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I especially liked MJ1929's recommendations. It is wise to think about preparing your living arrangements, the structure of your present (forever?) home, ie access to showers, safety handrails, etc. Over 15 years I very slowly prepared my house. I wish I had moved into a one level home, and for you maybe closer to family.
You've got time but as soon as you'd like, join a support group. I highly recommend Insight Memory Care Center. They're located in Fairfax, and Sterling, Virginia. Some caregivers join into our Zoom meetings from CT and Maine. It doesn't matter and it's free.
I joined IMCC late in my husband's journey. I got our paperwork in order and learned about his preferrences for our "just in case" future, but I wish I had taken advantage of Insight's services and programs earlier. They offer counseling and one of the programs is called Sharing. There is a charge for that program but simply read every scrape of info from their website and you'll get an idea of how to prepare. Pick and chose what you want to take advantage of. A lot is free. I only Zoomed into their support group for years until recently. As of Nov '22 my husband who was diagnosed with Alzheimer's is attending Insight's dementa day care.
I thought I should rather save up for the big expense of a full service full time live-in memory care facility for him but, you want to talk about not being able to take it any more, I was loosing my mind and found that other caregivers have takien this less expensive route as long as possible. It is a life saver.
There are two different levels of Zoom support groups that meet on different days bi-monthly. One for newbies and one for those who have been at it for 2, 4, 8, 15, and even 20 years. Newbies are welcome to join those who are old hands at it. One newbie didn't like the old-hands group because she was still in that "Did you try coconut oil, done that, did you try distilled water, done that, did you try puzzles, did you try Keto, did you try vegan, did your loved one take part in a 4 year clinical trial, done that, done that, and done that, mode. We sympathize but we're over that. Still, being with those who are like yourself is comforting. After 15 years I still distill water, but nothing helps. It's busy work. You're trying to poke a hole in water is all. Can't blame anyone for trying. What are we supposed to do, just watch the house as it burns down?
My lovely group is a family. No one except another caregiver will know To The Bone what you are going through. Find a good one & you'll feel hugged.
Hopefully a remedy may be discovered. At times you will get swells of hope from the periodic news flashes hinting about a new breakthrough that slows down the decline, but the older-hands will interpret such news as words of cruelty.
Hooray, my husband at present finger paints with sh*t, and calls shoes "the apple handle uff hap ding ding", and I'm supposed to take solace to hear that scientists have developed yet another med that will keep him in his present state longer rather than to let nature take it's course to stop his humiliation and horrible existence and let him pass.
You're job is to secure his comfort and safety. Get all the paperwork done. Document if he wants to be cremated or what. This is not terrible. You too should have this in order. My husband and I are both giving our bodies to science. In another 10 years I may change my mind. I can do that.
Make sure you have POA and the rest. I am trustee. I have two successor trustees. I am a sole caregiver and I have a serious responsibility and I can't get weepy about it.
When my sweet beloved husband passes, Should he pass before me, I'm going to shout my lungs out "You big (todate 16 year) pain in the a*s". Then I'll break down brokenhearted because I will finally for the first time in almost two decades remember the gorgeous lovely man, with the terrific laugh, he was.
His disease took over every second of half my married life
Dementia does not come into our bodies. Its a Neurological thing and each Dementia is different in its own way. I don't think Dementias are hereditary. ALZ seems to be. ALZ falls under the Dementia umbrella but it effects the brain differently. Yes, lifestyle has a lot to do with Dementia as do diseases that effect the body and Neurological systems. Parkinsons is neurological so Dementia can set in. Diabetes effects organs of the body. My grandson had his brain operated on for epilepsy and has been told that Dementia could be in his future because his brain has been worked on. Same with my nephew, he has a neurological disorder. My Mom was not a drinker or a smoker. She was showing signs but a head injury escalated her Dementia. Once it starts, there is no curing it or stopping it.
Does your husband take cholesterol medication? It has been proven that Statins contribute to Dementia. The brain needs Cholesterol to function. The Statin does not just target the body it effects the brain too. I had a doctor tell me to never take them. When my new Dr wanted to prescribed them I said no. And she has said nothing since.
I agree that I am hyper-aware because of the moms. I'm not wasting my life waiting for bad news. I am trying to be pro-active so I can know that I am taking preventative steps to improve our overall health and brain health. Not just sitting around waiting for things to get worse. Nope! I'm a take action kind of gal!
Good for you for getting your new house set up so you can more easily stay there as you age. Smart!
Don't waste your life waiting for the bad news. Iknow I'm not acutely aware of now being in the oldest generation in my family and starting to dread what may come next and when. I've tried to channel it more constructively by working it into the remodel we're doing on a house we bought, so the bathrooms will all be ADA compliant with a roll-in shower for the master bathroom, wide doorways, blocking in the studs for future grab bars, and the like. I'm only 61 with no health issues whatsoever, but I'd like to re able to stay in my house as long as possible, and this is how I'm proactively dealing with future issues without stressing about them.
I know this sounds simplistic, but I think you need to find something to occupy your mind so you don't let these fears take over.
Ok, what are we doing to help keep our minds sharp? Watching game shows on TV, such as Price is Right.... Master Mind.... Chain Reaction.... anything on the game show channel that sparks our interest where we need to give an answer. It's a feel good moment when we get the answers right :)
Also, keep on working at a job for as long as you can. Don't retire in your early 60's, unless you have something that can fill your day. I worked until I was 74 and would still be working if covid didn't force its hand. Hubby is 76 and working part-time to keep busy.
Genealogy is good. Loved Ancestry.com which can keep your mind very active, also searching for newspaper articles via different newspaper websites. Found a couple of outlaws in one family tree !!
I have been home with kids and grandkids for decades and know how to keep busy! You are right that having nothing to do would be a bad thing.
Outlaws??!! LOL
huggg. i hope your husband isn't getting dementia.
--regarding diagnosis:
in the beginning no doctor will diagnose it (not necessarily because they miss the signs), but also in order to protect the patient. once you have a formal diagnosis of dementia, it can lead to the start of losing some of your rights, and also the increased danger of financial abuse by family and non-family, and other ways to be taken advantage of. in order to reduce the potentially bad legal ramifications for the patient, doctors won't diagnose dementia, until it's really so obviously dementia that it can't be denied. again, this hesitation to diagnose dementia right away, protects the patient.
--regarding your fears that he might be getting dementia:
you know your husband best. and unfortunately, often we do see the early signs of dementia and we do turn out to be right.
--regarding how to prevent dementia:
as far as i know, there really is no way to prevent it. yes exercise/eat well/keep intellect active, all that helps. BUT one can still get dementia. i know several people who did everything right, super healthy, and still they got dementia.
1 thing that is important, is HEARING. if one starts losing one's hearing, it is VERY likely one might get dementia. hearing aids help slow down dementia.
even if one does get dementia, keeping the brain active also helps slow down dementia. nice conversations, intellectual conversations.
--regarding what to do?
since there really isn't much one can do against getting dementia, let's all try to enjoy/appreciate each day of life we have. ❤️
huggggg.
With this part:
--regarding diagnosis:
in the beginning no doctor will diagnose it (not necessarily because they miss the signs), but also in order to protect the patient. once you have a formal diagnosis of dementia, it can lead to the start of losing some of your rights, and also the increased danger of financial abuse by family and non-family, and other ways to be taken advantage of. in order to reduce the potentially bad legal ramifications for the patient, doctors won't diagnose dementia, until it's really so obviously dementia that it can't be denied. again, this hesitation to diagnose dementia right away, protects the patient.
If the doctors are not diagnosing you or your husband, do the lifestyle changes that is recommended "as if" you do have the diagnosis.
We would all love to know the answer to your question!
My mom had Parkinson’s disease and developed dementia later. She lived to be 95 years old.
Dementia is something that many people fear getting after seeing our parents go through it.
I hope results from research will answer important questions that we all have.
I am fascinated by DNA testing. I became concerned about Parkinson’s disease because my mom’s brother also had Parkinson’s disease. He lived to be 96. He did not get dementia like my mom did.
We have come such a long way in medical research for so many medical issues. So, I believe that there is always hope.
However there is evidence that a healthy lifestyle reduces your risk of getting Alz.
"Our study suggests that a healthy lifestyle as a composite score is associated with a substantially lower risk of Alzheimer dementia."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7455318/
With regard to vascular dementia, keeping your blood pressure where it should be and keeping your cardiovascular system healthy, your weight where it should be, avoiding Diabetes type 2 by a healthy diet, managing stress, not smoking, exercising i.e. a healthy lifestyle all will likely be helpful.
For dementias in general
"Risk factors in early life (education), midlife (hypertension, obesity, hearing loss, traumatic brain injury, and alcohol misuse) and later life (smoking, depression, physical inactivity, social isolation, diabetes, and air pollution) can contribute to increased dementia risk "
"We judge that sufficient new evidence supports adding three additional modifiable risk factors for dementia to our 2017 Commission model (excessive alcohol, traumatic brain injury, and air pollution). We have been able to add updated evidence on the nine risk factors implicated in the 2017 Commission (education, hypertension, hearing impairment, smoking, obesity, depression, inactivity, diabetes, and social contact). Reduction of these risk factors might be protective for people with or without a genetic risk, although study findings have not been entirely consistent."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7392084/
As can be seen some of these aspects of lifestyle apply to early life, some to midlife and some to later life.
My belief is the sooner you work on a healthier lifestyle, the better, but it is never too late to make good changes although you may not benefits as much.
Thank you for helping me.
As you might know, anxiety can often perfectly mimic dementia. For instance there can be huge forgetfulness short term with anxiety, that sort of "Dang it all WHERE are the CAR KEYS again" or "Where the heck did I park the car" or forgetting words, inability to multitask and etc.
HowEVER there are things that indicate dementia. For instance, ask hubby to draw a clock face and ask him to set the clock at 11:15. Ask him to identify animals. Ask him to spell Forum (or any other five letter words backwards). Give him three words to remember, talk about other things a while and ask him those words. There are many other tests.
Is he leaving the house and not knowing even momentarily where he is? Getting lost? Is the butter getting put in the cabinet and the dog brush in the fridge? Are there real blackouts in memory even when no drinking is going on? We aren't talking we forgot to turn off the stove or oven after cooking on a low flame here. We are talking things that you KNOW are off, and that are hard to miss.
You have a history of dementia in the family but you currently have TWO seniors suffering with it. You are looking for things everywhere.
Ask hubby if he ever worries as you both age about "losing it". Tell him some things you do. The well person's response to this is usually "Yeah. I think about it. Especially when I know George 20 years and forget his name". A strong denial isn't on the good side of the scale.
I hope you are wrong and to tell the truth at this point from what little you told us I suspect you are. Is he still able to do the checkbook? Is he paying the bills? Knowing when the insurance bill should be coming?
There are lots of things online to help you quietly differentiate. Keep a diary if you like to ascertain if this is just your worry versus reality. And best out to you.
he went to the local Senior Center & was in great physical shape. He had it for many years I would've never known until a few months prior to his death.