Seems unusual...

Mrranch2 Wow Thank You! I truly found your post inspiring.

Rosebush, Cher, Lindaz, Thank you all for your comments and
sharing your experiences.
I don't want to hijack this thread, but I'd be happy to "talk" to
Rosebush & Cher about what is happening if that helps at all :~)
Rosebush, how lovely your Mum got to have this treat and was
treated with the gentleness she deserves.
I've been increasingly losing mobility for the last 10 years and
most of the time I do deal with the, shall we say less sensitive
individuals :~) "Hey, love give us a ride" usually gets a smile
and the reply "sure, but the price is the pain I live with." That
9/10 x gets a "sorry love" or an emmbarrased shake of the head.
I think what got me this time was the shock to me of the severity
of pushing my own boundaries just a little coupled with the ignorance.
I appreciate your all encouraging me to keep going out for as long
as I can. I will, because I'm not going to be locked away out of site!
I'll go out there and fly the flag for those of my dementia compatriots
who can not speak up :~)

I have FTD/LBD. Knowing something was wrong, 5 years ago, caused me to talk to my doctor, who referred me to a neurologoist, who ran many many tests and gave me a diagnosis to explain what is happening to me and some pills to slow down the progression.

The comments of ferris1 (above) are very accurate and on target. I am VERY aware of what is going on, of what I can and can no longer do, and often when I can or no longer can do something. Some days are better than others. I definitely know the differences. At first, this was very frightening; now I accept it as reality--my "new normal" (though once in awhile it gets very disturbing if I start thinking too far down the road).

Dementia, in all it's different forms, is a process, just as any other illness. Those without dementia, especially those who are new to it's presence, tend to group us all into hopeless, helpless 'things' that must be fed, bathed, toileted, etc. when that is so rarely the case. Infants in 60+ year old bodies! True, some of us, especially in late stages, can't exist without 24hour supervision and extra care, but most of us, at any given time, can (after going on 6 years I still stay home, alone with my dog and my thoughts, while my wife works, including traveling sometimes for several days at a time, though I only drive if I absolutely must). I know a man who was diagnosed with Alzheimers 12 years ago, yet he is very functional and quite literate today, just don't ask a lot of him and any given time.

Hyperthyroid, B12, B3, stroke, heart attack, UTI--what difference does it make, other than maybe to make someone feel better? We, who have dementia, have a damaged and dying organ in our body, just as those with liver cirrhosis, congestive heart failure, and breast cancer; the difference is ours is our brain, which happens to control most if not all the rest of our body.

We are aware of what is going on around us, and within us. It quite frequently is confusing, overwhelming and frustrating. I often feel very guilty because I know what is coming, aware of when it does, and am very aware of what I am doing to, expecting from and feel I am dumping on my wife.

Don't be concerned when we say something is wrong or I feel different. How would you react if there were no diagnosis? Communicate, ask questions, discuss, reassure, be patient, loving and supportive. If you're not able to do those things, find someone who can. There is live after diagnosis--We are still here!!!

Please do not let ignorant people hurt you. They gave my dad and I a small card that explained that my mom had ALZ. (from her neurologist) and most people were VERY sympathetic. Those IDIOTS that don't will, I think, someday find themselves in the same position you are now...and they will want help from everyone! Blessings to you, Lindaz

mean there not their
they and not the

Lucy, so sorry for your situation. This is easier for me to say than for you to do but try not to let other people up-set you. My Mom is now in a memory care unit and they tell me that their is a pecking order in the facility that is cruel as cruel as being in Jr High School again. These people act that way because the see what they could become. I look at my Mothers' dementia and worry that some day it could be me. Plus I think that my daughter would put up with me for a maximum of 15 seconds. & that is if I am lucky,

Lucy, my heart and prayers go out to you. My mom also had Lewy body dementia but was not really verbal about what she was fearing so I didn't know what actually was happening. She lost her mobility fairly early so that is where I saw the most frustration. Please don't let ignorant people stop you from going out. I would tell people (because my mom couldn't) that she had dementia i and we needed some extra help. I took her to get her fingernails and toenails done, first time in her life at about 80, the people in the salon didn't speak english but when do helpful because my mom couldn't sit up in the high chairs for the pedicure they brought the water to her wheelchair to do her feet, I remember the girl saying "momma you like pink or red?" I just laughed! Please please get out when you are feeling up to it. You know your limits. I found that going to the stores in weekdays before noon is the best time for the availability of scooters. If you don't mind I would like to follow you because I have the fear that i too will get Lewy body dementia. I am so like my mother in many ways. God bless and i am praying for peace and comfort for you. 😊🙏

Hi MGGEJM36.
Absolutely not offended :~) Looking back with a dear friend who remembers for me we can see that this was developing before I was widowed 8 yrs ago. Saw Dr. many times and either dismissed or given some other cause. So hence the real relief despite the fact that this disease is so horrible.
I really appreciate your kind words about what I'm doing, it's not always easy :~)
I'm still learning about my own boundaries and what I can/should do.
For instance I know if I start cold sweating and it's not hot then I'm overdoing things. Usually I stop a few mins, sit down and start again.
Fri I was shopping with Support Worker, didn't have either scooter or wheelchair despite the fact I can only walk 1m. It was a quick in/out to grab pet food lol. Sweating started, I leant on trolley thinking we'd be out in a few mins. 2 mins later I'm hanging on to my trolley and shaking violently (looks like a Grand Mal seizure) though I'm mostly upright. We're waiting to pay so I'm stuck, plus I can't walk till this passes. I can just about speak though I stammer/stutter as my words are shaken out of me.
I explain to worried cashier that I'll be ok, I have a specific kind of dementia that affects my body as well as my brain. It will pass once I've rested. He was great about it.
The customer behind me not so, "you've no business coming out like that. You could terrify the kiddies. Look like the bl**dy Elephant Man on drugs you do. Frighten the kiddies and old folk. Give someone a stroke you will. Best thing for you stay in doors and shop online."
I shook myself back to the car in tears and feeling totally crushed, I'd never thought of my effect on others. I spent the weekend with doors locked & curtains closed (I'm living alone with fur babies since being widowed), feeling like a monster.
On Monday I went out again, I realised there's a lot worse sights out there any day of the week and while I can be out I've a right to be.
So you see why your lovely words are especially important right now.

Lucy, I am sorry to hear about your diagnosis and I hope nothing I said offended you. It is a disease that can strike anyone at anytime. Personally looking back I think my mom has been dealing with it for years but we didn't know as she would not go to a doctor.

I think it is wonderful that you are doing what you are doing and I wish you love and peace always.

I care for my widowed BIL who has a dementia, most days he doesn't accept the diagnosis or remember it. Though yesterday he asked me if he had Aspergers. He doesn't know of anyone in his family with dementia so he can't have it (in his mind). The family history is cancer and that is what he fears.
I was diagnosed 3 weeks ago with dementia with Lewy bodies and a part of me is relieved that now I know what is wrong. I'm not going mad, instead I'm slowly unravelling. Yes, I'm fully aware and I grieve for my loved ones that there will be a day I don't know them. I am aware it won't upset me because that part of me is gone. It saddens me now so to combat it I remind them how very special they are to me. I'm trying to record memories of times with my loved ones not so much to remind me later. As to remind them I did love them very much and believe that very deep down somewhere in myself I still do.
It is terrifying now, when I can see what could be ahead, so I'm trying to live as well as I can and make lovely memories for everyone.
I'm also being as open/honest as I can be about what is happening. Dementia sadly doesn't just visit the elderly, I'm 58 and people are shocked to find I have this. If I speak out now maybe it will help others coming behind me.

My mom does the same thing. She knows something is wrong but can't put her finger on it. My first response is to distract her, but this sometimes agitates her more. On these days it seems to calm her if I gently tell her that she has dementia, she almost seems relieved because she thinks she has gone crazy. I explain that she has not, that because she is getting older he brain just doesn't function like it used to, and that this is OK, that seems to help her.

But that may not be the case for your loved one. My mom has always had an intense fear of going "crazy" as she would put it, the thought of dementia always seemed a normal aging process to her. So that may be why she is comforted, I really don't know. I agree with the quote that if you know one person with ALZ, you know one person with ALZ.

I do recall that my husband's grandmother never questioned what was wrong with her when she had it. She would just explain how scary it was for her. She was able to explain it in such a coherent way that it made me definitely understand that they are still "in there". It always broke my heart when she would tell me that. It's such a mean disease. It robs everyone of so much of the most valuable things in life, our memories.

My mom had Alz. and died last year from it. She never recognized it in herself. I think it would have scared the wits out of her! In fact about 7 years before she was diagnosed - so 15 years before she died, her SIL was diagnosed with Alz, and my mom laughed about and said it couldn't have happened to a more 'deserving' person.
the irony of this is NOT lost on my brother and I....especially since we know what a dreadful disease this is on the whole family....no one EVER deserves this disease!
Blessings to all, Lindaz.

A friend of mine will turn a centenarian on February 27 of this yr. We recently had a conversation and she actually told me "you'll have to repeat all this to me tomorrow, because I won't remember any of it" (has severe dementia bordering on ALZ).

In my case it is my father but also on the same floor with my dad are two other ladies at Victoria Hospital London Ontario. These ladies are losing their husbands both from reactions from anesthesic reactions as their husbands went in for simple hip and knee replacements which resulted in calcification of the brain. For one man, his body is all crumpled up like he has MS but I (and his wife) can still tell that he is "in there" on the "sparkly/bright" days. Pretty much the same thing for the other fellow. Their children are also afraid that this is their fate. Both men have fine looking bodies that have trapped them in there like a Stephen Hawking kind of scene. It's so sad to see the ladies. Both are very healthy other than stressed out as caregivers. On one sparkly day "Harold" remembered how to dance and he and his wife danced three dances to the radio on his favourite channel. "Arthur" got a stuffed dog and he thinks it is their old puppy and he carries it around. Harold was a mechanic and owned a car dealership. Arthur ran a well known cement company. He thinks he is on one of the some 58 cruises that he and his wife took. He is still wandering around trying to sign up people in the unit (then he gets his trip for free). So ironic what the mind hangs onto at the end stage. Dad is still either digging for gold or working the hoist getting the men up and down the mile deep shaft up home in the North (Timmins, Ontario) or building the cottage at Sewell Lake where our cottage was. I have pix of all the good times enlarged to 8x10 all around him (his army days, when he was a great skier -could jump 58' in the air as a dare-devil hot dogger and now there he lies with legs thinner than mine (and I'm quite small). His eyes are dim some days and I think he is gone and he stops eating. Then I feed him bacon or pizza or some other food he remembers that he liked and he sits up in bed and eats a full plate of spaghetti the next day. My heart is like an elastic band being pulled and let go and I am weary beyond weary and still coming home to a sweet 11 year old boy who deserves and expects his mom to be "all there" for the nightly homework with piano lessons and spelling dictation work. I cook at night so I will have food for everyone and hardly eat myself and my head just makes the pillow at night and then I have to do it all again. I know I will not regret this time with my dad and I want to do anything and everything I can to make these last times together special but God help me I am so, so tired.

Whoever told you a person with dementia does not know themselves something is terribly wrong with their thinking????? My husband tells me all the time he is, "not thinking right" mostly because he can't think of more words to describe what he means, but "going downhill" is merely the emotional side of dementia where their body just doesn't respond like it used to. It must be terribly frightening to know there is something wrong with you and your thinking and you just want it to be like it once was. Our loved ones with dementia need time to grieve because they seem to "know" their time is short. I am also saddened to know what my husband could once do, and now I have to remind him what to do...

Dad knows something is wrong as well. He is 82 but he is also dyslexic so he is never sure if it is because he is "wrongway Willie" as he was called and teased as a kid which dug a deep hole in his self confidence or if it is just "old age". Is old age then dimentia? Do all old people get dimentia? I have known some that were sharp as a tack as their bodies broke down to where the major organs (heart and lungs start failing) and as my father has said "boy I am out of luck now" (We are Irish in decent). Lord oh Lord still able to crack a joke when he has under six months to live. Do people out there know that Alheimers has a mortality rate of around 7-8 years? Has anyone heard of people either outliving this or living shorter lives? Dad has advanced Silicosis from working in the mines of Northern Ontario as well. He is completely deaf in one ear and has a cataract in one of his eyes so basically he is a near "walking Helen Keller", so to speak with lung and now heart problems. The wonderful doctors and people at the IVey Eye Institute of London, Ontario, Canada are still going to correct the cataract so that he is able to see his family in these last months. I'm praying for a miracle and I don't mean to over do it and be a Polly Anna but this guy has worked too hard and for too long to go out like this. His biological mother had Altheimers. As for me, my memory sucks and I have to write everything down on notes and post-its or my life would fall apart. I also have Altz. on my mothers side w my aunt being struck down at around age 65 and now unable to recognize her own children. I am 52 and afraid at times that my fate is sealed. I keep trying to do mentally challenging things such as reading and writing like I am doing here. I hope it helps. If not, then I will say "good bye" now so I don't forget. I think Glen Cambell was very smart to start writing notes to his family ahead of when he would no longer recognize them. I have already started doing this myself as a precaution. If nothing happens then I have written my memoirs early but if I am to develop this disease I suppose I will have said what I needed and wanted to say. Thank you for your time in reading this. :) SILLYHEART21 on YOUtube. A song. A gift for the weary caregiver. Prayers to you and your families. "Need A Breath of You" -just a little ditty sort of like about Jack and Diane but now more about how more than ever I need my father and he needs me. Blessings.
youtube watch?v=a_ENi8hdlRs

My mom and dad have severe Alzheimer's. Both, especially my dad, are well aware that they have a sickness. My dad has often confided that he can't walk or think like he used to. Yes, they know.

My mom and dad have severe Alzheimer's. Both, especially my dad, are well aware that they have a sickness. My dad has often confided that he can't walk or think like he used to. Yes, they know.

Some patient, although rarely, become very aware that some things are changing and they are losing their full mental capacity. When that awareness settles in, the best thing we can do is to encourage them to do their best and continue to remind them that we love them.
They may be feeling guilt or concern about overwhelming their loved one. The best thing you can do is to help ease their stress and make sure they feel loved.
It also helps maintaining a similar schedule day-to-day, it helps with memory consolidation.

Yes, yes , & yes they know early on. Mom when she turned 85 (now 91) called me and said "Something is going wrong with me." Please let me stay with you (my Husband & me) for two weeks to get my affairs in order before it is too late. She said that she was scared. I called her 4 days later and told her it was okay. She said NO it is too late. My brain is going. You waited too long. Now 91 and she doesn't know that her clothes are in the closet. Doesn't know how to cook. Forgot how to use the micro-wave. How to wash clothes, list can go on forever. She is also very mean, & nasty. So yes they know and I have heard other cases in which people know. Wonder if I will know when or if it happens to me???

All I can say is be open to the possibility that it's something else. My client was diagnosed at Emory. Her diagnosis was wrong. It was hyperthyroid. My friend's diagnosis was wrong it was vitamin B12 deficiency.

My husband is 67. He was diagnosed at the age of 57 at a leading memory center in California. He is now in the late middle stages. He has known the whole way through his Alz journey he has Alzheimer's. In the last few months he has been telling me he is dyeing. It may not be common, but it does happen. I have read on other sites of people saying their loved ones do it also. As they say, if you know one person has Alzheimer's, you know one person that has Alzheimer's. Everyone's journey is sad, yet unique. I am praying for you both today.

Perhaps your dad's diagnosis is WRONG. A very careless neurologise diagnosed my mother with ALZ after spending 15 minutes or less with her. She had a UTI. A client of mine was diagnosed with ALZ when what she really had was severe hypothyroidism. One of my collegues was diagnosed with dementia when he had a vitamin B12 difficiency. I recommend that you get another doctor for at least a second opinion. ASL is a catch-all diagnosis given when the medical establishment can't figure out why the person is behaving in a certain way.

My mother has Alzheimer's and says very often that something is wrong. It's not uncommon. She also says, in her own way, that she wants to die.

Faith in the Lord is what gets me through the day
" I can do all things through Christ which strengthens me"
Philippians 4:13

"It will be worth it all - when we see Jesus comes to mind`. May these words be an encouragement to you who are carrying a heavy load.

My wife is near 80 and she talks about having vascular dementia. She knows she forgets a lot. My approach is that of saying only encouraging and positive things to her. She then seems to forget that the "day" is bad. Today she told me she hadn't slept all night and was nauseated, and wanted to sleep all day. She will forget that and when I arrive she will greet me with a kiss or a angry face. I really don't know how she will be when I see her. She is happy in the assisted living area and I live alone and that is almost too hard to do but if I didn't live it would be the early death of me so to speak. I've seen it happen in others and of course, God has our days numbered so I really may not die but just to make it easier for me it is the best arrangement for us. She has many health issues and I don't have to be the nurse looking after her every need and be up and about even some nights almost all night. God has a plan and it is best for us. We don't know the weaver's side of the wearing but see the worst side since the knots and strings are not so important, but when we see the side God sees it is a beautiful weaving. May my life be a beautiful picture of what God has in store for others to see. The song

Anne, that was a perfect answer! The love you have for your dad is clearly evident. 🙏😊

My husband is 76 and is in the final stages of vascular dementia. This morning when I got up with him he told me something is very wrong and said he was dead. He said that several times. So that tells me that at some level he knows. He also was clutching my hand as though trying to keep himself here in this life.

My dad realized what was happening early on, because he had watched his dad go through it. Even in mid stage when he realized he was having a memory issue about something he would on occasion point out that he was getting like his dad.