Post by cricketwife on Oct 15, 2019 20:07:32 GMT -5
Pardon the brain dump. I’ve been concerned for 5-6 months that my mom has dementia. I don’t know if it was denial or wishful thinking or whatever but I’ve just spoken to my aunt (my moms sister) and she described her just as I’ve been seeing. She even said “she has dementia.“ Hearing her say those words just made it very real for me. It’s like I’ve known it but haven’t wanted to admit it. So I don’t know where to go from here. She lives states away - a 14 hr car drive. She lives with my stepdad but doesn’t have family nearby. I don’t know if I should bring it up with her? Or maybe she’s blissfully ignorant? I certainly don’t want to upset her if she isn’t aware enough to be upset. Should she be seeing a doctor?
I’m sorry. I know this has nothing to do with this board. I’m just heartbroken and I don’t know who to ask.
"Hello babies. Welcome to Earth. It's hot in the summer and cold in the winter. It's round and wet and crowded. On the outside, babies, you've got a hundred years here. There's only one rule that I know of, babies-"God damn it, you've got to be kind.”
Post by Patsy Baloney on Oct 15, 2019 20:20:45 GMT -5
The conversation will be uncomfortable, but I would definitely be nosy and see if she has been in for a routine doctor appointment lately, and voice concerns about her memory. Slipping happens. My dad is in his 80s and I think has not called me by my name but my sister’s since the 90s. But clearly, this is beyond a creeping forgetfulness of aging.
There are many things that can contribute to confusion, forgetfulness, etc. and those should be treated as soon as possible. She may not have dementia but another issue. She may have dementia and need to be treated with what is available to patients to see if a major decline can be avoided or prolonged.
I’m very sorry that you have this concern. I hope your mom takes your worries seriously and follows up with a doctor to help her be as healthy as possible.
I started writing a whole thing and it disappeared. We’re going through this with MIL right now. She saw a gerontologist who made the initial diagnosis and I don’t think they’ve been back ever since. We try to keep things as routine as possible, and when we do, she’s pretty good. Once things are out of routine, it’s so challenging. I’m not sure where this is going and it’s hard day to day, but we’re in an ok place right now.
I’m happy to listen and help as much as I can. This is such a frustrating process and it can be so hard to know what to do.
I’m sorry you’re dealing with this. I don’t have any advice, unfortunately - my grandmother lived with us once her dementia started progressing as d later lived in a nursing home but I was only about 10 or 12 so I didn’t know much about it. It’s such an awful thing to experience, for all involved.
Is your stepdad supportive? Forgive me if there is a backstory I don’t know, but do you have the kind of relationship where you could call him and ask what he wants to do? Would your aunt be helpful if you asked?
My mother had vascular dementia and likely had suffered from it for years before being diagnosed as she was in denial and had put in place a lot of coping mechanisms. They went out the window when she was hospitalized for hip surgery and she had nowhere to hide.
100% talk to her/your stepdad/your aunt about it. As Patsy Baloney mentions there are lots of things that can contribute to confusion (dehydration and UTIs are a huge factor). It will likely be very upsetting but it's the only way to get a proper diagnosis and put help in place. It is also very important to know where she is in the progression of the disease.
Unfortunately my mother essentially refused the diagnosis, which made it very difficult for me to help her and the last two years of her life were full of conflict and frustration.
I’m so sorry, it’s so hard. I’m very worried about my mom and everyone blows it off as just being scatterbrained / getting older. I would look at your local council on aging for resources and how to approach. I think it’s important to get affairs in order while they still can be involved, and some meds work better the earlier you begin — maybe those arguments would be convincing?
I am so, so sorry you find yourself in this position. Caring for our ailing parents is really tough, and I imagine it is much worse with her being hours and hours away.
If I were in your shoes I would start with coordinating a plan with your aunt and stepfather. Ask him if he notices it, what he is doing to help, what YOU can do to help from a distance to support him and help him. See if she is going to doctors appointments for this already, etc.
My father has different health issues (though I think he has a tinge of dementia too) and I have found that when I come to him in a non-confrontational way and just offer to listen and be there and address my concerns out of love, while he might be defensive about it at first, he usually comes around. Can you call your mom and tell her you noticed some stuff and you love her and hate to even talk about it, but this is what is making you nervous? And see what she says and go from there?
There is no right answer; but I wish you so much support and peace as you go through this. It really sucks.
I'm sorry. My mom has FTD and it's just awful. She has no short term memory so she has no idea that anything is wrong and she just constantly asks the same questions over and over again, has total loss of empathy and basically the person she used to be. 3 years ago what gave it away was definitely memory related issues - forgetting to pick up my kids, forgetting conversations, lack of housework, me having to repeat a lot of things...even with me being local and my dad there it was hard to get her to the dr and get an MRI for diagnosis - took almost another year. There are meds to slow progression so I would see if you can at least have your stepdad get her in with her PCP, if not a geriatrician. Meeting with a social worker about local resources was also very helpful for us, and an eldercare lawyer to get affairs in order.
I’m so sorry you are going through this. I have different issues with my Mom (Alzheimer’s), but I’m very familiar with the feeling of denial.
My experience is obviously different, but I would recommend that you talk to both your Mom and Stepfather. For your Mom, she may be aware of the dementia. It’s totally scary. If you’re in denial, she probably is as well. Or angry. You will need to get her to a doctor to see what is going on and for signs of progression. You will absolutely need the help of your Stepfather.
Ugh hugs. I'm so sorry that you're finding yourself in this situation.
My father was diagnosed with FTD in 2013, but showed symptoms earlier. He was only 56, which complicated the diagnosis process as he was 'so young', the doctors didn't naturally jump to dementia initially. He did not start with memory issues, but cognitive decline and difficultly with verbal/written communication.
You'll need to chat with your mom and step father. I'd start separately, with your step father, maybe aunt as well, and compare what you've been seeing/noticing. Then chat with your mother. If she's noticing the decline, she's likely terrified. (And possibly depressed. My father's depression was terrible in the early stages of his dementia) If she's not noticing, she might be further along than you think.
If she's agreeable, get in with the doctor quickly. I've heard some doctors refer to a gerontologist. My dad's doctor sent him for a neuropsych eval. During his neuropsych eval, they did some one on one questioning, took a detailed medical history, did MRI/CT Scan/bloodwork, interviewed me and my dad's wife, both with my dad and separate from my dad, so we could speak freely without him feeling self-conscious. My father and his wife hadn't been together very long, so I was there to help with the family history/his earlier medical history. If I recall correctly, this took several hours.
A few weeks later and they gave the diagnosis of Frontotemporal lobe dementia. They set us up with a social worker, a neurologist, and made recommendations for speech therapy to improve communication. In some cases, a neurologist can try meds to slow the progression of dementia. It didn't help in our case, but the sooner your mom could try meds, the better.
I cannot recommend enough looking into the local chapter of the Alzheimer's Association. (both locally for you, but also the chapter near your mom). I'm sure the programs vary state to state, but ours had a 'Getting Started' weekly seminar that we found very helpful. It was a 6 week course, and each week had a different topic - modifications to make at home to keep your loved one safely in home for as long as possible, another week a lawyer came and spoke about things to get in order while your loved one is still able to sign, another week was about caregiver support, etc.
I'd also recommend checking out the senior center and library near your mom for activities geared towards seniors. Our library had a 2 hour meeting once a week for seniors in the early stages of dementia. They did some light exercise & normally spoke about different topics each week. This meeting allowed the loved ones some free time and it allowed those with dementia to get together and talk about whatever they might not feel like talking about with loved ones/doctors. The senior center provided knowledgeable people who walked us through my dad's medicare application. They provided a bus which would bring him to an adult day facility for socialization (and to keep him safe while my step mother worked). They were also able to get us in touch with home care facilities when he was unable to be alone in their home safely. And ultimately, nursing home recommendations with memory care units, when the time came for that transition.
It's all difficult to process. Being long distance really makes everything more challenging. Try to have her sign a health care proxy appointing your step father & you as a secondary, soon, as well as any HIPPA releases at her doctors so you can call to get information on her behalf.
Sorry for all this info - some of this is beyond where you're at. Feel free to PM me any time! Hugs
I'm so sorry. Brain diseases are the worst. Yes, I think you need to connect with your stepfather to see whether he has noticed anything or has already taken any steps towards diagnosis or treatment. I do think it's important to take your mom to a doctor and describe what you've noticed so that they can check it out and provide a diagnosis. There are acute, reversible diseases that can present with dementia symptoms. You won't know until you get it checked out.
My mom has lewy body dementia, which presented last year with a sudden onset and rapid decline. We were not thinking dementia at all because of how quickly it came on. So we did explore many other avenues with her doctors (infection, tumor, prion disease, normal pressure hydrocephalus, and many others). It was super tough to get her to see a doctor or do any testing. Her disease made her very anxious, delusional, and paranoid, and she would refuse to see the doctor. I hope that your mom is more agreeable.
A friend of mine's dad who lives out of state had a stroke. I helped him find the Council On Aging for the county where his dad lived. There might be a state agency that can help. Mostly they will just offer referrals, maybe a little bit of help navigating what free/reduced priced services are available.
The health care proxy thing is very important. You might also want to ask about getting financial power of attorney, so you can check to make sure she hasn't been scammed recently, and check to make sure she's not behind on any taxes (property taxes are the big one if her house is paid off). A wills/estates/trusts attorney in her state should be able to help with the paperwork for a price in the mid-three/low-four figures.