My husband has gone from moderate to severe Alz. But recently he has started talking non stop about how he is "going downhill" and that there is something "really wrong" with him. We had never heard this before and it seems quite uncommon for an Alz patient to be aware that they have something wrong with them.
Have any of you had this happen?
" I can do all things through Christ which strengthens me"
Philippians 4:13
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.
youtube watch?v=a_ENi8hdlRs
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.
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.
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.
I think it is wonderful that you are doing what you are doing and I wish you love and peace always.
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.
they and not the
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!!!
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 :~)