any trips you want to take, do it now while he still can. The day will quickly come when it's too hard and too disruptive. People with dementia thrive on routine.

Plan ahead for things you need to be responsible for. Two of the biggest hot button issues are finances (don't leave him with unlimited credit cards, unsupervised checks or bill paying), and driving. If he truly was diagnosed with Alzheimer's and not mild cognitive impairment, the sooner you get him out of the driver's seat the better. There are lots and lots of discussions on this topic.

You asked if there is help from Medicare and the sad answer is no, except at the hospice stage. All home care or memory/facility care is either going to be private pay or through Medicaid. Medicaid coverage varies by state. A certified elder law attorney can advise on this also. There are ways for middle income people to qualify but it's complicated.

A book frequently recommended for newbies is The 36 Hour Day.

FredW

Joannefn, first, my heart goes out to you. You must be reeling with emotion. Admitting the reality of this disease takes some time.

Be prepared for tears, challenges like you never experienced, and a journey that will test you in many ways.

Read, seek help, plan ahead and find your own way to be strong.

This is a great discussion group, but initially I could only take it in small doses. There are no good stories here. This disease has no happy endings.

Cherish the good times, survive the difficult ones.

harshedbuzz

@joannefn

Hi and welcome. You've already gotten some excellent advice. For reading material, I would add "Understanding the Dementia Experience" which you can find linked in "Groups/New Members". It's a free download that is relatively short and can help you understand the losses in dementia and how they present behaviorally which is useful.

Another thing folks often suggest is making a stab at bucket list items assuming your DH is in earlier stages.

Deciding where to live is important. Some folks find it comforting to stay where they are and perhaps make design changes to the bathroom as needed. Medicaid planning can factor into this as well as states limit the value of the residence of the community spouse; if you're "house rich" this might be in play.

Another consideration is maintenance going forward. Chores and maintenance can be an issue. Sometimes the caregiver finds these additional responsibilities challenging on top of everything else— as a PWD progresses, the spouse assumes all of the adult tasks to keep the household afloat. Sometimes when they PWD is used to being the DIYer, they can become agitated at someone else doing "their job". Even if you're used to hiring professionals, it might make sense to revisit what you spend on such things as dementia gets expensive. I have a friend who has a home with considerable grounds— she pays $450 every time it is mowed— that could buy about 13 hours of respite when you need to get a haircut, see your doctor, have lunch with a friend or just wander around Home Goods.

When you say "senior community" what do you mean exactly? Are you talking about a smaller more accessible home you own in a 55+ community where outside maintenance is covered by your HOA? Or are you talking about a CCRC with all of the amenities of a 55+ and meals, housekeeping, transportation, etc. where you "buy-in" and start in an independent apartment/cottage and move through to assisted living, memory care or the SNF as needed? If the latter, be very careful in your vetting of such a place— sometimes the IL and AL are lovely, but the MCF and SNF might be much better somewhere else. Some of these places might be beyond your reach given your DH's diagnosis— a few of the ones near me actually give cognitive testing to prospective residents and don't accept those coming in with dementia. Residents who move in and develop dementia can stay, but it's not what they do best. There's even a recent thread here about a couple who moved in to such a place with a plan to transfer the DH to MC only to be told that their MCU won't accept him based on his form of dementia.

When my dad developed dementia, I moved my parents back to where they raised me. Mom almost died with dad as her medical advocate earlier that year causing me to get a call from the hospital to come down asap. (This is why your DH shouldn't be your POA and why, ideally, they should be local) They had denied his issues, waited for an emergency (dad had a psychotic episode) and came north only when it was too late for them to actually handle the move. Dad had progressed to a point where he was completely delusional about what he wanted (mom tried to engage him initially— he wanted a penthouse one the cutest street in the adorable downtown here but wasn't willing to pay more than $300/month. LOL, they cost $1.6M) and he could be left alone— so I moved enough things from the MD house to see up a 55+ apartment, then staged and sold that house and rented the one in FL for the season. Once the MD house sold, mom decided she really wanted homeownership, so we found her a nice carriage house in another 55+ community walkable to everything she needs and moved the contents of the apartment there. Once we got her settled there, I went back down to FL and got their personal items and car shipped north and then sold the place for them. It was not an ideal way to do this.

Mom's in stage 8 now that dad has passed. The house is a nice fit, but she's much older than most of her neighbors and has not really made a social life for herself. TBH, I think she would have been much better served by the CCRC she rejected as the residents are more her generation and the social piece is more baked in.

If you do have family encouraging you to move closer so that can "help", it is best to flesh out and agree on what "help" looks like to both parties. Sometimes caregivers are disappointed by their adult children who insisted they move so they could help only to find out it meant the son might mow the lawn or the daughter pick up groceries when they do their own shopping. If you're expecting hands on caregiving for a weekend so you can travel to visit family, be clear about that.

HB

Crkddy

Joannefn, I'm so sorry that you and your DH are beginning this long journey. As you say, it is overwhelming. You have already received some good advice and I'm sure you will continue to do so on this site. I also suggest that you take the time to enjoy each other while you still can. It may sound difficult but try to maintain your routine in that regard as long as you're able. All too soon you won't be able to do the normal things together that make life so meaningful. So do them now.