As we write our comments, suggestions, and share our frustrations with medications, behavior, placement etc. I thought it would be helpful to have an idea as a point of reference where our spouses are in the Alzheimer's 7 stages. Of course, they overlap in these stages but a general idea would be of benefit.
Mine is somewhere in stage 6, losing speech, bathroom is hit & miss - tries to use it, sometimes successful, sometimes makes a terrible mess & due to wanting privacy, combative to help. Having difficulty with impulse control, some paranoia, mood stability, and behaviors, including aggression. I think his difficulty is as much psychological as it is the brain changes, as on some level he finds the changes distressing. The hitting began with the aphasia, frustration trying to communicate needs. He's had Anosognosia (not denial, but lack of insight, no knowledge of having anything wrong) the entire time, but now throws his hands up in frustration, and a few weeks ago said, "How did I get here?" during a period of incontinence. He's also recently lost the sense of personal space people keep, so gets too close to caretakers, which they find threatening - they say he's "in their face". Approach seems key to dealing with him, and smiles and sweetness seem to work, but he reacts badly to negative facial expressions. He is 66 years old, diagnosed 7 years ago, but could see it two years before, with one year trying to convince him to see a doctor and a year trying to get a diagnosis, so we are entering year 10. Recent brain CAT scan showed a lot of atrophy and white matter volume loss.
Mariposa, even though my husband is a what I consider stage 5 he too has trouble with finding the correct words to use and becomes very frustrated with himself and angry at me ( he views me as the enemy inspite of the fact that I provide all his caretaking with the best I know how).
We have always had behavioral problems with aggressive behavior expressed solely to me to the point of verbally saying he would kill me which was in the earlier stage (mild AD). His shrink took him off the Seroquel and replacing it with olanzapine about 12 weeks ago. He then recently stop the olanzapine and hell is breaking loose. I called his office Friday and all he did was up his anti-depressant. Like that going to help aggressive behavior...NOT I can only imagine how difficult stage 6 must be for you with their moods, behaviors and aggression. My heart goes out to you!
Thank you for your input as now I know more what to expect (these medical stages don't address their behavior issues, but seem to be more focused on memory. We should be so lucky if it was only a memory disease!
Mariposa, I think you know me! I have moved to Maine, to the Highlands in Topsham. Sold my house in RI a year after my husband died and spent a year downsizing before moving up here a year ago. I have gradually been getting attuned to the place, still involved with the island. My email is in my profile, so get in touch with me if you like and we can reminisce and maybe brainstorm about some of your problems. - Clare
Although DH has FTD, I still use the Alz stages to gauge where he is. He is clearly in early stage 7 now. Becoming both bowel/urine incontinent, losing a lot of his speech, difficulty finding bathroom, needs a lot of help dressing, aggressive behaviors, tries to wander, etc. We've come a long way in 5 years, particularly me. I had difficulty admitting to myself that he was entering stage 6 when it happened. Now, I can actually say he's in early stage 7 without crying.
Charlotte, I understand....I too don't dwell on the stages because of the overlapping. Yes, mine as well is in moderate. Somedays it's a more severe/ moderate others a mild/moderate. It's dumbfounding how one day can be so different then the next, but one thing for sure, it's always a rollercoaster ride of the unexpected.
LFL, Sweet lady you have had your more than your share of aggressive behaviors with DH. I admire your stamina and strength dealing with all the problems you have had and the new ones you are continuing to encounter. I always thought that the bowel incontinence would be my line in the sand with the accompanying aggressive behavior. I am not dealing with the incontinence, as yet, but the continual behavior of living in sometimes fear of what he may do to me is enough. My thoughts and my prayers are with you.
Dado I believe is well into stage 7. How I dread the rest of this ride. Though, in some ways, I can see why the earlier phases are the hardest. Trying to accept it is really happening, astounded at the changed behaviors, and sometimes even mad because you find it hard to believe.
Now, I see the knowledge in all the ones that have gone ahead of us. He has no speech anymore, I miss just those few words. He does not have the getting up and down and picking at things, I miss seeing him move instead of slumped over in his chair.
But the main thing is, I just miss him saying my name, though, when I go to give him a kiss, he still seems to remember to give me a small kiss. Most of the time he just sits there with his eyes closed, and opens his mouth like a baby bird, waiting to be fed.
Lately I try not to post too much because it is all so deeply sad and hard, and I don't want so many of you to be scared.
As I read your post my heart is breaking for your loss. I miss hearing from you and please continue to post. Coco, don't think that we are scared, but are here for you with care and not scare. (Yikes, didn't mean to be poetic!)
Your experience (as well as so many others who are dealing with more advancement) is of great benefit. Yes, each and every stage is just as difficult however, difficult in it's own way.
Please take care of yourself as I know you do Dado. Your caretaking love and gentle spirit are so very evident though each and every post you share. Many best wishes to you!
My DH is stage 5 lapping into 6 quite a bit. Last nite he peed in waste can and on floor of bathroom. And he has wet his pants on a couple of occasions, biut overall controlling it. He eats everything he gets his hands on, resperidone responsible I think. He has occ outbursts but generally very nice and sweet, and appreciative. He does have to have verbal prompts for shaving and showering, refuses help. He never c/o s when I leave him with a caregiver. As long as I get out pretty freq, I can hang in with things like this. Of course I know things will change soon.
I think my DH is getting to the end of stage 7. He has been totally in bed since Oct 14th. Until today he has opened his eyes a little at mealtime and ate pretty much what I put in his mouth. This morning he was awake when I started feeding him but then he just shut down. Later in the day I got 2 Ensure type drinks and a few ounces of water into him but nothing like he has been eating. I have a hospice aide every morning to bathe him in the bed and change the sheets and pads. The rest of the day I muddle through . DD is here at night to help. Changing a diaper on a grown man isn't easy.
Like Ky caregiver if I can get out a couple times a week I can hang in there.
Similar to Ky caregiver, my husband is straddling 5 and 6, I think, but still no incontinence. As Charlotte says, I prefer the mild, moderate, etc. categorizing. The neurologist recently downgraded my DH from mild to moderate. He has trouble finding words for just about anything and gets frustrated easily. He is also very emotional, frequently breaking down and asking 'why did this happen to me'. I think what is hardest is that he has no motivation or desire to do anything - he would stay in bed 20 out of 24 hours if I let him - if there is nothing scheduled that I am taking him to, he just sits and stares into space, occasionally picking up a book or magazine for a brief period, but I don't think there is any comprehension. If there are people around, he will come into the room but says next to nothing, just sits and listens........I think trying to follow conversations must be terribly confusing.
I was reading all of the posts of those who are guessing what stage their LO is in. So many memories come zooming back into my mind. Just when ya thought you had their situation figured out, something else changes. It's a never ending changing ride....just downhill, which indicates it will just increase in the speed things happen. My heart goes out to each of you, as I have lived in that despair. It was a long lasting ride. At the very end, my guy actually fell, (which I had protected him from by always being at his side.) He broke his hip bone, was hospitalized, and passed within the week. This is an important event to note to all of you. Over 32 years, I had an accidental death policy on our mortgage, which was not costly. Even with not much left on our mortgage, the insurance was quick to pay it off. After the accident, and passing on within a month, there wasn't much discussion, even with his very documented condition. Guess I'm just encouraging anyone who can obtain this insurance to do so. It saved my home. I honestly feel that he was going to pass on within weeks. A tender mercy for me. My heart goes out to each of you in this difficult and emotional time. You just never can tell what the next day will bring. Just needed to share this. Hugs to all.
I am still one of the lucky ones(if there is any in this disease) my Paul is like Charlotte said moderate -he has trouble showering and dressing,and does nothing but feed his critters and watch tv. He likes to go out to eat and enjoys being with people,even though I am always a wreck wondering what he might say or do... He is calm and even tempered(thank goodness one of us is) While this all sounds like I have it easy -IT IS STILL HELL -to be living this way. So many of you are dealing with so much worse and I feel bad to complain but as you all know--we miss our LO-and our life before ALZ..............
I always find it hard to gauge what stage my DH is in. I guess I would have to say moderate, although still high functioning. He's independent in his showering, shaving, dressing, etc., but shaves, brushes his teeth and eats very quickly, resulting in a so-so shaving job and his oral hygiene is beginning to suffer a bit. Last year at this time he was starting to show signs of urinary and bowel incontinence, but both have gone away and he gets to the toilet on time with no problem. He has forgotten quite a bit of his personal history and at times he almost seems like someone who is from another planet and is trying to understand the ways of this earth. I know he has a lot of underlying anxiety because he always wants to know when we're going to eat, go to bed, etc. and asks about that constantly. He's pretty even tempered, but occasionally a bit ornery, like not wanting to return his name tag at the day program. Every day is a guessing game around here.
My husband is well into stage 6. Lately he has stopped talking much at all. He likes to be in his bed at the ALF but we can coax him up to go eat. Sometimes he naps and sometimes he just lays there with his eyes closed. He is incontinent now and others have to shave & bathe him. Half the time we even have to feed him or he will lose interest and just walk away. He is quite content though and that is a blessing. I can never tell what he is thinking and, truthfully, I don't want to think too much about that. I hope he is not suffering and do all I can to make him smile and to make our time together sweet. Sometimes lately he has not known who I am. Although I accept what is happening, it is so deeply sad to see him fade away like this. I make sure I tell him how much I love him and how important he is to our family. I don't know if he understands what I am saying but I don't want to leave anything unsaid.
My heart goes out to every single one of you. Clare (Brigull), I am only recent on this board, but have lurked for years, so it must be another you are thinking of. Lulibird, I too became the enemy the three years I tried to help him stay at home. He just hated me then, having to be the one to say no to everything - woodstove, driving car, motorcycle. He never used guns in his life but inherited some and during one particular period got paranoid and was going to shoot the neighbor's dog thinking it was a mad dog. I realized he could shoot me or his brother coming to the door, and had a friend distract me to remove the guns. I got weeks of hatred and what his constitutional rights were, and then discovered a hoard of heavy objects, including an axe, after he eventually threatened his brother with a hachet, and about the same time attacked me. This is a man that never raised his voice to me in 25 years. A week before the hachet incident, he had attacked me and I had to lock myself i my car. His brother, and ex police officer had him committed to a geri-psych unit, where they would only release him to full time care, and that was how we got to nursing homes. His first one was quite a distance and I was finally able to get him located at one nearby where I live. He did fine there with medication working for 3 years until this recent progression, aggression and eviction, hospitialization, new care facility that lasted 3 days before recommitted to geri-psych. What a stressful three months. Dr. has told me unless he is stable, no facility will take him. And I work 60 hrs a week this time of year, so life has been completely unmanageable for over 3 months and my own income is threatened. New drugs are causing new changes. He sits with his eyes closed a lot. He did this when he was on depakote before. Somehow all the reading I did early on in his disease did not prepare me for any of this. I just don't want him to suffer. I think I was in my own denial of how bad things were and tried to err on the side of freedom over safety when the the choices came up, and also tried to honor his desire to be as conscious as possible for as long as possible in regard to drugs. Now I'm at a point where whatever combination they can find that makes him manageable for care takers and keeps him calm will be fine, but its sad losing him to the medication. Its hard to believe that just in July, we were taking daily walks around a pond in an ideal setting enjoying nature at his former care facility, with him happily working on colorful drawings each day and drumming - he was an artist and professional drummer/percussionist. In the midst of all this chaos, the second home we had was robbed. It was where he wanted to be and I helped him stay there commuting for over 3 years after diagnosis. We were planning to retire there when the diagnosis came, and I had to keep my business and income once we knew that. Each time a crisis propelled me out of my denial of how bad things really were, but by then we were ready (or perhaps beyond ready) for the next step. I hadn't wanted to move things in the house that was robbed - I wanted to keep it exactly as he had it and hoped someday he could return there and die, but that was ruined by the robbers as well as my sense of safety there. He loved his solitude in nature and these nursing facilities offer nothing that suits his personality, or what is left of it. Lately, it is all his disease, all the time. Yesterday I could not make him smile at all. And the grief - I had a terrible time when I was holding it in, but now I let it out and get through each bout of it. Like riding a wave, that puts me under when I least expect.
I agree with your comment about the grief; " like riding a wave that puts me under when I least expect it". All we can do is go through the pain, feel the emotions, and hopefully find some peace as each episode comes to an end.
Mariposa, my heart aches for you. I have just placed my DH in NH last week. It was so hard to do that, but I could not care for him physically - he is a large man and I'm small. He is now bedfast, pureed food, can't even turn over. Mumbles, but can't speak. It's so difficult to see them in the various stages of this horrible disease.
You have been through so much and I pray things will get better and the right combination of meds can be found. Many hugs to you today.
My Herb is hanging in Stage 5. In general, he's very congenial. I have to prompt him to bathe, brush his teeth, change his clothes, etc. He wouldn't eat if I didn't fix something for him. He's very content to sit in front of the tv. For a while he was having trouble with his words but is back to doing ok all the sudden. He went through incontinence when he was on the Aricept and Namenda but returned to normal after being off the drugs for about 6 months. He has recently had a couple bouts of bowel incontinence and I have to be very careful how I feed him and when he leaves the house after eating. He takes Celexa and Trazadone and blood pressure meds and that's it. He was aggressive in the early stages until we got his meds straightened out and it's been mostly easy since then. We've been into this for at least 10 years - probably 4 years where his judgement was very bad and I didn't notice so much because I was working and it's been a slow progression ever since. His younger sister has already passed from this disease.
I think my DH is at stage 4 or 5 - I have trouble figuring it out since his behaviour changes so much. He is very forgetful and repetitive and is starting to get withdrawn. Can't handle conversations that have more than himself and one other person, needs cueing as far as bathing, teeth, medication and dressing.
Coco please don't hesitate to post. These discussions are for us all. We all wrestle with fear and you posting or not won't really change that - I think we all benefit from everyone's experiences.
thank you ring. I know my experience is no worse than anyone else's, I just sometimes get so over the top in pain, and then to describe what Dado is going through is so damn intense. So very fast, from stage 4 exactly three years ago December, to full on stage 7 now. The fear, for me, is how just how will I be able to witness the end? Anyway this could veer off subject, so I will post elsewhere. Hugs to you all.
I haven't been posting much either, lately but for different reasons. Up until this week, we seemed to be on a plateau, where every day was basically the same. Hubby is somewhere in stage 5 or 6, depending on the day, but he is drifting into stage 6 and this week we seem to have more of a downward slope. I had a doctor's appointment on Wednesday this week, and left early because of the snowstorm. A neighbor stayed with him until my "every other Wednesday" care giver could come in. DH didn't even ask where I had gone, or what I was doing. That evening, and last evening, he either paced the floor as he tried to remember why he got out of his chair, or he sat in his chair like a zombie. He zoned out a couple of times at breakfast this morning. I have started to modify meals so that he doesn't need to cut his food. He hasn't said anything, but its obvious to me that he is having problems, and is too proud to ask me to cut up his meat for him, although I have been taking it off the bone. Now we have stir fries, stews and soft meats that don't really require a knife. He doesn't generally need cuing for bathing, and since we don' t go out much, I let him wear whatever he wants. He is urinary incontinent and he is sensitive to his "leaks" and I have been helping him with his meds for a long time. I hate this f**king disease! But then I turn around and look at everyone who has it so much worse...
bdq, yes each downward turn is difficult for us and them. What I do is cut up DH's food into bite size pieces before I serve it to him, so he doesn't need a knife. Now he just thinks that's the way the food is supposed to be.
I guess I have been just trying to ignore the obvious, and pretend things were still okay, but yesterday morning instead of having cereal we had breakfast sandwiches (like those at the Golden Arches), and DH couldn't deal with his, so I ended up cutting it all up into bite size pieces for him. I woke up this morning just thinking that I don't know if I have the strength or the energy to deal with this anymore!
I thought, "things aren't too bad. I can manage this, despite all the protests from my doctor and children. Then, the night before last, I was awakened at 2 am with him standing at the bedroom door, hollering, asking who was going to take him home? I have heard him ask this question before and understand that he believes he belongs in his childhood home. But he was adamant that night that he needed to go home and no amount of assurance would help. When I tried to tell him he is home, he was a little belligerent, telling me I was lying. I finally got him to come to bed but in the morning found him at the telephone, calling someone; I do not know who. I found a note with a name and number that he wrote down that is not at all familiar. When I asked him who he was trying to call, he said he was trying to call me but there was no answer. Of course he was calling our home phone number! He did not know where the bedroom was, nor the bathroom, for the whole day.
We talked a lot that day. He was as scared as I was. He asked why this happened to us and what can be done about it.
There is much that has been going on. I have only touched on just one thing. But it scared me enough to begin looking at memory care facilities. There are a lot of assisted living places but very few memory care. He cannot take care of himself at all in an apartment setting. I'm frightened out of my wits.
Please contact your husband's doctor via fax, email or phone immediately. You can not reason with you spouse as he is beyond this point. Perhaps he has a urinary tract infection (UTI) or he needs a pharmaceutical adjustment in his medications? Please do this....placement is a solution however, I would first try these other opinions and rely on placement as your last option.
I wish you the best. Please get professional help immediately not only for your spouse but yourself!
Bev when they go off on a limb out of the blue sometimes as lullie has mentioned they have an infection or not well. a cold flu sinus or uti can make them go bonkers too. I would also get him a checkup just to make sure something isn't going on to rule out first. dehydration as we well know can cause electrolyte imbalances as well that can confuse them thoroughly. we know they don't usually drink as much fluid as they need. hope you get some answers. divvi