We have enough newbies asking the usual questions lately, it got me thinking about one of the most valuable resources I received from this marvelous group – Knowing what comes next.
After our diagnosis I went to the typical AD websites and read all the generic information about the stages of Alzheimer’s. Written in such generalities (for mostly parents & grandparents) they were not of much practical value to me. It was only after reading story after story from spouses venting and exasperating about what their life’s partner was doing that I began to understand. These many postings prepared me more than I knew.
On Memorial Day this year I passed a milestone, my wife first forgot that we are married. (The fact now comes and goes) Within the last couple of weeks my wife is now forgetting my name. (Although it comes and goes too) These are things that might have devastated me IF I had not been expecting them. Only because I knew that they are a typical part of AD I was prepared and I easily recognized them as ‘normal’. It was a TEMENDOUS help at the time they happened!
So I thought perhaps we could put together a list of the Alzheimer’s stages IN A MARRIAGE from ‘something is wrong’ to ‘placement’, Things that only a spouse would see as significant. A list that other spouses can use to anticipate and PREPARE for their journey through dementia.
Nowhere near complete, and in only general order;
Something is wrong . . . .
Inability to perform their marriage chores (money, trash, pet care, cooking) so you have to take over Transition from husband/Wife to "caregiver"
Doing stupid things – putting things in wrong place, closing doors windows
Need to tell lies to your spouse - Fiblets
Inability to drive
Cant remember being married
Cant remember your name
Inconsolable crying
Obsessive compulsive behaviors
Irrational anger and rage
Departure of marriage related family, friends and groups
Word loss to the point you cant understand what they want
Inability to perform personal care - dressing, bathing, toileting
Cant be left alone
. . . . Placement
Somewhere in here you have to get the emotional divorce / emotional widowhood to be able to survive but I guess it is up to the individual where to put it.
Also, the devastation caused in the earlier stages by the changes in your spouse.
Unable to tell time...first you deny to yourself, buy a digital watch, then realize ...it is no use, he cannot comprehend TIME. Trying to kill a rattle snake with a pair of pliers..(that was an eyeopener...that I had to watch him like a two year old. Dressing himself...and me realizing...he has got on my shirts. Changing from a kind polite person...to being rude to people he loves.
Disregard for your feelings, totally self-centered Poor personal hygiene Constant need to be with you, shadowing Anxiety, sundowning Inappropriate behavior in public Angry outbursts
We might scare the newbies so badly, they run for the hills. But I agree with m-man. When i first came here the "heads-up" on what could happen, helped me be better prepared and calmer.
Nikki. . were hallucinations a manifest of medications or inherent with AD? We had some hallucination issues, but were thought to be part of medication side effects. . I think I would add, fearful of being left alone . .fearful of going out in public. .Sundowning was a HUGE issue. .still is. .I could never grasp that one fully until I read about it. Would be interesting to start a list with how we as caregivers have changed over the span of time. . Just wondering if anyone else is dealing with vision issues. .Myopic. . tunnel vision. .depth perception inconsistencies. .Also the myoclonus. .muscle twitches and spasms.
The newbies need to remember that when you see one Alzheimer's patient you've seen one Alzheimer's patient. Each one follows their own path. Your loved one may not have all the symptoms mentioned. Usually by the time they develop a new one you have already read on here how others coped with the problem. So I say read and be ready for what ever comes your way but do not spend your time worrying about something that may not happen.
Bama that is very true!!! Many of our loved ones will not have a lot of these problems. I guess we were "lucky" in that we had them all in one way or another! lol
Sundown, the hallucinations were just part of the disease for Lynn. Though his worst ever was caused while taking Cipro. Many of us have had problems with vision as well.
Another thing I would add with Lynn is weight loss.....
True, what Bama says. Many of the things being listed here are the details, which may vary. I think that as m-mman started his list, the beginnings hewed closer to a general timeline of what a marriage partner might expect, and the details would fit in at different points depending on case.
I would definitely start with "Something is wrong..."
then loss of abilities/you the spouse having to take over tasks,
then empathy begins to disappear,
then we get to the various specific aspects and have to start adding in caregiving considerations.
On symptoms--while it is true that each AD patient varies, there is a "most common pattern" of symptoms that can be used as a guideline. It's described in the Reisberg Scale and is on the alz.org website as Stages of the Disease. I believe it is also posted at other sites on the Internet, in more detail. But as others have said, not every patient has all these symptoms, nor do they always occur in this order. For the newbies, if it helps you to know what MIGHT be coming, check this out. If you are the type of person who would be upset, don't.
Round up the usual questions. Foggy night with the plane leaving for Lisbon.
Can I ask whether you have seen any anger or rage? I don't recall you mentioning anything like that earlier and I'm asking because I'm suspicious the majority of men and women who get AD generally behave differently on this topic. I would also include abuse in this point about men and women.
Moving out was one. Not sleeping together anymore. Also firstly disinterest in sex although some men I hear are the opposite. And secondly the realization it may not be appropriate any more. No two consenting adults for one thing.
I see the disease as a 'brain rot'. Not every brain is destroyed at the same rate or in the same way hence Bama's comment "When you see one Alzheimer's patient you've seen one Alzheimer's patient". The different causes of dementia also can have very different symptoms.
Example: my wife still reads a clock perfectly, ("No, its not 8:50, it's 10 minutes to 9") but the day of the week is a daily mystery.
BUT, the more you know, the easier it is to be prepared for what MIGHT happen. Knowledge is an asset in this disease. Ignorance makes it very hard to catch up when changes happen (sometimes suddenly)
Some of the aspects I hoped to explore for the new folks are the many little effects of AD within a marriage. I have not had a parent/grandparent with dementia so I dont REALLY know how that relationship is affected. I DO expect the have to help my parents with daily tasks as a part of normal aging. Like everyone I have 'lied' to my parents for years. BUT I never expected the lying to become an integral part of my marriage.
Does anybody who has experience with both parent AD and spouse AD want share some comparisons?
I was reading back over these posts and my first inkling that something was wrong was 51/2 years ago. The first symptom was delusions or hallucinations. He walked in one morning and wanted to know what was going on after he went to bed. His story was I was having wild parties and had something going on with some kid who lived across the street. This has been a constant problem. He was not able to tolerate the meds and I have learned to roll with the punches. Now he cannot take care of any of his personal needs and needs my help with everything. Sometimes he eats good and then again will not eat. He is slowly losing weight and cannot remember anything or find his way around the house. But...this he remembers...I have boyfriends...LOL
sundown, i have never asked what stage bobby is in. i would guess 6 , he cannot dress, attend to any of his hygine or really nothing much. he does know everyone and can walk or shuffle around by himself. his work that he does when he is up is to be out in the yard picking up sticks. he mostly picks them up and then drops them in the next spot he stops. myoclonic jerks have been a hugh issue for him for about a year. we are now on a anti seizure med that controls them somewhat but at about 1/3 of the full dose because it causes hallucinations .depth perception has become an issue in the last 7-8 months, he constantly thinks there is something in his hand and tries to sit it down. his left hand is basiclly usely almost like a stroke but there has not been one from about one year into the dx. so now he finger food eats mostly and has cups with lids and straws that will not come out. he is down about 40 pds for the onset.(which i tend to find each one he loses). i am about tired of all the drugs the side effects seem almost worse then maybe what we would deal with without them. the dr wants us to start on a drug for the sundowning but the side effects list scares me to death!
Sundowning and restlessness were early in his disease. Inability to hold a job after many years of employment (didn't know what was wrong with him - always held a responsible job) I would add losing important items-car keys, credit cards, important papers, such as deeds, wills, etc, not just misplacing them, disorientation while driving and getting lost, Also if you travel by air I sign I missed was not being able to follow all the steps going through security (take off shoes, belt, change in pocket, stuff in bin, walk thru scanner and the collect all stuff without holding up the line). That was 2 years before diagnosis.
bama, you are an extremely attractive lady - that's why you have boyfriends! This must be so hard for you and I salute you for the good job you have done.
Donna, what drug is the Dr. suggesting for sundowning?
vickie, the dr gave me zyprexa, he said it would help with the sundowning and he had seen it help with other patients to get them to eat more. i don't know but i do know that bobby always had adhd, there were very few projects that ever got finished around here that was very true with his art work once it got to a point he could see what he wanted in it he would stop or get bored or something. I think and wish the dr would listen to me about the adhd , i think maybe some of the drugs they want us to use might not work for him.
phranque.. sometimes i think the darn suntan lotion would work just as well.!! sorry should have read Vickie's comment i just repeated her. maybe worth repeating!
In 2006 Seroquel was tried as a replacement for Thorazine for mood swings and behavior--all it did was make him sleep. Not for himthe Dr said. Earlier thius year sundowning got really bad and we tried Serouel. 200 mg. around 3-4 p.m. allows a relatively peaceful evening and he's usuallyin bed by 9:30-10.
Lots of options. Don't give up---and don't be afraid to try them.