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Old 07-17-2012, 03:41 PM   #1
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Stages of Dementia

I went to see my mom today who is in stage 6 of Vascular Dementia. She is becoming incontinent. She was very quiet except when she cried, which she does alot. I fear yet another UTI is coming on also. I realize it's impossible to predict, but I wish I knew how much longer her journey in this disease was. I have had nurses tell me they think perhaps 6 months to a year because her steps down are coming rapidly, and the UTI situation doesn't help. Then another nurse will say moms doing well. I suppose compared to some they see she is doing well, but it's just so confusing for me. She went from stage 5 in March 2012 to stage 6 by the end of June. Was also told that the Dementia itself won't end her life, but something else will. I don't want my mom to die I really don't, but the truth is I pray every single night for her nightmare to end. I wish her peace. I looked at her today and it's as if a light has gone out in her eyes, and then she'll just cry. I try to become a part of her reality and not make her try to become a part of mine, but it gets more difficult every visit. Then as I try to leave without breaking down and crying, a well intentioned nurse will say moms doing great. In february I had a doctor tell me he gives my mom 6 to eight months tops. He's said that while it's not medical based he feels safe in saying that with the death of my father she simply broke. He also said not to be angry with my dad because it's very common for caregivers to let themselves go a bit and devote all to the spouse. Plus it's common for him to have covered up for her and the disease. I want you all to know that I feel for each and every one of you. We are not alone! If any of you have any insight into stage 6 please share. I've just been doing internet searches. Thank you all so very much.

 
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Old 07-17-2012, 05:47 PM   #2
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Re: Stages of Dementia

I get what you are saying ksefitz. I have said every word you said there many times over. In reality we have already lost our loved ones to this disease. We need peace for them and for us. There is lots of well meaning speculation in your post but the answer to your question ...When?.... nobody knows!!! The best guess can be years off. The averages or expected outcomes can be very wrong. It could be tonight and it could be years from now. This disease is a true test of perseverance and patience.

My Dad had vascular dementia. He was diagnosed in 1997 and died in 2010. Yep, 13 years diagnosed. I can tell you that Vascular Dementia is not a steady decline as is typical with Alzheimer's. Usually there is rapid decline related to a medical episode (especially heart or circulatory related) and then a period of stability. Dad had several periods of rapid decline followed by rather long periods of stabilization at the new level. Dad took his last decline in January 2009 with A-fib. He stabilized until March of 2010 when he died.

Just a note on what Doctor's tell you.... Dad's first heart attack was in 1977. He was 57. We were told he would not survive the night. Obviously they were wrong. He had another heart attack in the mid 1980's. He was not supposed to survive that one... but guess what? He went into 5 bypass surgery with a 49% change of surviving the surgery. He did! He went on to have several heart stints, femoral artery stints, gall bladder removal, and A-fib. He was just short of his 90th birthday when he finally left us. They go when they are ready regardless of what the doctor says.

Please know that nothing Dad did caused Mom's problems. He may have covered for her but that was out of love. It is how we take care of each other. Yes, as care givers we do have a tendency to ignore our own problems for the sake of others... but those are out choices. No one can say that what Mom did caused where she is now.

What you need to do now is spend time with your Mom celebrating the life that she has lived and enjoying the moments you have left. Please do not waste this time in grief. There will be enough time for grief after she is gone. Until then hold her hand, tell her you love her, tell her about your days (even if she doesn't understand). Find the moments of you that are left for you both and make memories to carry with you. Anticipatory grief can take away the time you have left if you let it.

Love, deb

 
Old 07-17-2012, 08:08 PM   #3
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Re: Stages of Dementia

I tried to find the stages for vascular dementia and found only the 3 stages for dementia only. Alzheimer's is a specific type and has 7 clinical stages. I am not sure vascular dementia has 6 or more stages... Also I found that the internet also says vascular dementia has about 5/6 years of survival rate but Deb's dad lived 13 years...
So it is not clear and everyone is different.
These 3 general stages are: early, middle and late. You are probably using Alzheimer's 7 stages for Vascular dementia. But vascular dementia is not as stable as Alzheimer's like what Deb mentioned.

My late FIL died on July 8, 2012. However back in 2007 or 2010, the home care nurse did predict his death or fast decline but he didn't really fast decline until last year in May when he stopped walking and talking. His heart gave out (heart attack or stroke) as he was becoming too weak from eating not much and being dehydrated. So he didn't go to the point of needing feeding tube or starving to death yet. You can tell when Mom gets real sick. When it is in late stage, she would be very frail. Incontinence is not too bad - my late FIL had had it for a long while. My late FIL actually died in stage 7 of Alzheimer's.
You need to check with the doctor about this. Sometimes a nurse is just guessing. One thing you may need to know is, even if the nurse says she is stable, you should be cautious that she can still become weak and may die. My late FIL died a day after the nurse said he was stable. Then later the director said my late FIL was not eating well - not enough warning! Again, it is the family that has to watch out. When she is actively sick, pay more attention.

Take care,
Nina

Last edited by ninamarc; 07-17-2012 at 08:11 PM.

 
Old 07-17-2012, 09:35 PM   #4
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Re: Stages of Dementia

Please do not confuse medical status with words of comfort. Care givers want to reassure and say a patient is alright when in fact they mean the patient is well cared for. Mom's care giver always says Mom is good. Even on a bad day it is nothing more than her way of letting me know that Mom is being taken care of. Remember no one knows the hour that we leave this life. That is left to a higher power. If a medical professional tells you a time... they are guessing!

Love, deb

 
Old 07-18-2012, 08:06 PM   #5
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Re: Stages of Dementia

Noel, welcome to the board. Sorry that your grandfather has this horrible disease but glad you found us. Professionals are not immune from feelings! Anyone that deals with this disease is likely to have these feelings. It's so sad to watch our loved ones waste away. Just know we understand...We are all in the same boat with you

Love, deb

 
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