The easy – and probably unhelpful – answer is: “Sure, it’s possible.” – said, of course, with suitable emphasis on the final word!

After all, anything is supposed to be possible. Right?

But what we’re really asking is: Can I manage it? Will it work in my situation?

And the frustrating reality is, I don’t know.

What I can do is speak from my own experience and research.

But after it’s all said and done, you’ll have to look at this picture, talk it over with family and trusted advisers, and decide whether it would be feasible and realistic for you.

Perhaps the least useless thing I can do is to try to paint a picture of what solo caretaking might look like in the hope that it will give you a framework for your own decision making.

So, strap in, and we’ll start to think through the question: Can you be a caretaker all by yourself?

Preface

I’ll be speaking broadly. I’ll talk about a way solo caretaking could look, drawn from when I was the at-home caregiver for my dad, who died from Alzheimer’s Disease in 2016. I started caring for him in 2008. But we’ll also talk about caregiving variations, based on my research. 

The main thing I want to do is to provide you with a blueprint for having a conversation. You will want to talk about possible caregiving scenarios – and pitfalls – with family, friends, and trusted advisers. So, my hope and expectation is that you’ll take what you find useful and leave the rest. 

As an “assist,” I’ve prepared a step-by-step guide that you can feel free to download. It’s possible that you can simply Google “Alzheimer’s Proof Caretaker’s Guide.” 

But, search engines can be a bit dicey sometimes. So, you can always just point your web browser to AlzheimersProof.com and navigate to it that way.

Introduction

This video was prompted by a viewer-submitted question. As I reflected on the viewer’s situation, one thing I realized is that it is extraordinarily difficult – bordering on being practically impossible – to be entirely solo as a caretaker. 

As we move along, it’ll become apparent why I say this. But, what I sincerely hope is that you may also discover, upon reflection, that you’re not actually all by yourself. Or, at least, if you are genuinely alone, then I hope you may come to a deeper understanding of the challenges that lay ahead of you. Not to compound your worries! But simply to enable you to better plan for, and adapt to, circumstances as they arise.

Caretaking Rôle vs. Household Composition

First thing’s first. We should try to clarify what we’re talking about. You’d think that “solo caregiver” is fairly self-explanatory. But I think there are subtleties that need to be made explicit.

What does it mean to be “solo”? There are at least two senses. 

‘Solo’ in a Caretaking Sense

Firstly, there’s a caretaking sense. By “caretaking,” I mean assisting your loved one with the Activities of Daily Living (ADLs) – which I explain in a dedicated video – or supervising a cognitively impaired individual, or both. 

Just for reference, the basic “ADLs” are: bathing, dressing, eating, maintaining continence, toileting, and transferring (e.g., in and out of bed). 

Under the category of “caretaking,” we can further distinguish a primary caretaker from a solo caretaker. Taking the latter first, if you’re a solo caregiver – in a strong sense – then you are the only game in town (or the only player, as it were). It’s entirely and totally up to you – and absolutely no one else – to implement every aspect of your loved one’s care plan.

If you’re a primary caretaker, by contrast, then you have some people in relieving or supportive roles – even if only minimally. Consider a few examples.

Let’s say you have four siblings. One of your siblings drives mom to the doctor’s office. Another buys and delivers her diet-specific groceries and medicine. A third takes her to church on Sunday and spends the day with her. And a fourth can usually be relied upon to fill in for you if you have something come up.

Even so, mom lives in your house. You administer her medicines, prepare her meals, and otherwise tend to her daily needs. You watch her for the majority of the week. The bulk of caretaking duties fall upon you. We might say that you are mom’s primary caretaker. 

On the other hand, suppose three of your four siblings live out of state. The other one declines or refuses to help you with any facet of mom’s care. Here, you’re more of a solo caretaker.

Granted, there are cases that are harder to classify. More on that in a moment.

But… it’s not as important to classify the cases as it is simply to recognize that there are different levels of expected responsibility falling on you in each case.

Questions

One of the most pressing questions is: Which case is – or would be – closest to your situation?

Can you expect help with the actual caretaking responsibilities?

At this point, I’m thinking about unpaid help: assistance you’d get from family and (possibly) friends. We’ll consider the role of professionals in a few minutes.

If you’re closer to a primary caretaker, then your questions are things like the following.

How dependable are the secondary caregivers?

Do you have someone who can step in for you in an emergency?

When you get sick, for example, is someone willing to come into your place?

Bear in mind that an Alzheimer’s sufferer may have difficulty adjusting to a new environment. Often, they have enough trouble getting around a familiar place. If the place is comparatively strange, they can be especially difficult to manage.

Do you have a family member willing to be around you when you might be contagious?

Will someone take your loved one to their place for a week? 

Remember that the care environment may need to be safeguarded and secured in various ways. I’ve spoken in other videos about many aspects of this. You may need to install childproof locks on cabinets (to prevent your loved one from accessing dangerous chemicals or objects), change thumb-turn locks to double-keyed deadbolts (to reduce the risk of “elopement,” which is the caregiver’s term for when your loved one wanders away from the care environment), install closed-circuit cameras (to monitor them while you do other, necessary work), etc.

Even if you do have a family member who is willing to take dad for a week, it may be necessary for them to prepare their home for this eventuality well in advance. 

And if you have no one, how will you function as a caretaker if you are not feeling 100%? What if you become disabled? Etc.

For that matter, how will you sleep? Many of you may realize that Alzheimer’s, and other forms of cognitive impairment and dementia, often interrupt normal sleeping patterns. Usually, this results in an insomnia-type situation at night. Your loved one may have difficulty falling – and remaining – asleep. Sufferers who wake up in the middle of the night may wander. And, unless their environment is entirely free of potential hazards, this nighttime wandering can’t be ignored. 

Related questions include: How will you cook or otherwise prepare meals? Similar problems with wandering may appear during the day. If you need time in the kitchen, it may be possible to entice your loved one to join you – possibly by assigning them an easily accomplished or harmless task. But if they refuse to cooperate, or if they start to walk away, you’ll need to make sure they’re not getting into anything dangerous. And that can be easier said than done – especially if the timer’s going off and that dish in the oven is about to burn.

Now… some of these problems lead into another topic.

‘Solo’ in a Housekeeping Sense

Remember I said that there were two relevant senses of the word “solo.” The first was the caretaking sense. The second sense is related – and possibly overlapping.

And that’s the general question of whether you’re alone in your household. Apart from your afflicted loved one, are you literally the only other person in the home?

From this standpoint, we’re talking about whether you’re single, married, or otherwise “partnered”; whether you have kids; whether you have a roommate; or even, in some cases, whether there’s another aging adult that you care for already. 

The basic questions, here, are: Are you being helped in running the household? And do you have other people – besides your afflicted loved one – for whom you are responsible?

I want to keep the phrase “running the household” a little vague. After all, this is not a channel about good housekeeping. But, just so we’re on roughly the same page, I have in mind anything – and everything – that goes into making sure the house isn’t condemned and the people inside it don’t starve. Doing chores, paying bills, performing maintenance, and …whatever else.

There are too many household variations to list them all. But we can gesture toward four (4) broad types, under two overarching factors: whether the other people are helping you, or if they’re needing help from you.

Of course, there’s a sense in which any group of people thrown together under the same roof will sometimes help one another and sometimes need help from one another. 

But, for this exercise, what you want to ask yourself is: Are the other people in the household helping you in a consistent and meaningful way? Relatedly, you want to ask: Are the other people in the house needing substantial help from you on a regular basis?

We’re going to assume simple “yes” and “no” answers can be given. Real-life cases may involve “maybe” and “sometimes” answers. But… this uncertainty may help you decide what to do.

After all, if your household is already a “question mark” – before you bring in an Alzheimer’s-afflicted loved one – then you might have serious concerns about the viability of a plan that complicates your living situation further.

Ignoring those complexities for the time being, we can arrange the following possible answers. 

1. One case is where you both give help to – and can expect help from – the people in your house. We might think, here, of two married or “partnered” people, for example.
2. Another is where you provide help, but can’t expect or rely on any in return. An example of this would be a case where you also have young children in the house.
3. A third is where you don’t really need to provide help, but you still get help. Maybe it’s your house, but one of your grown children lives with you. They pay their own way, as it were, but also do the dishes, maintain your car, mow the grass, etc.
4. Finally, we can imagine a case where you don’t need to provide much help, but you don’t get much back either. Perhaps you have teenagers. Maybe they’re in college and working part time. They’re starting to pay for necessities and you don’t have to do much for them day to day. But they’re not around much. And they aren’t really contributing to the household. 

Some of this will dovetail with financial considerations, which I will say something about in a moment. But, for the time being, and at the risk of harping on the obvious, we can expect that it would be much easier to take on caregiving responsibilities in a household where you’re getting help than one where you’re not getting help.

Likewise, it would be harder to be a caretaker for someone with dementia if you’re also having to provide help to other people already (for example, children). 

Still, for all that, it may be possible to add an Alzheimer’s-afflicted loved one into any of the four scenarios. And this is because there are so many factors at play. 

For instance, it would make a huge difference if your afflicted loved one presently is in an early-stage – or has a mild form – of dementia as opposed to something more severe. 

‘Early’ vs ‘Middle’ vs ‘Late’ Stages

I don’t want this to be a video about Alzheimer’s various stages. I’ve gotten into that topic before – and it may be good to do so again in the future.

At the same time, we can’t avoid touching on the subject, here. But my remarks will be cursory and shouldn’t be taken as a detailed accounting of the progression of dementia.

What I want to highlight is that caretaking challenges are not static. They can and do change – sometimes dramatically, frequently, and unpredictably. 

Caveats notwithstanding, we can say that so-called “Early-Stage” Alzheimer’s is characterized by mild difficulties. Memory and reasoning are beginning to be impaired. But this impairment may go unnoticed – even by family and trained physicians. 

Possible “comorbidities” aside, your loved one may be able to maintain a large amount of independence. For example, they might be able to cook for themselves, handle basic finances, maintain good hygiene, etc. They might even still be able to drive. Though, this poses special problems and carries risks, as I discuss elsewhere.

From a caregiving perspective, it may not pose insurmountable or even especially difficult challenges to take in a loved one who is in an early stage of cognitive decline. In other words, caregiving – even solo – could potentially be sustained throughout the early stage of dementia.

That said, there are important qualifications. Firstly, given the subtlety of the symptoms, Alzheimer’s may not be diagnosed in its earliest stage. So, families may not be presented with the question of home care until after the dementia becomes more advanced.

I didn’t come in until my dad – by all accounts – was already in Middle-Stage Alzheimer’s.

Secondly, given the current state of the medicine – and enough time – the disease will (unfortunately) progress. This has numerous consequences. Chief among them, for this discussion is that, even if you are able to be a solo caretaker for a while – while symptoms are mild – you have to understand that symptoms will not be mild forever.

If you have a good reason for suspecting that your loved one’s dementia will not become more complicated, that’s one thing. For example, let’s say that your mom is simultaneously (and tragically) diagnosed both with Early-Stage Alzheimer’s and some form of advanced, inoperable cancer. Suppose that her physicians expect her death within 12 to 24 months and they think it likely that she’d still be suffering from only mild dementia during that interval. In that specific case, you’d have good medical reasons for worrying less about how to handle advanced Alzheimer’s than about how best to deliver so-called “palliative care.” 

Even so, you may feel more comfortable with a backup plan. After all, the exact progression of the cancer and the dementia are, to some extent, left to the educated guesswork of the doctors. And they are not all-knowing or inerrant.

One final word, here. If Alzheimer’s (or some other dementia) is recognized in an early stage, it may provide a prime opportunity to involve the afflicted loved one in the development of a sustainable, long-range plan for their care. If you simply take them in – and figure you’ll deal with any worsening of their condition later – you may foreclose on that possibility. 

Not only this, but if they do live long enough for the dementia to progress, then caregiving will become more complicated. And that is what you can expect by “Middle Stage.” 

It’s arguable that Middle Stage is the most difficult, from the standpoint of caregiving in general, and at-home caregiving in particular. Be that as it may, Middle Stage is characterized by a worsening of the pertinent condition. You’ll be dealing with a person who may still be mobile, but who is no longer reliable in terms of decision-making, memory, reasoning, etc.

To put it bluntly: It can be a bit like dealing with a child who has the physical abilities of an adult. 

Middle Stage is also often the longest stage. Possibly this is due to the fact that Early Stage may not be detected immediately. Bear in mind that the beginning of “Middle Stage” may not be much worse than the end of “Early Stage.” This might point to the clumsiness or inadequacy of the three-stage view. But my point is that the relevant degeneration and transition can be gradual. The home situation could be fine and manageable until… it’s not. 

And – especially if you’re all by yourself – you need to have some awareness of this progression so you can plan accordingly. After all, if it became necessary for you to look into nursing homes, it’s not clear how you would be able to manage visiting and applying to facilities while you’re buried in daily caretaking tasks. And nursing homes almost always have waiting lists.

And while the progression of dementia is somewhat predictable, there are numerous variations. 

For instance, Early Stage is usually said to last 1 to 2 years. Fair enough. But you should know that, occasionally, people report a precipitous decline in their loved-one’s cognitive function. 

This might occur after a major surgery, for example. My dad took a significant turn for the worse following a triple bypass and a colectomy (spaced out by several months). I’ve seen comments where other people have shared similar stories. It may happen that your loved one is compliant or reasonable one day; then – almost suddenly – they’re obstinate or uncontrollable.

If you can make it all the way to “Late Stage,” you might find that a lot of the Middle-Stage difficulties have subsided.  For example, your loved one’s mobility will be drastically diminished. And at a certain point, they will have a near-total impoverishment of their communication ability.

The huge caveat, here, is that Late Stage comes with brand new difficulties. Dealing with a bed- or wheelchair bound person is by no means effortless. They have to be bathed or wiped, changed, fed, hydrated, turned to prevent bed sores. Etc. 

When you imagine having to lift an immobile person and help them transfer, you may see why this stage can be extremely physically demanding. 

And speaking of those challenges, let’s talk about another set of considerations. 

Able-Bodied vs Disabled

Let’s go back to the beginning of the home-care-decision process. Whether the cognitively impaired adult is able-bodied will also matter. Although, this consideration cuts in two directions.

If your loved one has mild-cognitive impairment, then – all other things being equal – it would probably be easier to care for them if they were able-bodied rather than disabled. As stated, many early-stage Alzheimer’s sufferers can perform a lot of daily activities on their own. And while they will need some measure of monitoring and reminding, these kinds of assistance may be “low-impact” and might be manageable by a caretaker who has many other responsibilities.

On the other hand, if your loved one has more severe dementia, then – somewhat paradoxically – it might be easier to care for them (overall) if they were also physically disabled. This sounds bad, but it’s to say that an able-bodied person with significant dementia may be an elopement risk (meaning that they have a tendency to leave the safety of the care environment without the knowledge of the caretaker); or they may otherwise require constant supervision. 

I’ve told many stories – in other videos – of times that my dad created messes or safety hazards (whether for himself, for others, or both) in virtue of the fact that he was still ambulatory and mobile, but had lost his ability to recognize perils or to make good decisions.

That said, a severely impaired person who is also disabled may be at increased risk for other things – such as falling. They might fall out of bed, out of a chair or wheelchair, or – God forbid – down a flight of stairs or off the front porch.

To make all this even more complicated, it’s also predictable that – again, all things being equal – a physically disabled person would be more difficult to care for than one who is able-bodied. This is due to the obvious point that a person who is physically disabled will require help getting around, whether to the bath, shower, or toilet; in and out of chairs or bed; or whatever. 

Support Network

You also need to consider your – or your loved one’s – support network. And, here, let’s further develop the point – made earlier – that some cases are difficult to classify.

For example, let’s say you’re caring for mom or dad in your home, but that you have siblings who live in the same city. Suppose that they don’t usually assume caretaking responsibilities. 

Still, if they could or would assume some responsibilities in the event that you had a personal emergency, you would want to know this – and get that commitment – in advance of needing it. 

Is this a case where you’re a primary caregiving, or solo? Once again, and obviously, it doesn’t really matter what you call it. What matters is what help you can rely upon!

I am working on a separate video on talking and planning with family. The best practice is to have hard conversations before emergencies arise. Try to agree on a workable plan in advance.

See, again, the “Caretaking Guide” at AlzheimersProof.com.

Paid vs Unpaid Support

Family can be – and often is – a valuable resource. However, it has its limitations. 

What happens if your sister is out of town when you fall ill? She promised to help in the case of an emergency, but she’s just not around.

In such cases, you may need to augment your family network by paying for professional services. So, let’s round out our discussion by picking up the thread I laid down earlier.

There are numerous types of paid services. There may be home-care providers in your area. Some of these may require applications and approvals in advance. This is especially likely if your loved one requires skilled-nursing care, or if you will be – wholly or partially – relying on long-term-care insurance, medicaid, or medicare. 

I have a few videos sketching the basics of these. If you would be interested in more, please leave me a comment.

Of course, other options might include changing the care environment altogether. On this wavelength, there are Assisted-Living Facilities and Nursing Homes. 

A somewhat middle-of-the-road option would be an Adult Daycare. This is a facility you might be able to utilize alongside home care. For example, maybe you take your loved one to a nine-to-five daycare program Mondays, Wednesdays, and Fridays, but care for them at home the remainder of the week.

A final recourse (still thinking about maintaining homecare) is called Respite Care. Respite Care is designed to give the primary caregiving a short break. But, if the respite provider comes to the home, this may only be for a day or so. If you take your loved one to a respite facility, the respite interval may be a week at most. 

For some of the differences in care environments, see my dedicated video. Admittedly, it’s an older video. It might be time to remake it. Feel free to share your opinion in the comments.

Nursing Home 

The thrust of this presentation is the feasibility of solo, at-home caregiving. But, what if you determine that it’s simply not feasible? 

We should say, emphatically, that it’s not necessary to look at it as an either-or situation.

What I mean is, you shouldn’t think that either you care for your loved one in the home, or else you’re just not involved at all.

When my family made the decision to get my dad admitted to a nursing home, we saw – up close – the level of involvement that he and other patients received from the families.

And it was definitely a spectrum. On the tragic end were those people who received no visits from loved ones. Whether this was because they had no living relatives or because their relatives were unable or unwilling to come, I can’t say. And it probably depended on the case.

In the middle were those people who received regular visits from family members. Maybe it was the same day every week, or always on weekends, or whatever. But these patients had family members who remained involved in their lives.

On the other extreme, there were family members who – barring emergencies and illnesses – came to the nursing home every single day. These devoted folks – whether children, spouses, or whatever – maintained their role as caretakers, despite the change of care environments.

And here’s the crux. You may not be able to accommodate your loved one in your home (or in their home) all by yourself. But you could potentially still be involved as a caregiver – even daily.

I say “potentially,” because (as always) there are complications. For example, it would be an obstacle to daily visits if you had to make a four-hour drive to get to the nursing home. Obviously, all the income-specific considerations are still pertinent, here.

And there are ancillary factors as well. Unless you trust the staff implicitly, or you’re on site frequently, it’s a good idea to vary the days and times of your visits. I will have to get into more detail in another video.

But, in the same vicinity, nursing homes are often understaffed. What staff there is, may be overworked. This may lead to a situation – usually unspoken – where the staff depend upon you to deliver basic care to your loved one. And, well… there’s no delicate way to say this, but: You pay the same for the nursing home whether you are performing caretaking duties or the staff is. 

It may come down to the question of whether it matters more to you that your loved one is properly cared for, or whether you get what you (or someone) is paying for. 

Financial Considerations

Of course, professional home care, Adult Daycare, Respite Care and the like are not free services. Daycare and homecare can cost several thousands of dollars every month. And if you admit your loved one into a nursing home, the average expected monthly costs start at $4,000. 

You or your loved one might qualify – or be able to qualify – for Medicaid. But you should know that not all nursing homes accept Medicaid. Of those they do accept Medicaid, they may not accept it for every available bed in the facility. That is, Medicaid beds may be in short supply.

So the prospect of having – or electing – to pay for care (of any kind) leads immediately into a discussion of finances. …For which – once again – I have dedicated videos.

But… At the most basic level, the question is: What is your financial situation? Among the prominent “sub” questions, here, would be: What is your source of income?

We’d be at it all day if I tried to list all the possible combinations. So, let’s just make a few obvious, summary remarks. If you have to leave the house to go to a 9-to-5 job, then assuming caretaking responsibilities may not be sustainable for you in the long run. 

Things might be fine as long as your loved one has mild impairment, is in an early stage, or does not require constant physical assistance or supervision.

But what happens when the dementia advances and becomes more severe? What happens if a fall around the house confines them to a wheelchair? Would you be around them enough every day to notice the sometimes-subtle signs of worsening dementia?

Financially speaking: Could you manage to keep your current job and still be a caretaker?

If your income depends on you commuting to a business, then necessary in-home caregiving will have to be provided by someone else when the time for that comes. Either that or you will have to change your job, take an extended “leave,” or utilize some care facility. As mentioned, Adult Daycare could come into play. 

But, what would you do if your loved one is ill and can’t be taken to daycare? Or, what happens if (or when) their dementia advances and they become hard to control or they become ineligible for daycare? Or, what would you do if, as my dad did, your loved one flat refuses to go?

You may be able to cover limited periods of time with paid time off or family medical leave. But at a certain point, your employer may become less understanding. Or corporate policies might demand your termination – regardless of the good will of your immediate supervisor.

If your job is more flexible, or if you work from home, you might have an easier time in some respects. However, even here: How will you ensure that you can devote the necessary time to your job? How will you make sure you have a sufficiently quiet environment in which to work? 

It’s not always as simple as giving your loved one an arts-and-crafts project, or hoping they find something to do for a couple hours. What if they become agitated? Would you notice if they wandered off? Do you have some way of monitoring them? – All questions for “9-to-5’ers.”

Finally, a problem may arise more broadly for anyone thinking of taking an extended leave or quitting their current job to be a caretaker. If you’re not actively employed, you might find that some of your benefits – such as your health insurance – will be canceled or suspended. And if you ever found it necessary to rejoin the workforce or to try to get your previous job back, you might find that the position has been eliminated or filled. You might lose seniority. If you have access to a pension, its calculation might be negatively affected by the “lost” years.

There are cases where income may not be an issue for you. One might be if your partner or spouse is the primary breadwinner. Assuming they’re on board with the decision to take in your loved one, then – the idea is – you’d continue relying on their income. No changes. In theory. 

Of course, you’ll want to consider whether home care would negatively – and predictably – affect your spouse’s ability to earn a living. If your partner works from home but mom or dad’s raucousness keeps your partner from being able to uphold their job obligations, then things could get messy. What if your loved one has chronic insomnia and their nightly wanderings disturb the whole household? Would your spouse find it difficult to get to the office on time?

Even if things started off “okay,” you’ll want to ask: What happens if the home care starts to interfere with the day job? Will you err on the side of continuing care? Or preserving the job?

These are all genuinely difficult questions. 

Other cases of stable income might be ones in which you are able to live off a truly passive income stream – such as guaranteed pensions, royalties, or trust funds.

However, not all “passive income streams” are equal. Some may require periodic tending. Could devote enough time to this maintenance if you were also an at-home caretaker? 

Probably the most common case where you may have quasi-dependable income is if you’re fully (not “partly”) retired, and you have unfettered access to all relevant funds (including distributions from 401ks, IRAs, Roth IRAs, dividends, and Social Security). 

These can have complications of their own. And it’s beyond the scope of this video to tease out every aspect of relevance. But, if you’re not at least 59 ½, then you likely do not have unrestricted access to retirement funds. And if you’re not at least 62, then you wouldn’t be able to collect Social Security – assuming you’ve qualified for SSA retirement benefits. 

Even if you can withdraw money from retirement funds without penalty, you still have to keep an eye on your tax situation. And if distributions from your retirement account depend at all on market performance, then the next economic downturn could upend your ship. 

Eventually, if you’re not already doing so, you’ll be forced to take money out of qualified retirement plan accounts by way of the so-called “Required Minimum Distribution.” 

The point is that even if you think your finances are “taken care of,” it may not be best thought of as a case of “set it and forget it.” 

If you’re living off government assistance, you’ll want to be careful about altering the number of people in the household. Sometimes this can jeopardize your eligibility for some programs.

I can’t and won’t speak to this in any detail, here. Except, I will say that you should consult with experts before finalizing or implementing any changes. And you can see some of my other videos for basic overviews of some relevant programs like Medicaid and Medicare.

It’s worth pointing out that there are a few programs under which you might qualify for government subsidies as a family caretaker. I believe that Medicaid has such a program, sometimes falling under the umbrella of “Consumer Direction.” 

Once again, it’s beyond the present scope to detail such a program.

And, of course, eligibility for government programs isn’t the only concern. The amount of assistance you qualify for may change depending on your household’s total financial picture. In some cases, if you change the makeup of the household, you’ll also change that picture.

Obviously, the amount of income is also important for you to reflect on, regardless of its source.

A question would be: Is your current income level sufficient to pay for home-care services – on top of the other, usual household expenses? If not, then it will probably need to be augmented.

Now you might think that if you’re living – or thinking about living – in the same house as your afflicted loved one, then you would have access to their income as well as your own.

And sometimes this is true. But, there are complexities.

I don’t want to make this a video about the relevant ins and outs. However, I could do so if there’s interest. I’m simply trying to bring to the surface issues that may be of relevance.

In that vein, let me just gesture toward some big considerations. As mentioned a moment ago…

Firstly, if your loved one’s income partly consists of government assistance, and is predicated on their living situation, then changing the situation could change the level of assistance. (Boldface, italicize, and underline the word “could.”)

Secondly, be aware that most financial institutions – for example, banks, brokerages, insurance companies, investment houses, retirement-management firms, etc. – are on the lookout for anything that smacks of elder abuse.

If dad’s social-security check suddenly starts getting deposited into daughter’s account; or if mom’s financial adviser or life-insurance agent gets an out-of-the-blue request to “cash out” this or that account or policy; you will probably have to answer some questions before your request or transaction is executed.

This isn’t to say that you’re trying to do anything questionable! Nor is it to say that these kinds of financial requests can’t be honored. But you should be aware that there are levels of legislative protection that have been built into financial regulations over recent decades. And these result in legal “hoops” that sometimes have to be cleared before you can “pool” resources.

Best-case scenario? You’re able to involve your loved one in making all necessary – or desired – changes before their legal or mental competence is undermined (or even called into question).

This might include cashing out or closing some types of account, filling out beneficiary-designation forms, giving you durable or “springing” powers of attorney, opening joint accounts, transferring control or ownership of a financial holding or instrument, and so on.

Once your loved one loses his or her ability to make sound financial decisions, then many – even most (or all!) – of the necessary financial moves you would need to make wouldn’t be advisable (or realizable) without outside authorization. The chief avenue for this would be a conservatorship hearing in a court of proper jurisdiction.

However, appointment as conservator will almost certainly carry restrictions and require reporting to the court. At a basic level, this means that separate bank accounts will have to be maintained, funds shouldn’t be “comingled,” assets can’t be disposed of without court approval, etc. Additionally, conservatorship generally terminates upon the death of the person who was subject to it – so… your loved one. (The subject would be called a “conservatee” or “ward.”) 

If your loved one is still able – right now – to converse, decide, and think lucidly on these matters, then you could look into trying to arrange the asset picture in advance of any worsening of their condition. For example, if it is their wish that their financial resources be pooled with yours or otherwise used at your discretion then there is not a moment to lose.

Extremely important caveat! If your loved one is no longer legally or mentally competent, then they are unable to consent to changes to their financial situation. You might face serious – even criminal – consequences even if your loved one’s competency is questionable. All this is beyond me. You’d be wise to consult with legal and medical professionals to ensure that everything is above board. Just to be clear: What I’m saying is for general informational purposes only and should not be construed as any kind of advice. 

Suffice it to say… You still do need to be careful with any consolidating moves. 

Another point, here. If it’s even possible (that is, conceivable) that your loved one would eventually need Medicaid to help pay for the cost of care, then you have to take great care when assigning, disposing of, gifting, pooling, retitling, selling, or otherwise transferring assets. Because, once again, there are severe repercussions for not following Medicaid’s requirements to a “T.” It took me three dedicated videos just to scratch the surface of Medicaid-related issues. 

A Word on Emotions

I’ve been ignoring emotional factors because these are sometimes especially difficult to describe or quantify – partly because they are so bound up with who we are as unique individuals. But, they’re no less an important part of our lives. 

You need to consider the emotional impact on – and emotional makeup of – everyone involved. 

On the one hand, this means your loved one’s emotions. A diagnosis of dementia would be depressing to anyone with the wherewithal to understand it. It can also be bound up with or give rise to anger, hostility, and resentment.

Alzheimer’s is a mysterious disease. The effects that it can have on emotions are sometimes as puzzling as they are devastating. There is no formula that I am aware of that will predict exactly what you’ll get.

Before his decline, my dad was friendly, likable, and somewhat extroverted. He was also easygoing and, to a large extent, unflappable.

As his cognitive faculties eroded, he became aggressive, belligerent, and combative – with everyone around him. It’s not exactly clear how to understand what occurred. 

Did the dementia – so to speak – cause his emotions to “invert”? Did it cause an awakening and overemphasis of dormant negativity? Or did it destroy who he was and, in effect, leave us with someone new? 

The other side of the coin, in a solo-caretaking situation, is your emotional tendencies. 

If you are mellow and don’t get your feathers ruffled easily, you might be able to take caretaking challenges in stride. On the other hand, if you’re irritable and impatient – like I can be, for sure – then you’re in for an especially tough time.

These considerations need not be determinative or final. Alzheimer’s is always a wild card. And we’re often capable of rising to a challenge. So don’t sell yourself short. Don’t “ostrich” either. 

For those who are interested, I dive more into emotional factors in the companion video “Is It Hard to Be a Caretaker?”

Summary Remarks

Okay… this has been a long and bumpy road. Let’s try to take stock.

We started by thinking about what it means to be a “solo” caretaker. We distinguished being a primary caregiver, where others – whether family members or professionals – assist you in backup, respite, and various secondary roles; and being truly solo, where you’re literally handling all caretaking duties by yourself. 

But we also noticed that being a solo caretaker doesn’t necessarily mean you’re alone in your home – not counting your afflicted loved one, of course.

It’s difficult to be a caretaker at any level of involvement. It could be a challenge to take dad or grandma for the afternoon, let alone invite them into your house 24/7/365.

If you’re truly going it alone – both as a care provider and as a homemaker – then you’re in for major difficulties. Assuming you have your financial bases covered, however, and you just have to focus on caretaking, I don’t want to say it’s impossible. 

Still, you’ll need to have a plan for necessities like cooking, sleeping, and showering – just for yourself. And you’ll probably want to have some sort of lifeline in place if (for instance) you fall ill or become injured. This highlights the need for a viable short-term back-up plan.

This includes numbers for prospective, in-home professional caregivers, Adult Daycares, etc.

Looking farther into the future, you’ll want to have a plan – even if only provisional – for finding a nursing home should that route become unavoidable. This is part of a long-term backup plan.

If you’re more in the primary-caretaker camp, then some pressure might be off of you. But, even so, emotional, medical, and other factors might arise that make it infeasible (or ill-advised) to continue with in-home care. 

Additionally, worsening of your loved one’s dementia is, for all intents and purposes, inescapable. Though, of course, it’s possible that a comorbidity might arise and further complicate an already complex situation.

Regardless of your circumstances, you’ll almost certainly run into a situation – probably many – where you’ll need or want professional advice. This could be legal, medical, nutritional, psychological, whatever. You’d be well-served by trying to develop a network of connnexions before your need for expert guidance becomes urgent.

Okay. As difficult as it was to make this video, the really hard part is up to you. You have to reflect on these factors and make the decision. Then you have to put that choice into effect.

Please understand that the Alzheimer’s Proof project – both this channel and the associated website – were designed and intended to help you.

I hope you can turn to some of my resources and find some assistance and value in them.

Finally, let me remind you that I have a second video – written in tandem with this one – which you might find a useful supplement. And don’t forget to check out and download the free workbook that I prepared to walk you through reflecting and choosing a path for your family.

If you’d like to ask follow-ups to me, personally, you can type your comments below or email me at AlzheimersProof@gmail.com.

For legal reasons, I cannot give specific advice. But if there are general concerns, I may be able to speak to them in a future presentation.

Please know that I wish you all the best in this confusing and painful process. Thank you for watching.