My stepmom and I are just beginning to deal with my dad's dementia care.

gb2847

I am new here, and I need some help.

We have known about my dad's dementia for about 7 years. It has been a slow decline in memory with a huge uptick in anxiety. The primary doctor ruled out Alzeimer's, but we aren't sure if that was done correctly. He has all the signs of being in the middle-stage.

Now, his decline seems to be progressing faster, and I sense the need to plan for the next stage, i.e. home care. My stepmom is amazing and very loving, but she doesn't feel ready to face that and plan, yet. She is new to handling bills, household business, etc., and often feels overwhelmed. I don't want to wait until it becomes an urgent matter. She knows this, and also knows that I won't push, so we are on great terms.

My husband's parents and my grandmothers all had Alzheimer's, so we are familiar with what to expect. My stepmom also knows that my DH and I are here to help with caring for my dad, and she is counting on that.

Do any of you have any suggestions for gently helping my stepmom to accept the need to plan for what is coming (with my help, to ease the burden) before it is urgent and more stressful? I really feel like time is running out on his being alright w/o constant supervision.

SusanB-dil

Hi gb2847 - Welcome to 'here', but sorry for the reason.

Could you print out a document with the stages to show your stepmom? Maybe having something tangible would help.

Iris L.

She needs to get her legal documents prepared before it's too late.

Iris

M1

Welcome to the forum. Iris is right, absolutely necessary first step is to see a certified elder law attorney (CELA) regarding power of attorney for finances and healthcare. If you have a good relationship with her, you and your stepmother can go together and discuss who should have these authorities (if she is also older and/or has her own health problems, it might be better to have it be your or your sibling). The attorney can also help you all with financial planning, both for his upkeep should he need facility care, and to be certain that you don't run into financial conflicts later on (these are common in blended families).

Beyond that, if you read a lot of threads on this forum, you will learn a lot about what to plan for. You might encourage her to visit this site also. Wish you well.

ButterflyWings

What a great *stepdaughter you are. Supporting your dad's spouse and primary caregiver will be the best way to help ensure the best care and compassion for him, if you all can be aligned and work together. Dementia is a formidable opponent, so when families can pull together, it is better for your PWD LO and those who are sadly losing him to this disease.

Re: "Planning for what is coming..." it sounds like the urgency is already here. Ditto what the members have said already. Securing Durable POAs with a certified elder law atty's advice, is of utmost importance while he still has the capacity to sign off on his choice of designated alternate decisionmaker. It is best that there be one person so designated (usually the spouse), with perhaps you as the 2nd if something were to befall her (hopefully not). Do you have other siblings? And is your dad cooperative at this point?

Protecting finances is a close 2nd to getting the POAs in place. Financial mismanagement is a very early, sneaky, symptom of many of the dementias. My story is one in the "don't let this happen to you" column. There is a time before it is obvious in mid-stages, when tremendous damage can be done to finances and future security while we erroneously wait for the right time to get our PWD LOs to agree, that its time to let someone else step in. That agreeing usually won't happen, and meanwhile, the people with the un-impaired brains have to use them.

Sometimes, the best approach is for your stepmom not to discuss decisions with your dad especially if he is having increasing anxiety. It may need to be don't ask, don't tell, as soon as the POAs are in place. Maybe even sooner, at least in my case -- as spouse I had some rights and responsibilities regardless and his Drs told me to begin using them immediately upon diagnosis to protect us both. So much damage had already been done, some irreversible and assets irretrievable.

There are great links in the AlzConnected Resources tab above, and you can select the Solutions Center from there. Here is one on the financial piece. Don't sleep on this, seriously. Predators etc. https://www.alz.org/media/Documents/alzheimers-dementia-planning-for-the-future-ts.pdf

And for the best overview of how dementia works, urge her to read this. https://www.smashwords.com/books/view/210580 (Its for your DH and you as well as other friends and family who may be supporting your Stepmom as she adjusts QUICKLY to what is already unfolding invisibly).

So very sorry you have a need for this community but very glad you found us. I do hope your stepmom might read some of the threads also, or call the 1-800 helpline to get info on resources, and so forth. Best of luck navigating this rocky road. You all are not alone.

harshedbuzz

@gb2847

Hi and welcome. I am sorry for your reason to be here but pleased you found us.

It sounds as if your relationship with your stepmom is pretty good. Your stepmom sounds a bit like my own mom in terms loving wife who is diagnosis-avoidant and overwhelmed at the prospect of being the adult-in-charge. I am a de facto only, so it fell to me to help mom find her feet in this new role which she both feared and resented. In the days around dad's diagnosis, I assumed the role of logistics and decision-maker. Sometimes, I made the choice for her (new doctors and her apartment) and sometimes I gave her a few curated options (like I toured a dozen facilities, but only took her to the best 3 and let her decide). I convinced her to move nearer me, sold bother her homes, set her up in an apartment and then a house, moved them and all their stuff, assembled a medical team for both and got her to a CELA. I also attended all of dad's doctor appointments, in part because he gave ridiculous information, and she went along with it. Later, I helped her make choices around a memory care facility.

As a stepdaughter, you might not need or be as able to be an influence to the degree I was. Does DSM have adult children of her own who may be looking at this differently prioritizing their mom's well-being over dad's? Do you have other sibs who have opinions on dad's care?

As others have pointed out, the CELA piece is mission critical. Not only does DSM need the usual DPOAs, she needs to consider a primary agent for herself (her child, you, a sibling or friend) because dad doesn't have the capacity. And you, or another sib if there is one, need to be dad's secondary in case she died or was incapacitated. Medicaid planning should be done if applicable.

The other piece is the diagnosis. Have you attended these appointments yourself? You said: "The primary doctor ruled out Alzeimer's [sic], but we aren't sure if that was done correctly. He has all the signs of being in the middle-stage." That sounds a bit off. Normally, Alzheimer's is a diagnosis of elimination where other conditions with similar symptoms are ruled out not the other way around. Most often, a PCP will do the bloodwork to rule out a vitamin or hormone issue that can mimic dementia as well as a CT scan which could show a tumor, loss of brain volume, evidence of strokes and then refer the patient to a neurologist or memory center for further testing that might include PET scans, neuropsych testing, etc. I do have friends who didn't go the neurology route because their parent was in their 90s and they didn't see the point of additional stress for something for which there was no real treatment, but for a parent who is younger, I would want a more rigorous diagnostic process.

FWIW, my mom fought me on getting dad evaluated for almost a decade until a crisis. When he was finally diagnosed it turned out the one of his mixed dementias was treatable and that had it been caught earlier when he might have been able to make lifestyle changes, they would have had a much better quality of life until his Alzheimer's got worse.

In terms of supporting my mom, some things that helped her were-

Printing out short pieces on dementia for her. She didn't have the time to read something like The 36-Hour Day and take care of dad. @ButterflyWings gave you some good ones. This is another one she recommended in a different thread.

Excellent Handout Packet: dementia, stages, CGs, actively dying - Tam Cummings — ALZConnected

Initially mom was resistance to caregiving strategies I offered, so I took her to an IRL support group where the other members-- her peers-- offered the same advice which she took to heart because she felt they knew what they were talking about. I also got mom lined up with a psychiatrist and therapist just for her. So many of their docs always put dad first, and this was the safe place where that didn't happen. As you dad progresses, your DSM will need respite. This is probably the best thing you can offer them- a regular date that she can count on to watch dad so she can see friends or family. Maybe even a long weekend of dad-sitting if she has reason to get away for a bit.

HB

MN Chickadee

Those conversations can be difficult but do try. My father was in denial and hard to get into decision making mode as my mom's Alzheimers progressed. I found it went much better if I did the leg work. If legal paperwork needs to be done you could ask if it's ok for you to make an appointment for it. Maybe say you and your spouse are doing yours, you can all get it done together to ensure everyone is covered. Any services they may need, from a cleaning lady to a hired caregiver would be something you could offer to research and vet and do all the work on the front end. Sometimes the main caregiver does not have the bandwidth to think about this stuff let alone do research and phone calls. Their free time and free mental space is usually in short supply due to the unrelenting care needs. You might also suggest a monthly check in, just say you want to do a little family meeting to see how things are going and how you can support her the best. As long as you are both reasonable people and you make it about supporting her I would think it should work out.

I also took matters into my own hands in some ways. Dad was convinced they would not need a facility for a long time if ever. I could see the writing on the wall and put mom on some waitlists at memory care homes without telling my parents. I toured a dozen, chose the 3 that I thought were best, and put her on the list with my phone number to contact. They contacted me every few months for a year and I just said we weren't ready. Dad suddenly hit a brick wall when mom's incontinence got bad and her behavior was getting difficult and he could not go on, wanted to move her immediately. His own health was suffering and the situation was untenable even with me and my sister providing lots of back up. I was glad I had done all the leg work ahead of time and we got her into a facility really quickly. You could at least have him on some lists as an emergency plan B and plan C. This is really important because things can change suddenly with a person with dementia's needs/condition OR their caregiver's mental and physical health. Doing this work in a crisis is not only stressful but also doesn't always yield the best results and can limit options. I found it was helpful to educate myself on the disease and progression, do some work behind the scenes, and then wait for dad to catch up to me and be ready to discuss it or face it.

gb2847

Thank you, everybody! @harshedbuzz, now they do some sort of imaging to see plaques or some sort of growths on the brain that is unique to Alzheimer's. I don't know if the correct imaging was done.

My dad can still have a good conversation, and is in the moment. He just can't remember much, except very long-term memories. It is still very difficult for him to give up his autonomy, so I don't know if he will sign anything like a POA. He does seem to be softening lately as he declines, though, so that may change soon. He did relent last year, and leave all of the finances and family business for my DSM to handle.

When my DSM can get him to go to the doctor, she takes him, but he won't let her say much. DSM and I had to print up a document which details his dementia symptoms, and how bad it is getting, because, the doctor would ask how he is doing, and he'd just say that he is fine. DSM couldn't say anything in front of my dad. We signed that document and I hand-carried it to the doctor's receptionist. I called ahead to let them know the situation, and the doctor needs to read it carefully, since HIPPA wouldn't allow discussing my dad without him present.

The one thing in my favor is that I have always been "Daddy's little girl", even now at nearly 60. Sometimes, my DSM can get him to do things when she tells him that I suggested it.

My DSM is my age and we are like best friends now. She just seems to be overwhelmed and unable to handle thinking, let alone talking, about it much. Since my dad seems ok to be home alone still, she wants to wait to do anything.

I have one brother that I grew up with, and one brother that my dad adopted after he married my DSM (her son). Her son lives out of state, and my brother is dealing with his wife who has had several strokes last year. I have 2 adult kids, but one is also out of state, and the other is kind of a mess medically. My DH and I are all she has to count on.

My DH and I have been visiting every week for years. We live in the same town. Lately we have noticed his decline increasing in speed. I pointed that out to DSM to help her see. I think she can't see it as much, being with him every day and it being more gradual to her. This is so difficult and painful for her, that she seems to be in denial of how bad it is getting. My heart is breaking for her and for my dad!

What is CELA?

I know that we need to get the POA done. I can't force her to do it, so any suggestions on how to gently convince her would be appreciated!

SusanB-dil

CELA - Certified Elder Law Attorney. They are more specific and knowledgeable to the needs of older folks.

None of 'this' is easy. Good he has some good people watching out for him. You could point out things to DSM, but sometimes someone close doesn't want to see the changes, because yeah, it is heartbreaking.

gb2847

I think that my dad and DSM did an Advanced Health Directive shortly after they got married. I will ask and help her get an updated one, with me on there as a back-up person.

Since she is the spouse, does she need any other legal powers? I will tell her that she needs to make sure that her name is on EVERYTHING (not just his). Would that be enough for financial matters?

Thanks again for all the help and support!

harshedbuzz

No. She probably needs a POA. If she doesn't get one signed asap, she may be forced to go through the courts for guardianship which is much more expensive and time consuming in addition to requiring your dad to be evaluated independently and the judge to deem him incompetent-- maybe something you'd want to spare him.

If he has retirement accounts like an IRA or SEP-IRA, she cannot be on them. If she wanted to put the house in her name only because of Medicaid rules, she would need to be able to sign for him. To sell my parents' homes, I needed to be able to sign for both as they were joint tenants in common. They co-owned some of their vehicles.

If she predeceased him, it would be convenient for you to automatically be able to step in rather than obtain guardianship to manage his stuff.

HB

jfkoc

You need to have a diagnosis and there is a protocol to follow. There is a lot of good info on this online.

Please keep in mind that a direct approach is rarely the best. You will need to be creative and think outside the box to make things happen.

jfkoc

harshedbuzz

@gb2847 said: " now they do some sort of imaging to see plaques or some sort of growths on the brain that is unique to Alzheimer's. I don't know if the correct imaging was done."

Are you talking about an amyloid PT scan? I'm not sure these are readily available because of insurance coverage and I would expect this kind of order to come from a neurologist not a PCP. Sometimes spinal taps are used, as well.

If he's only seen a PCP, then the treatable stuff was probably ruled out with bloodwork and perhaps a tumor with imagining.