As I see my mom sitting in smelly clothes, matted hair, poop encrusted feet and insisting she "took a bath" this morning, there's no way I'm inflicting all this on my kids. If I help her with hygiene, she says "I hurt her"...so I don't fight these battles daily.
The thing is, my grandpa was very healthy and a respected man in his town (in India), was a headmaster in school, walked daily, did yoga, controlled his diabetes and yet when he died, we are all secretly relieved since he lived the nightmares of dementia -- constantly hungry, peeing everywhere, not sleeping thru the night etc. When I look back, I'm so stunned and sad at the way his life ended.
My mom also became very forgetful around age 83 and I had to get her from India to live with me here. She was in a senior community there but there was no-one to check in on her daily and it was not a memory care. I see her going my grandpa's way, foraging for food, generally soiling herself. (Btw, I had posted here about her diarrhea after the 2nd dose of covid vaccine). Mom of course, was nowhere near active and engaged like my grandpa. In her youth, she was just interested in Bollywood gossip and sitting around. This trait is really annoying because now she will sit in the family room all day and will go to her room only if I "yell" at her.
Will I be the same way in my 80s? My husband and I will of course move into a senior facility etc etc but how do I prepare myself for the chance of being like my grandpa and mom? I'm 55, in good health so far, work in a school, try to volunteer and not let my mind shrivel up. But lately, I worry a lot that none of this will help. Should I get tested to see if I carry any gene for dementia??
Not everyone who has one or even two APOE4 genes develops AD. And the disease occurs in many people who don't even have an APOE4 gene, However, you may not have acquired any APOE4 gene. Other APOE genes that may have been passed to you are 2 and 3, which are not risk genes for AD. In fact APOE2 seems to reduce the risk of AD.
Getting tested for AD genes is a personal choice. There are pros and cons about getting tested. If you have a risk gene, how will you feel? Would you be concerned that every time you have a memory slip up that it is a sign of dementia? Do you already feel that way without being tested? On the other hand, knowing you have the gene will allow you to start planning for the future like creating POAs, whether you ever acquire AD or not. On the flip side, having these results in your medical record may prevent you from getting disability or long term care insurance.
So you see, having genetic test results doesn't guarantee you'll get AD, nor does it guarantee you won't.
Most clinicians advise against getting tested for the genes until you see dementia symptoms. Rather than you making that decision alone, schedule an appt with a genetic counselor to help you decide.
Dementia knows no 'education levels' or 'health kicks' or anything, really..........it affects whoever it affects. In fact, dementia has affected my mother's entire family, for the most part, probably b/c they all live to be in their mid to late 90's. THAT is more than likely 'why' they develop AD and or dementia more than anything, b/c they live too long.
I refer to my mother's family b/c we do not share the same genes. My biological family all died before they reached 60 and guess what? None of them had dementia.
My plan is not to worry about getting AD or dementia, or getting tested for it, either. But rather to have a specific living will put in place that discusses what to DO if afflicted with dementia or AD. Here in Colorado we have assisted suicide and that's MY wish for myself. Not to prolong my life in any way, shape or form, but to END it while I'm still in possession of enough of my senses to do so. No Memory Care, no burdening my children with diapers and gibberish, none of it. Not for me, my DH or my children. I will bow out gracefully if and when the time should come.
Live life with wisdom--exercise, eat sensibly, care for yourself and others. My wife is 12 years into Alzheimer's, confined to bed at home for the last two and a half years, but still smiling a lot, friendly and a loving person. We are all unique persons. I'm sorry that dementia has impacted your family so greatly, but that does NOT mean it will get its tentacles on you.
Love and Prayer
Our chances of avoiding what family members have suffered, can improve dramatically if our lifestyle is better.
”the chances of developing dementia rise significantly as we get older. Above the age of 65, a person's risk of developing Alzheimer's disease or vascular dementia doubles roughly every 5 years. It is estimated that dementia affects one in 14 people over 65 and one in six over 80.” Sometimes I wonder if we develop dementia no matter what we do? I’m not sure. Strokes run in my family so does vascular dementia so I personally feel I don’t have any hope 😆. But like they say, try to prevent it by eating healthy and keep active.
First, we must survive to old age in the first place. After that, there are hundreds of ways we can get dementia.
“Dementia” is a broad “catch all” diagnosis used to describe patients with any type of confusion or lack of capacity — there are a multitude of causes— from a head injury to renal failure. So if you learn that you don’t have the ALZ gene, there is still no guarantee.
What can you do? Look both ways before crossing the street. Eat well. Take your medicine, wear a seatbelt and bike helmet.
None of us get to choose our problems, just how we address them and cope with those things we cannot change.
I may not be the only person to write this, but I would give a million bucks to get the encrusted poop off my mom’s foot if I could get one of her hugs. Or give her one of mine. Or to see her laugh or smile or even to hold her her hand through hospice on the hardest of days.
So, chin up! I know this isn’t what you were expecting when your mom came here, but someday these will be “the good old days.” Don’t forget to enjoy life. Try your best not to feel resentful. Don’t neglect other relationships.
If you can’t live with your mom, there are many residential options.
I’m sure you are working to be gentle with your mom and it is emotionally painful when she says you are hurting her. There may really be something else hurting her, though. One night my mom was crying out that she was surely dying and she was in intense pain and I eventually discovered she had a very painful (and not readily visible) ingrown toenail.
if you want her to stay with you, a geriatric psychiatrist may be able to help with medications to ease her stress so she will feel more cooperative with healthcare providers. She is going through a crisis too.
My feeling is adjust to needs of life as it comes along. My heart goes out to you.
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