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Beginning Alzheimer's


athomeontheprairie
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I've suspected that my mom is starting to develop Alzheimer's over the past year. It's the little things.

 

Yesterday, she forgot who I was. Didn't know my name or that I was her daughter. I see her twice a week and talk to her nearly everyday.

Well, apparently that coupled with several other forgotten (major) things this week prompted her to call the doctor. She goes in in a couple weeks.

I am so glad she is going to see the doctor. What can they do? How do they help? How can I help her?

 

But I'm scared. I'm scared for her. I'm scared for me (I don't want to "lose" my mom".

 

Need some btdt advice. How do I help her?

 

She isn't alone, my dad is still here, and in good mental health. Dh and I live close and stop in regularly.

I'm so sad and in need of a hug.

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((hugs))  memory issues are so emotional

 

For what it is worth, my father was having horrible memory problems a year ago.  A trip to the doctor revealed that he was allergic to a medication and severely sleep deprived.  They were able to tweak some things and there has been a marked improvement.  He has lost almost 100 pounds (a needed improvement) is active, happy, and alert.  Praying that your mom's appointment is able to pinpoint some changes that can help her in a similar way.  

 

 

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:grouphug:

 

Check her medications for whether they cause memory issues and not just by looking at the information from the manufacturer.  Google them to see if people talk about memory loss as being a problem.  For example, each time my father has taken a statin, he has had memory loss that completely reversed when he went off it, but his doctor kept telling him he was nuts.  But if you google "statins and memory loss" you'll find that lots of people have the same problem.  Also combinations of meds can be a problem. 

 

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((((((((((((((((((((((((hugs)))))))))))))))))))))))

 

My best friend has it. If it turns out that your mother does too, my btdt advice is start here:

 

https://stilllifewithdementia.wordpress.com/2016/01/04/blessings-of-dementia/

 

Then, when you're ready, check out the resources listed here:

 

https://stilllifewithdementia.wordpress.com/2015/10/10/suggested-reading/

 

and beware of alz.org.

 

If you are going to be her primary caregiver, of course you need to network with other caregivers, but please, please, please also listen to the people who are living with this disability, especially Kate Swaffer and Christine Bryden.

 

HTH

Edited by Guest
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:grouphug:

 

Make sure you go with her to the doctor and make sure the doctor rules out other issues. Also, it's not a bad idea to contact the doctor first and send a fax of what you've observed. Too many docs ask the patient to describe their memory issues. Duh. They forget them. Family is much more accurate. 

 

There are several meds, including OTC ones that can cause cognitive issues. http://www.americangeriatrics.org/files/documents/beers/2012AGSBeersCriteriaCitations.pdf  Scroll down and look at the drugs listed as counterindicated because of cognitive issues/dementia, then also scroll down to Table 9. Do NOT assume a family doctor or internist will know this info. It's from the American Geriatric Association and they keep bemoaning how the info does not get well disseminated. It also isn't on the inserts from the drug companies. (It's really outrageous.) 

 

Ask for a FULL thyroid panel: TSH is not enough. Ask for antibodies, free T3 and Free T4. 

 

Ask for B12 to be tested. It should be near 400-500. The bottom of the normal range is not enough. 

 

Those are the main mimics of cognitive decline and they are treatable. 

 

She should also get an MRI to see if she's had any mini-strokes or if there is a tumor. 

 

The family doctor will do a cognitive screening test then if she fails, and from what you reported she will, you should get a referral to a neurologist. 

 

There is little medicine can do for Alzheimers. The drugs they have slow it down some, but they don't improve it. What does help, however, is vigorous exercise. It actually improves cognitive functioning. No drugs can do that. https://www.alz.org/aaic/releases_2015/Thurs1130amET.asp

 

The Mediterranean diet may be helpful. It's possible that your mom will suddenly get real interested in sugar, but if you can keep that down, it will help. The Mediterranean diet supplemented with nuts, 4 T. of olive oil per day, blueberries at least twice a week, and leafy greens every day is optimal. 

 

Keep her socially engaged. 

 

Keep her mind engaged but not at levels that are frustrating. 

 

Immediately, secure her finances. Financial judgment is one of the first things to go. Hopefully your dad would know about this, but people with cognitive decline lose their filters both for scams and for what is reasonable financially. (For instance, she may have regularly given $100 a couple times a year to a charity she likes. Suddenly, there could be a check for $10,000.)  Make sure there is solid health care power of attorney and power of attorney. It's best if your dad isn't the sole one, because he could become incapacitated, too. One of the kids should share poa with him. 

 

Driving needs to be assessed. 

 

Since your mother has already not recognized you, if your parents have guns, get them out of the house. An adult son was shot by a parent in a town nearby because the parent didn't recognize him at the door. Also, poisonous substances in the house should be secured, any kind of power tools, etc. Any meds she takes should be doled out by your dad and otherwise be kept out of access. She can forget that she's taken them and double dose herself. 

 

There is a social group for caregivers that has some links posted. 

 

If your parents have not already made plans for what they would do if one of them needed assisted living/memory care, do it now, while your mom can still participate. You don't have to move her into one now, but getting her name on a list now can be very important.Some relatives my age  had to suddenly find care for their mother when her dh became ill and couldn't care for her anymore. She ended up in a place 1 hour from the nearest daughter because that is the place that had room. 

 

 

Edited by Laurie4b
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(((Hugs)))

 

My father just passed away from Alzheimer's. He was in a nursing home with my mother until she passed in July. He severely declined after her passing and he recently died in November.

 

Besides the good advice given up thread, I would recommend getting your parent's papers and financial house in order. Contact an attorney that deals with elder issues and make sure you are at every meeting! (SIL's father was scammed) You (and they) should try to protect their assets in case they need care.

 

Good luck.

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Forgetting her daughter isn't beginning. That's advanced/severe. I'm sorry. This is serious.

 

My guess is that she might be having small strokes that could have triggered the sudden major shift in mental status. This is fairly common in various dementias. 

 

BTDT, buried Mom in June. (Alzheimer's, plus strokes.)

 

I'm so sorry for what is happening. It is a tragic illness. 

 

BTDT advice, to start with, denial isn't actually that bad a thing, so long as you have enough support/help in place to keep her safe. Mom was in denial. She wanted to keep it secret. I thought that if she shared her diagnosis with friends/church/etc, they would rally around and be understanding. Instead, they ran for the fucking hills. My advice, having BTDT, is to only share the DX with closest dozen friends and family. Everyone else, keep in the dark as long as possible. Once they know, those on the outer circles will disappear, without exception, despite what you think about people/church/etc. Truly. Trust me. It's universal. People are weak and selfish. Only the closest loved ones will walk this walk with your parents.

 

A full DR work up makes sense to rule out other things that could be causing dementia. Some things are treatable.

 

First thing (within the month!) review all her legal paperwork with her, your dad, and their estate attorney (if they don't have one, get one now). Make sure her POAs (durable POA as well as medical proxy/health care agent and living will) are all set as well as the typical will stuff. Talk to your dad about YOU (or another younger generation person) being her (and his) medical POA, etc. Once she gets too far along to legally sign things, then if he is her only POA, and he gets ill or dies first (happens ALL THE TIME), then she is shit out of luck and you will have many more difficulties and expenses managing her affairs.

 

Next up, get control of their finances if your dad is not fully competent. If he is, make sure he takes all financial things away from your mom that could cause trouble. I.e, make sure she has maybe one or two credit cards with very low limits that only she uses and that you monitor daily. Likewise, checkbook, if she must keep one, make sure it doesn't link to their major accounts/assets. Assume that she will make major errors and be vulnerable to scams/"charities"/etc. Truly. Do this ahead of time. I'd bet you $100 that if you reviewed her accounts/mail/etc for the past 6 months, you'll find major problems (unless you or your dad are already in control.) Really, people can get in very bad trouble.

 

Last advice, be ready to wear the big girl panties. It's your time to take care of them now . . . It is really, really hard and depressing. 

 

Post script advice: YOU MATTER. You can make a world of difference to your parents now. Your mom and dad can have some beautiful times. ALZ/dementia is scary, but it is NOT always as terrible as it is made out to be. My mom never was aggressive or dangerous or violent, never, not to the end. I am so thankful we took good care of her and respected her humanity through her last day. 

 

Don't look away. Don't turn aside. You can make a difference. This is a calling.

 

(((hugs)))

 

Feel free to PM me if you want any other specific advice/etc. Much ((hugs)) to you. I know you are grieving now, and the grief will last until months/years after she passes. There are good times left, but a lot of pain, too. I'm sorry.

 

 

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Thank you everyone.

 

Question regarding mini strokes. Several of you mentioned these. I've seen them. I've called the doctor. I've gone in. She's gone in. Tests show NOTHING. yet... Blurred/double vision, can't smile on both sides, slurred speech, can't walk straight. unfortunately the times we've seen and have been late late at night. And the symptoms are completely gone by the time we get to the hospital (min 15 away)and she has no memory of them. They ran tests and NOTHING.

 

What to do?

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Thank you everyone.

 

Question regarding mini strokes. Several of you mentioned these. I've seen them. I've called the doctor. I've gone in. She's gone in. Tests show NOTHING. yet... Blurred/double vision, can't smile on both sides, slurred speech, can't walk straight. unfortunately the times we've seen and have been late late at night. And the symptoms are completely gone by the time we get to the hospital (min 15 away)and she has no memory of them. They ran tests and NOTHING.

 

What to do?

 

Has she been evaluated by a neurologist? If so and nothing, find one associated with a university hospital and try again. 

Did they do brain imaging? 

My loved one is not having mini-strokes, but since they are a form of stroke, I think the same things can help that help reduce the risk of any stroke. (You could also get her to a cardiologist). Mediterranean diet, doctor-prescribed exercise, quit smoking, get enough sleep, reduce stress.... all that good stuff. But I have not BTDT with respect to mini-strokes. 

 

You might try videotaping if you see one again. 

Edited by Laurie4b
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Besides the good advice given up thread, I would recommend getting your parent's papers and financial house in order. Contact an attorney that deals with elder issues and make sure you are at every meeting! (SIL's father was scammed) You (and they) should try to protect their assets in case they need care.

 

:iagree: With this & other posts above. Great advice. I lost my dad to Alzheimers-related complications over three years ago.

 

My dad got all his utility bills on autopay before he got bad. Also, when he was still with it on most days, I helped him set up durable power of attorney, health care power of attorney, and wish we would have gone over funeral stuff at the same time. It was depressing & I had to send my mom out of the room because she just couldn't handle it, but she was so grateful that we'd done all those things as he worsened.

 

Taking away his driving was tough. Putting locks on some pretty strange doors was another tough one. My mom would find him in strange places in the middle of the night. He wandered from the house a couple times, so we got him a special medic alert bracelet for memory-issue people. 

 

Lots of hugs, whatever the medical issue.  :grouphug:

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Document everything as best as you can - symptoms, when they start/stop, with pictures if you can get them, when she's taken meds, etc.

 

Check medications to make sure she's not taking too much or too often. My FIL, who has dementia as a result of a stroke, used to forget that he had already taken his meds, then would take them again.

 

Go to every doctor appointment you can and have written questions before you go. Write down instructions.

 

I agree with others about getting legal paperwork in place immediately. If your mom does not already have durable POA and medical POA set up, its much more difficult to get that set up later if she is no longer able to sign for herself. A good eldercare attorney is worth their weight in gold.

 

Start a discussion now with your dad about what to do if/when she is no longer safe in her home or if he and/or you are no longer able to care for her in her home. It's so much easier to make that transition if you have a general plan instead of being in crisis mode.

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Thank you everyone.

 

Question regarding mini strokes. Several of you mentioned these. I've seen them. I've called the doctor. I've gone in. She's gone in. Tests show NOTHING. yet... Blurred/double vision, can't smile on both sides, slurred speech, can't walk straight. unfortunately the times we've seen and have been late late at night. And the symptoms are completely gone by the time we get to the hospital (min 15 away)and she has no memory of them. They ran tests and NOTHING.

 

What to do?

 

Strangely enough, the same thing happened with my mom. She'd had the full workups, imaging, etc early on in her disease. It wasn't until this past March that her first stroke was actually diagnosed. That one didn't even have obvious signs (I thought she was having a "bad week" or possibly had a UTI), but once the imaging was done, she'd had a huge stroke. She recovered fine from that one, the 24 hr in the hospital was harder on her than the stroke . . . but the second one, in June, killed her. It was massive. Honestly, there wouldn't have been anything we could have done differently, as she didn't have stroke risk factors (no high bp, etc). The kind of strokes she had were "amyloid angiopathy" which is common with ALZ, but I had no idea about it (despite my massive ALZ research, books, etc.) until she had one. There wasn't much to be done about it (actually nothing), but that's what ultimately killed her. 

 

If she had full workups (MRI in addition to CT scan), and they haven't found evidence of strokes, well, I don't know what to say other than essentially the same thing happened with my mom, and they never saw evidence of strokes until the massive one last March. At THAT time, they saw evidence of many other prior smaller strokes, but never in the earlier imaging. I don't know why. She had great care, great drs, etc . . . I don't know. I don't know that it mattered.

 

She should be diagnosable with dementia of some sort by now. Certainly with not recognizing you. Be sure to check for UTI. UTI is common in elderly women, and they OFTEN cause serious mental decline, which can be largely reversed with antibiotics. I think I had Mom checked about ten times in the 18 months she lived with us, and we caught at least three UTIs, none of which had typical UTI symptoms. ALZ is generally a diagnosis of elimination . . . they check for any other causes of dementia, and rule them out, then give a "dementia, probably ALZ" diagnosis. Firm diagnosis isn't possible until after death, with a brain biopsy, which is rarely performed even after death, because once she is dead, who cares?

 

If she has long term care insurance, or similar type planning/insurance policies, investigate them ASAP. My mom had a couple LTC policies, which were very helpful. One had no life time cap, so we were able to start using benefits early in her disease, which was a huge help, since we didn't have to worry about using up benefits. (We never claimed on the second, as it had a 4 year cap, and we were holding that in reserve if she ever needed residential care, which we never did, as we kept her home with us.) 

 

 

Drs often seem reluctant to DX dementia/ALZ. I understand why, having lived with it . . . But, it is important to know what she has so you can make good plans for the next stages. I'm so sorry. 

 

The only good thing about now being an orphan is that I no longer have to fear this damn disease. 

 

But, I also want to reiterate that although ALZ is a death sentence, there is a lot of life to be lived before the end. So many people are so afraid of this disease that they run away. It is a horrible disease, but life can still be good. My mom had 4 years between initial diagnosis and death. She had a good life for those years. Knowing what we faced allowed us to make good plans (not fast enough, but good enough), and also to prioritize spending good time with Mom while she could still enjoy it and while we could still enjoy her. 

 

I kept wanting to scream, "SHE'S NOT DEAD YET!" to those who abandoned her. They lost out. We won. We loved her, we honored her, we took care of her. Like she'd taken care of us. It was SO WORTH IT.

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My mom passed from Lewy Body Dementia (at least now people know what it is, thanks to Robin Williams) in May 2013. I had seen some minor memory issues and odd behavior, but the alarm bells went crazy went she confided to me that she drove 5 minutes to town to run an errand and found herself having no idea how to get home. She snapped out of it and made it home, but that was the beginning of our journey.

 

I don't have much to add to the excellent advice above. If this ends up being a memory disease, I'm glad you're close. My family had moved back to my home town to run our family business in 2007. Little did I know, I'd only have a few short years with a healthy mom, but I'm so glad I was here to help my dad. I had to leave more than one cart full of groceries because a cell phone call alerted me to a crisis at their house.

 

I hope you get answers soon  :grouphug:  :grouphug:  :grouphug: .

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I'm so sorry. But on the off chance, has she been tested for a UTI?  I called my mother when she was on vacation. She didn't know who I was. I thought she might have been in an accident/fallen down/hit her head. It was horrible. I didn't think Alz, because she was fine when she left. I had no idea a UTI could affect someone in this way. It was very scary. 

 

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I'm so sorry. But on the off chance, has she been tested for a UTI?  I called my mother when she was on vacation. She didn't know who I was. I thought she might have been in an accident/fallen down/hit her head. It was horrible. I didn't think Alz, because she was fine when she left. I had no idea a UTI could affect someone in this way. It was very scary. 

 

Yes! UTI can do exactly this. It was always the first thing I had checked for when Mom had a bad episode. . .

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  • 3 weeks later...

 

Why? 

 

 

My bff addresses the problems with the organization here:

 

https://stilllifewithdementia.wordpress.com/2016/02/06/the-alzheimers-association-usa-does-no-help-people-with-alzheimers-or-dementia/

 

Her other post today talks about how meds can help people with Alzheimer's but I also think that her use of language might be helpful to athomeontheprairie's understanding of what her mother may be going through.

 

My friend has progressed to the 6th stage of dementia. Her expressive aphasia (difficulty using language) has become quite noticeable, but the intelligent and resourceful woman I know is still in there and perfectly capable of explaining the science of how Aricept and Namenda work.

 

You don't need to update us if you're not up for it, athomeontheprairie, but I am thinking about you and your mom today and hoping that you are at peace and enjoying the time you have together, whatever her diagnosis turned out to be and whatever treatment options she has chosen.

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Thank you everyone.

 

Question regarding mini strokes. Several of you mentioned these. I've seen them. I've called the doctor. I've gone in. She's gone in. Tests show NOTHING. yet... Blurred/double vision, can't smile on both sides, slurred speech, can't walk straight. unfortunately the times we've seen and have been late late at night. And the symptoms are completely gone by the time we get to the hospital (min 15 away)and she has no memory of them. They ran tests and NOTHING.

 

What to do?

 

I'd video tape future episodes. Just video it continuously for several minutes, eliciting the slurred speech, etc.

 

I'm surprised that no evidence is showing up on imaging. It could be the imaging isn't timed as needed or isn't the right imaging. Is she seeing a neurologist or just a GP? If she isn't seeing a neurologist, then that would be one step to take if you want more advanced testing.

 

That said, I don't know that there is anything MORE they can do. Getting hard evidence of a stroke can help open doors to certain services (hospice in my mom's case), but if that's not on the table, I don't know that there is much more they can do. Presumably, if she has/had risk factors for strokes, they'd already be being treated (high blood pressure, etc.) 

 

I'd say go to a good geriatrician and/or neurologist and ask your questions. Make notes, take up lots of time, etc. I'd estimate my mom's neurology appointments lasted at least 30-45 min on average WITH the doctor in the room. I asked lots of questions and pushed for answers. I got them. He ran late. He lived through it. 

 

All that said, it is all too likely that there is not much more/different that can be done. Love your mom. Keep her safe. Take each day as it comes. Protect her now, anticipating decline before it happens. 

 

(((hugs)))

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I am not sure dementia is something that comes on suddenly, rather it progresses over time. 

 

You've received some great insight from the responses thus far. My only addition would be to get a referral to a neurologist. The neurologist can determine what kind of dementia your Mom has, and give you an idea  of which stage she is at in the disease. The neurologist will not tell you outright how far the disease has progressed, you must infer from the visit and educate yourself. 

 

One of the best ways I've found to cope with my parent suffering from dementia is to take the parent-child relationship out of our interactions. I look at my parent as another person, like an older person in the supermarket, that needs someone to talk to and help finding the coffee aisle.  It helps me stay compassionate and focused on my parent's needs. Watch out for the stress on your dad. Is incontinence an issue? Does your dad dress her everyday? Dental health? 

 

 

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I've suspected that my mom is starting to develop Alzheimer's over the past year. It's the little things.

 

Yesterday, she forgot who I was. Didn't know my name or that I was her daughter. I see her twice a week and talk to her nearly everyday.

Well, apparently that coupled with several other forgotten (major) things this week prompted her to call the doctor. She goes in in a couple weeks.

I am so glad she is going to see the doctor. What can they do? How do they help? How can I help her?

 

But I'm scared. I'm scared for her. I'm scared for me (I don't want to "lose" my mom".

 

Need some btdt advice. How do I help her?

 

She isn't alone, my dad is still here, and in good mental health. Dh and I live close and stop in regularly.

I'm so sad and in need of a hug.

I'm sorry.  It could be or be exacerbated by her medications.  I would certainly look into that. 

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