Advice on learning to cope with parent’s dementia?

Imho, I recommend that you read the book, "The 36-Hour Day."

Now is the time to discuss this with your parents and brothers. Get a clear understanding of what your parents expect from all of you. And set clear expectations about what you are willing to do for them. You are young with a family to look out for and who should be your priority.

I agree that now is the time to start looking for in home help and other services for your parents. Include your parents in making the decisions as much as possible.

https://www.thisamericanlife.org/532/magic-words/act-two

Focus on being a "help" to your dad and not the primary "care giver." Ask him what he wants or needs help with in caring for your mom. My grandmother had mild cognitive impairment for her entire senior years and it never really progressed. She lived to be 98 years old.

Research services that are available in your area. You may never need any/all the services available but knowing what is in your area can be helpful for "down the road". The number one problem that caregivers face is burn out. Developing a group of people to care and support helps prevent that.

Sarah, I wouldn't get ahead of yourself. Your mother is 69. How old is your father? Your guess of his being able to cope for only two or three years seems pessimistic, although that depends on the form of dementia your mother is suspected of having.

MCI isn't usually used to describe the earliest stages of, for example, Alzheimer's Disease or Lewy Body dementias; but it isn't usually used to describe impairment in such young people either - you typically hear it when people in their eighties or nineties are beginning to lose mental capacity. It sounds as if there might be more information to be found and shared before you can come up with an actual plan.

What is your father's relevant family history? More to the point, how is he and what does he say about your mother's diagnosis?

Keep this thought in mind: "when you've met one person with dementia, you've met one person with dementia." You can find out a great deal about services, facilities, techniques, therapies and so on, but nobody can tell you how dementia will impact on your own loved individual family member. You'll get your best information from your parents themselves, by observing how they are and how they're managing day to day.

So rather than dread what may happen, keep your focus on your parents and the strengths, abilities and quality of life they DO have. You're right and sensible to get yourself prepared, but honestly this is not the end of the world :)

Thank you all so so so much for your advice and sharing your own experiences. I am comforted to know so many of you are there to offer your ideas and I will look through all the suggested videos and books to find the best for me. I’m definitely going to look into those online courses! It honestly does trouble me that there is no “one” answer to what will happen. Gives me anxiety not knowing. But I am going to deal with that as well! Thanks again and any more info is greatly appreciated! I’m sure I’ll be looking at these supportive responses many times in the future.
-Sarah

Bumping for more great advice.

The books already mentioned & Teepa Snow's info - yes!

Just adding, if you really want to study this area:

University of Tasmania has online short courses (free). There's Understanding Dementia & Preventing Dementia. I've done both & highly recommend 'Understanding' as it's very accessible, lots of video content & lots of real life stories. The other was good but more stats & info.

https://www.utas.edu.au/wicking/understanding-dementia

Next start date 7 July.

My Mum showed mild cog decline after TIAs then more after a big stroke but has stayed stable. Getting more knowledge has really helped me adapt.

Sarah
You are getting great advise.
I’ll add a couple of thoughts not yet mentioned.
Your dad is a vulnerable individual as an elder caregiver. As many as 40% of caregivers die before the patient. It’s easy to get focused on the one with the diagnosis and allow the spouse to fall under the radar or even to think he has a cognitive issue when he’s actually overly tired. Encourage him to hire domestic help soon. If he is like most elders he will resist. If you are like most daughters, you will just pitch in and think you and dad can handle it.
Early introduction allows your mom to become accustomed to having help. Extra help will assist in keeping your dad from exhausting himself and is an extra pair of eyes for you. In the beginning it might be a housekeeper that comes when you can be there. You can introduce her as your helper. Or you might want someone to come in to offer personal care. My aunt, 93 and with dementia for about 10 years is lucky to have a morning aide who does both.
I would also encourage you to not count your brothers out. You will need them, especially for emotional support. A son can often encourage a mom in ways a daughter can’t. Your dad could also really appreciate rides and outings with his sons. Call on them instead of your husband for the “manly” chores. My siblings and I really bonded over caring for our mom and dad and worked as a team. There was strength in being united when trying to get mom to accept and go along with hard decisions. And my parents didn’t have dementia.
Consider a therapist for yourself. This is a marathon regardless of who does hands on caretaking or who develops dementia. You must pace yourself and learn to manage their care and not feel compelled to do hands on. Keep your family first. I have a cousin who became so consumed with the care of her parents, she was practically a stranger at her only child’s wedding. If I hadn’t gone to sit with her parents, she would have missed her daughters college graduation. Don’t let yourself get that isolated in their care. It begins one request at a time.
Do learn all you can about your states Medicaid laws because you want to make correct decisions that don’t disqualify them should they need Medicaid. Your mom is very young and could live many years past her ability to self pay. See a certified elder attorney as soon as possible.
You are very wise to get the lay of the land early. Most of what you do and will learn is good info regardless of diagnosis.
Wishing you all the best on this journey.

I think the responses you have received are excellent. If the cognitive decline is new, I’d make sure they have signed DPOA, HCPOA, etc.

You can prepare yourself, but, it’s still a surprise when it happens that your LO doesn’t know who you are. I didn’t know anything about dementia at first, but two of the best things for me was reading what others were experiencing and reading professional material about the condition. Knowing what is happening and what your options are for care, are also very empowering.

So many current or future caregivers never do educate themselves about the various causes of dementia symptoms. I applaud you for wanting to learn in advance. Although there are "stages" of dementia, no two people go through the experience the same. By learning about dementia and its causes, you'll have some idea of what the future holds for both you and your mom. There are no training manuals for a caregiver of someone with dementia symptoms, it's all OJT.

I've read many books, been to many websites, and viewed many Teepa Snow videos. The two books I recommend are "The 36 Hour Day" and "Learning to Speak Alzheimer's". After them there are many more books on the subject. Teepa Snow is an occupational therapist whose specialty is dementia. She has over 100 videos. You can find her on You Tube.

Know, however, that MCI is not early dementia but may be a precursor to it. If it does develop into dementia (not all MCIs do), you will need to find its cause. Dementia itself is not a disease, but is caused by some underlying issue, most commonly Alzheimer's dementia. Knowing its cause will allow you to better manage her condition in the future and make her life fulfilling.

As a future caregiver, find a dementia support group in the Glendale area to attend. You will meet with other caregivers to share stories, experiences and come to realize you are not alone in this endeavor. The Alzheimer's Assn and your local Area Agency on Aging will be good resources.

So educate yourself and keep a positive attitude. Your mom and dad are very fortunate to have you looking out for their future.

Hi Sarah,

BarbBroolyn gave you really good advice. If it wasn't for this site I would have never learned about the Teepa Snow youtube video's which really helped me.

My 94 year old Mom has had dementia for at least 10 years (I honestly do not know what stage) and she knows me (my name) and my cat's name. We play cards every day and she is a card shark who wins most of the time!

Please don't fall into the trap that all people who have dementia are the same for they are not. Our loved ones are still individuals and dementia effects everyone differently. They do not fall into one mold.

Try to be positive, yes, easier said then done, yet realistic. Our loved ones (whether they have dementia or not) pick up on our moods and state of mind.

I care for my Mom 24/7 and she picks up on my moods thus if I'm anxious or upset she gets upset and/or confused until I explain to her what's going on within myself and even ask her for advice (which makes her feel good).

Also, my Mom to this day complains about losing her independence so I let her wash some dishes (even though I need to re-wash them when she can't see me) because it makes her feel good about herself.

One day at a time.

Wishing you and your parents the best,
Jenna

SarahR, Good insights and suggestions from BarbBrooklyn. I just want to weigh in on the "family history of dementia" thought. Just because some people in your dad's family developed dementia does NOT mean your dad is guaranteed to get it. I have a vivid example in my family. My mother is youngest of 8 children (91 yrs old). All of her siblings lived well into their 90's and with amazing health. I was raised with my mom and her 2 older sisters (3 years apart). These sisters never married, nor had children. They worked at the same company for the majority of their lives, doing slightly different jobs and retired within 2 years of each other. They retired to FL and still live together in the same home. They did and still do everything together, same vacations, friends, food, health, hobbies. One of the sisters developed dementia in her late 80's. She is now 98 yrs old and still knows who I am even though she has late stage dementia and only sees me twice a year. Her older sister is 101 and reads the WSJ every day and can recite current pro sports stats like nobody's business. My point is you must inherit the gene for dementia. Simply being related to someone is no guarantee. I sincerely wish you many more wonderful years with your parents. May you have peace in your heart about it.

Start with Atul Gawande's On Being Mortal; this is a book about general end of life issues, including dementia; some of the conversations that he recommends having you should be having now, before your mom's dementia becomes worse.

I have seen The 36 Hour Day highly recommended, although I've never read it.

You need to check out Teepa Snow, an amazing Occupational Therapist who has multiple videos on YouTube about dealing with folks with dementia.

Information from Alzheimer's organizations is generally very good.

My mother was diagnosed with MCI and we were told specificially that it was NOT early dementia; that MCI sometimes progresses and sometimes does not. Make sure that you are very clear about what the doctor told you (or told your parents if you weren't there).

I found that even before my mother's diagnosis that what the doctor SAID and what my mother THOUGHT he said were two very different things.

I found that my mother got superior care from a doctor who specialized in the elderly (Geriatrician) than from the Internist who had known her for years.

We also found that adding a geriatric psychiatrist to the team was an enormous "added value".

Roz Chast's "Can't We Talk About Something More Pleasant" will make you laugh and cry at the same time.

Make sure that you have POA for health and finances in place.

And finally, my mother knew who we all were until the day she died. Not all dementias are the same. There is an expression "If you know one person with dementia, you know ONE PERSON with dementia".

I'm sure others will be along with more and better advice. ((((hugs))))))