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I Have Alzheimer’s or Another Dementia
Alone in this
Brooke - glad you posted about this. Very common.
I was one of those who USED to tell people about having ALZ - maybe I thought they would cut me slack. But I quit after a plumber came and walked off with a great bathroom faucet which I did not understand until he had left drive way.
Yes, talk about your issues here where we ALL get it.
I am married and living alone with it, most people are not cut out for caregiving and their reasons for staying are not helpful.
One other thing I noticed, my short term memory may be cutting out but a lot of other abilities remain. As I went along dealing with problems before diagnosis I learned (unknowingly) how to compensate.
Some of us have wonderful support, others are ignored, marginalized. It is awkward to be put in a position of trying to explain to people, even those you really feel close to, what it feels like, what it means to have dementia.
Right now, or whenever you feel stressed, don't bother with those who don't get it and beware of some who pretend they do.
Please write more. We are here to help each other LIVE WITH dementia. There are no mistakes, no shame. It is very difficult but it is doable esp with support of others who have been through the fires already.
Yeah, I haven't met anyone that gets it either...and they invariably say dumb things like that they forget things too. It is so invalidating, and sure makes one feel isolated and alone.
I am sorry that the public is still so far behind in understanding dementia. It seems all they know is the end of life scenes...which is likely because that evokes the greatest pity and largest donations. I wish people understood, especially with young onset, that we are still here...still pretty competent...and still able to function (with help)...long before we get to the invalid stage.
Hi, I have young onset...I too wish to meet others who have it.
I just did the math the other day on how many people likely have young onset (they figure 5%-10% of those who have regular Alz. They only count people with actual ALZ (which is only 60%-80%) of dementia...and they only count those 65 and over.
Anyways, in the whole United States, that is 636,000-742,000 people with young onset dementia...and roughly at least 12,000-14,000 people per state. So you, me, and the rest of us - we are NOT alone.
One of the very false misperceptions is that there are not very many of us, that couldn't be more wrong.
So hang in there. There are some really great people on this site. There is also a young onset section on this site too.
Nice to meet you.
I am caring for my mother, and she has versed to me almost exactly the same thing!
I am so sorry that a lot of us can't put ourselves in your shoes. It's really hard to see something that only you can see, and most of the care partners I know (myself included), are trying to convince themselves as much you (i.e. it's not that bad, I get bad memory too, it's normal, etc. etc.)
My mother is very vocal in new symptoms, or struggles, and in her hopes and fears, so I feel like it gives me an insight into her life that I wouldn't have otherwise. In return, I am very vocal as well, as I feel like we have a better bond pwd to cg.
I don't think anyone can really know what someone else is going through, unless they've been living with you for awhile, and even then, the battle is yours alone to face.
The best we can do is to stand by you and hold your hand through out, and keep telling you, no matter what, it's going to be okay.
I hope this helps, and keep fighting!
Hi Tammy T,
I am so sorry that you are going through this.
Because of the blood vessel issue, it sort of sounds like it might head in the direction of vascular dementia. And your doctor is right, neurologists know much better about these things.
I know that this is all very upsetting, but if you can try to find a way to reduce the stress you are experiencing. Stress makes confusion much, much worse...so anything you can do to get on top of stress will help you to feel better.
When I am scared and facing a tough situation, I try to remember that I will feel differently in 3 days time. That between the moment where I feel like crisis is happening and 3 days...the sun will continue to rise. I think of all the other times I felt like crisis what happening and it always seemed better a few days later. The urgency and crisis feeling usually doesn't last...so just try to ride it out the best you can.
On the good note, if it is dementia...it is a long slow process and you will likely have a long time to prepare. Many here have had it for years and we are still here talking about it.
If you have it, you might one day at the very end forget names...but you will likely not forget them. You wont lose how their love feels. And you don't lose who you are. Also vascular dementia works differently than Alzheimer's. And, it might not be it at all.
Most often when we think of Alzheimer's we see end stages and horror stories, but there is so much life (good life) between now and then...and years. And many do not experience the horrible images the media shows us. Many have wonderful peaceful journeys with it.
You also have family, sounds like a wonderful one, and you have some really supportive wonderful people online here too...and we will all help you through the coming times. You are not alone.
You are also stronger than you know. You are a mom, so you know how they took you to your limits as babies...and somewhere, somehow you found it in you to keep going and keep being there for them? You will do the same now. You are stronger than you know...even when it doesn't seem like it.
If the sadness or anxiety is really getting the better of you and you cannot get on top of it, you might consider seeking help and someone to talk you down through it in person.
You might also consider just giving yourself the space to grieve and be scared. It is a normal human response. Strong emotions usually don't last long. They usually say to think of them like a surfing wave...and you just ride it out until the intensity goes down.
Distractions might help. Finding something to do that is so engrossing and engaging that you can get your mind off things for a while during the time you are waiting for that appointment. I find Lifetime movies and Sunday Afternoon Matinee type movies are usually simple and engrossing enough to draw me in and keep me fixed on what is happening. Marathon watching 7th Heaven or Touched By An Angel might help you pass the time.
Hang in there. We are here if you need to talk too.
A very warm welcome to two new Members.
Brook Marie Mae, I am so glad you have found this wonderfully supportive place. I have spent time in British Columbia and just loved it; beautiful place with warm and welcoming people. I am so glad you have a supportive husband. He too is more than welcome to come and join the Spousal Forum. It is a warm and welcoming place with much support from Spouses who are on similar journeys.
Tammy T.; you too have a very warm welcome. NOTE: It appears you have not yet seen a Neurologist who will be better able to interpret what your MRI results really mean.
Tammy; you may not have Alzheimer's Disease. In some people, the vessels are smaller for one reason or another AND as we age, our brains will show some "shrinkage" as a normal part of aging. That does not mean that any type of dementia is present or even will be in the future.
So; hang tight until you get an absolute diagnosis. The experts need to "rule out" possibilities as well as "rule in" other factors and other causes.
I send a warm hug to each of you and send best wishes your way,