My H is starting to speak a lot differently. It is hard to describe but I will try! Today I came home from church and he was trying to tell me that he wanted to move! He said it just like a toddler first learning how to put sentences together, very babyish and staccato like. He did this for several minutes and then he turned around as he was going outside and said "thank you for listening!" LOL My question is there a particular sign to look for when they get to the point where they can't speak at all because it seems to me that he is definitely regressing in that area. I would be interested to know what you all think and it feels like going into another phase towards the last stage.
Deb42657 My DH is doing the same thing. But he started using words like "porch tents" for umbrellas a few years ago. Now he has trouble getting words out. He knows the word but cannot pronounce it. But he also started putting clothes on inside out and backwards on more of a daily basis. So I feel he is in stage 6a to 6b. It seems like he progressed a lot in last 6 months. I think half the time he looks at me he is trying to decide who I am. I would like to know the answer to your question also.
I hear you guys and have the same thing here going on. He not only doesn't know the dogs name he doesn't know that it's called a dog. The same for many other items or starts talking about something that I just can figure out. Usually there's a word that gives me a hint of what he's after.
Yesterday he poked his head in my bedroom first thing in the morning and asked if we were going to church? We have never gone to church but he was raised catholic and went to catholic school, alter boy etc, but stopped going when he became an adult.
What do I feel like going from one phase to the next one?....boy good question. I feel really bad for him that he has to go through this disease and I hope it progresses quickly for his sake but weird enough for me (right or wrong) the more he goes downhill it means the sooner he will be placed and I can get on with my life....there I said it.
He is 78 and has lived a good life. He has lived all over the world, living the life he wanted. I will not mourn his death but will celebrate his life. I wish everyone got to live the life he did.
DW suffers from Aphasia and Apraxia She can no longer speak or comprehend what is being said to her. (Aphasia) She also can not carry out the simplest task, open a door, turn on/off a wall light switch, I have to cut her food and remind her to chew, etc.
A little venting Yesterday DW forgot to close the refrigerator freezer door .... I was unaware of the fact that she even ventured into the fridge until I heard drip, drip as the ice cube maker tray leaked melting ice cubes. You can't imagine how much help DW was trying to help... She dropped and the containers broke with three pints of ice cream, and a quart container of homemade chicken soup and that was just from the freezer side... Don't ask about the bottles of salad dressing or soy sauce .....I just kept saying temper...temper and then I took one of her Lorazapam tabs.
Amber, there are more of us than you that want to see them progress fast, especially after they get to a certain point. Fast for them and for us to be able to go on with life.
Thank you Marty for the website, Aphasia is what it is and there is another one that they said where they will pretend to know what you said to them and nod but they really didn't understand a word. Also the apathy is terrible! Charlotte, I don't know if I read it here or somewhere else but it said that the further along they are the faster it goes. I believe and hope that is true because I want it to be over with so I can get on with my life too Amber, I don't think that is an unreasonable thing for us to want.
Amber, I feel the same way you do, even though DH is reasonably compliant and never violent. AD is fatal, and the longer it drags on the harder it is for me to live. Last week was a better than normal week for DH, he was doing helpful things that he hasn't done in months! And how did I react? Well, lets just say I feel guilty now for what was running through my head last week as he seemed to be improved - thoughts like "don't you realize that the more often you feel better, the longer this is going to take, and the harder it is on me?". Thankfully he is back to his "normal" this week and I can cope with that.
And deb42657, I think the signs you are seeing occur at different times for different AD sufferers. That was one of the first symptoms of my DH's disease - he couldn't find words, couldn't complete a sentence, spoke haltingly. I think in his case its because when he was a teenager he had encephalitis, and his speech was affected then. He managed through most of his life to speak "normally" because he was able to consciously compensate for his speech problems. AD has taken away his ability to compensate.
bqd, I hate it when he is having good days! (that sounds weird, but true) If he has bad days I can "see" results instead of stagnation. No one would ever believe us if we told them or they went through the same thing. I have a "somewhat" friend/acquaintance that doesn't even believe he is sick. After all this time she still has her head in the sand but I think it is because she is afraid that her husband might have "it" but doesn't want to admit it. Anyway she thinks "it is just awful" that I would want to get this all over with so that I can move on with my life, I really hope she never finds out what it is like first hand.
bonnie and deb - when we moved up to our cabin 10 years ago I knew there was something wrong and had a pretty good idea that it was dementia. I never let on to my neighbours or friends what was happening to him just let him live as normal of life as he was able.
It is only this spring where I have come out and said that he has alzheimers to them. Well almost to a person they say "he doesn't seem that bad" or "I can't see it you must be mistaken"
I know you guys know how that gets our blood boiling with all we have gone and are going to go through with our spouses then to hear someone that has very little contact with them say that. The only neighbour that said we know that he is fading is the one where they are both doctors and then asked "how are you doing".
Not one of them has said if you need a hand with anything give me a call....and they're all retired so not like they have a go to work or raise a family. Time and time again we read about this same response.
Amber, we are getting off topic here a bit, but I have discovered that you have to actively ask for assistance in order to get any - no one asks if you need a hand. I think they just assume you will ask if you need it. We live in a small rural community too, and I know that word has gotten around the village that my DH has AD. And I've discovered a couple of neighbors that are willing to help out looking after DH when I need to get to Dr's appts etc and it isn't my respite day - and some of these neighbors are NOT who I would have expected to help, but when asked, did the sitting gracefully. And of course, the good friend I thought would help is AWOL!
Amber, I don't but...I would love to tell the people that don't believe that he is "that bad" or "he doesn't look sick to me" to take him home with them for one week and then tell me they don't think he is sick. It does get my blood boiling and I think the biggest reason is because it makes me look like a liar in their eyes. I told one of them "don't you think I would know my husband a little more than you do?" grrrrrrrr! Anyway, bqd, I am really glad that you are getting some help and I can relate to the fact that you are surprised at who it is that actually comes to the rescue.
These comments have really hit home, every one! You are all ME! I have these same thoughts about the progression of this "thing", about other people's reaction to his behavior (he doesn't seem so bad!). Compared to many, I suppose he isn't so bad - yet - but I'd like to throttle those folks anyway! I've never made a secret of his disease, but I've pulled back a little when someone asks how he's doing. Just kind of say something like "oh, he's holding steady right now" or "he's doing well under the circumstances". I too would like a few years of peace after this AD - I'll be 72 (yikes!) in four months. My concern is that I'm going to run out of time myself & won't have a chance to "move on" ! But, that's projecting too far into the future - live in the moment, Mim!! :)
It's so strange to read, what I am thinking and living, it's hard to believe there is someone else like my dh. My dh also has the problem talking. Sometimes, like today his speech is good. I can understand when he uses the wrong word. Some days I listen for something that tells me what he is talking about. Do any of your lo's not know what foods are? He can't call anything, except banana by name. Sometimes he will say, may I ask what I am eating? I do try to tell him when I give it to him. I get great compliments and you should make this again. It's all new to him. He orders what I order when we eat out. If he could just forget the anger, I've noticed he is starting to get louder with his anger, he always says he's sorry later. Usually it's about him not driving. Bonnie
Yep totally understand what you are going through. Been there and am still there with some of it. Keeps telling me I never feed him. DRIVING don't get us started!!!
You wrote about anger....be very careful here....I'm dealing with anger issues too. It has escalated to physical attacks. Please make sure you have an escape plan. Have stuff packed and keep it in the car. When you go to bed at night have your purse with keys where you can get at it quickly as you head out the door...cell phone of course. You can write that right now he would never go that far, so did I until the night it happen. I'm not meaning to scare you it just is what this disease is and know if he was in control he would never do anything like that.
Know we are here with open arms and big ears and a strong shoulder to rest you head for a bit.
Yesterday my DH had difficulty forming any meaningful sentences. He asked me in the middle of the afternoon if I wanted an apple or an orange, I said no, do you want one? And he couldn't find the words to tell me that what he really wanted was some grapes. He asked me three times what we were having for dinner, even though he had seen the steaks thawing on the counter. If I give him a choice, it takes forever for his brain to process, so I have to learn to stop giving him choices. He doesn't get angry, but his inability to articulate his wants does leave him very frustrated. And I try to stay calm and just wait for him to say what he wants, or help him along by making suggestions, and wait until he agrees to something. Yesterday I just felt like screaming, I haven't been sleeping well, and I am getting tired of being nice to him all the time - there wasn't anything specific, but just an accumulation of things that made me want to lash out. But I managed to hold it together somehow, and then come to this site and read the threads, and realize that so far I have had it pretty easy.
Thanks for being here. I have considered what my escape plan would be. I do keep my purse where I can grab it when heading for the car. Hadn't thought about having some clothes packed and in the car. Normally he would do anything he could for me, then out of the blue comes the anger. He can be sweet for 5or 10 minutes, then angry 5 or 10. He did that 2 days straight once, still does but not for that long, or he may keep the anger up for a couple of days. I still go to my stitching meetings, and other activities while I can. As for food he can't call anything by name, he just knows he likes it when he eats it. I have gotten to where I make his plate up and he's always happy to eat it. Sometimes if I don't tell him what it is, he will say, May I ask what I am eating? I have found it's one less frustration he has to deal with. I am getting better about raising my voice at him, I still do, just not as often, mostly I just don't say anything. Both of you have a good day tomorrow. It's one day at a time now. Bonnie
What I found is the further along he is the quicker changes are happening. He is now at stage 5 and every couple of days I can tell he has lost another skill plus I think the longer we are caregiving the more we just adjust to the changes without really giving it much thought.
My DH has also suffered with speech and language problems for almost two years. Stammering, stuttering unable to find a word, using the wrong word, unable to complete a thought all make it extremely difficult and frustrating for him to communicate. It's like playing an awful game of charades. It is heart wrenching to watch. I feel like my stomach sinks as he tries to talk. Add to that the constant repetition of questions and his general confusion ...this disease is the worst NIGHTMARE! Yes, it also gets worse and I fear for the time we will no longer communicate.
His frustration had started to end in raging anger or otherwise difficult behavior. I spoke to neurologist as it was getting unmanageable. He has been taking seroquel 25 mg for over a month now and his raging anger has stopped. If He is mad, it passes much more quickly.. Hope this continues or a long while. I recommend speaking o your Dr about medication for anger issues.
Amber and Lorrie He's really mad at me today. He thinks I am hiding his car. This morning he wanted me to take him to pick it up at the body shop. Tomorrow I take him to driver control, hopefully they will take his lic., then his car will come home. He says he is going to leave me as soon as he figures out how. Amber, I too can see little changes quite often, thought it was in my mind. His language chart the Dr. Gave us showed 0 in his testing on language. He doesn't do the repeating that is so common. I need to check the stages again and guess about where he is. He was in 4 and 5. With the beginning of incontence which I think is in 6. Haven't looked at that in awhile. The hard part is he sometimes is so normal. I will check with his Dr.,for seroquel or something. I can tell his anger is escalating. He called me on my cell phone today, his voice was bone chilling, but he has cooled a little now. He still knows 2 phone #. Our land line and my cell. Strange the things they retain. Hang in there we will make it through this. Bonnie
Bonnie My DH started to lose his language abilities early, but I always figured this was due in part to previous problems in that area (does AD attack a weak part first, or could he just no longer compensate for a weakness in that area?) Anyway, after having major problems with his words on Sunday, he was better yesterday and today, or maybe I am just better rested today so it isn't bothering me so much to try and wait and figure out what he wants to say. Our LO's do sometimes appear to be better than at other times, and I think part of it might be fatigue on their part - we had company late last week and that may have over stressed him. Just starting to deal with the incontinence issue. He is also starting to get antsy in the late afternoon - his GP gave me some lorazopam to deal with that but I haven't given him any yet to date - if his sundowning gets to the point I can't calm him then I will resort to the pharma approach.
Bqd That was the first thing my dh and I noticed, he couldn't pull out the word he wanted. His Dr. Would just tell him it was because he was getting older. The Dr. Finally listened when I told him my dh didn't know who Ben Laden was, and we got the first dx of vascular, now 2 years later the alz. Dx. I think.the word problem is worse with fatigue and from being around other people, even though they know them, it's not their comfort zone.
Seems like our spouses have similar issues. My DH too was always weak in written and spoken language .
Then he started to have more difficulty writing and spelling. Of course, as I posted the speech deteriorated.
Now he could not even sign his name on an anniversary card his friend took him to buy or me. He drew a heart and said that was his signature(could not write my name either)
Off topic but since you mentioned... Today for the first time ever, my DH came running in from the yard saying "I started to tinkle. " (so upsetting for me not him ) and he got to the bathroom a little late. Didn't make a big deal of it. He said it just started to come and expressed surprise.
Yes, that is how it starts. Mine wears pull ups, he calls them diapers, they are like jockeys, if you haven't looked for them yet. I read where the brain doesn't send the signal that they need to go. My dh can still sign his name, not very well. He has trouble writing cards, he also draws a heart, then it's a big problem getting it in an envelope, he still writes check, and sends the bills out. Can't balance check book. Takes him a long time, but he hasn't given up. Always asking how to spell, or what one of his kids name is. We do seem to be at the same stage. Have a good night. Bonnie
It seems a bunch of us that are posting are all in the same stage with our spouses, end 4, 5 & beginning 6, all mixed in together. Haven't had to deal with incontinence yet but it is sure to come. I pretty sure that is my line in the sand, personal care, the changing and cleaning him...have done it for years a work and I am not willing to do to it at home 24/7.
Amber I'm thinking the same way. I don't think I could do it without up chucking myself. We do seem to be at the same port in this storm, hopefully we can guide each other thru it. Well they just said on TV, the grade For AR nursing homes is a D, and OK is an F. That just really thrills me. I live in AR and my children live in OK. I'll sign off for now, have to get supper, will be back later tonight. Bonnie
We're at about the same stage you're talking about. DH has had several accidents when he doesn't make it to the bathroom in time. He wears disposable underwear all the time, which is good. However, quite a few of the recent accidents have been bowel movements, and they tend to be very runny and smelly. They've all happened in the retirement community where we live - usually in our apartment, but a couple of times in a public restroom. I've cleaned them up so far, but they're getting more frequent (twice last week). I thought this was my line in the sand, and I've been thinking about placement, but actually he's in pretty good condition. We'll see. I don't know how long or how often I can handle it.
Bonnie, Off topic, my DH also wears pull ups, they are disposable underwear, and so far he is looking after changing them himself. Once he can't, I don't know, that might be my line in the sand too. As far as language is concerned, he can sometimes write something down on the shopping list, and it is legible and spelled correctly, but most often its misspelled, or the hand writing is shaky or illegible. He can still sign his name but its like watching someone who has just learned to write, complete with the tongue sticking out of the side of his mouth. And it takes forever! And yes I think most if not all of us who have posted on this thread are at the same stage with our spouses - end 4, 5 and beginning 6 all mixed together.
Have any of your dh/dw been diagnosed with more than just alz? Mine also has vascular dementia. It's strange (I think) how I can fill in his missing words so easily, it is a challenge at times though. Like when he said fireplace for clock, I did finally figure it out. Even he notices his bad handwriting has gotten worse. I don't like hearing runny and public restrooms, he has that problem but has been able to handle it. I have noticed when he over eats, that is when it happens. I feel for you. Have any of you started looking at nh's? I feel he is far from it, but if he were to get violent or something, maybe I should be prepared? Bonnie
bubblyghtnin, I would recommend you start looking at care facilities sooner rather than later. I started looking one year before I placed my husband. I was so emotionally distraught after my first couple of tour visits, that I just couldn't think straight. After visiting a few ALFs over the year, it wasnt so traumatic for me and I was able to think clearly, make comparisons and come up with a 'short list' and put our names on their waiting lists. I never told my DH what I was doing, that would have accomplished nothing. But I had a plan and was ready when the time came, which was a huge weight off my shoulders. Good luck.
Bonnie, my H has Alzheimer's and Lewy-Body dementia. He has gotten violent and according to what I am told well again but I can't afford a NH, maybe it is New Mexico or something but I have yet to push the right buttons and get some answers but I well keep trying. In the meantime all I can do is take precautions and when he does get violent dial 911. I can't even save the 911 on my cell phone, the phone says it is a restricted call and won't save it. Go figure! Must be the aliens! I live in Roswell after all(dooo do dooo do dooo do dooo do) LOL!
The first thing to go with Lloyd was his speech. I can relate to the "porch tent" thing. Mim, I got sick of people asking if he was any better. I started telling them that he has good days and bad days, he is not going to get better, and that he will die from this. It is easy for other people to be optimistic when they are not doing the 24/7 with them. I never looked at facilities. My youngest daughter moved back home so I could quit work and take care of Lloyd. I will never regret it. It gave me all the time possible to be with him before it was too late. Lloyd could get violent, too. He was very strong...maybe even stronger than he was before. I would just act mad and tell him if he wanted to be mean, I could be mean, too. If he pushed, I pushed back with one hand and was ready to catch him with the other. I never called the police. I just didn't want them dipping in our lives. He was not a criminal...he was very sick and I knew their treatment of him would be a nightmare for him. I can't imagine having this disease and being handcuffed or physically restrained. When Lloyd was dxd, I promised him I would take care of him and be with him to the very end. We went through it all - the poopy pants, wet pants, having to be fed, taking him in the shower with me, dressing him, undressing him, taking out his dentures...everything. There were plenty of times I thought perhaps I was living in hell on earth. BUT I loved him and I would do it all over again. Our spouses need our love and protection more than anything else.
In the initial post you asked, " Is there a particular sign to look for when they get to the point where they can't speak...?" My husband is using word substitutes when he forget the correct name of a word ie. "porch tent" for umbrella...."that yellow fruit" for banana etc. Because he is lacking some verbal skills and is aware so he withdraws. He will not engage in conversation with me however, I have noticed that he will strike up conversations with strangers!
Comprehension- Also, because he is hearing is impaired and has been for years, I have mistaken hearing problem for a comprehension problem. If I rephrase a sentence using different words he nods his head in agreement. However, I can't make the assumption about what he's understanding.
Amber- When I read your posts I feel that I have written them. Your husband is approx. the same as mine (we have a large age difference as well). My husband has led an full-enriched life which many people are not privileged. I have not been as fortunate as he as I am tied down with heavy responsibilities of caretaking a demented spouse. Yes, the bad days give me hope that the our journey is winding down. Then when a good day comes I return to my dark tunnel looking for the light to shine which will allow me the freedom to escape the journey. Such a long distance road we travel. Hang in there girl!
Linda - I so respect you for being able to keep your hubby at home for the whole time. For some of us that isn't in the cards. We are looking after our spouse on our own without the help from family or friends. There will come a time when we are so worn down emotionally, mentally, physically and spiritually that we just can't do it anymore. Then is the time for placement.
I have his name at the NH that I want him to go to and when it is time the nurse will present him to a panel to get him admitted. Very short wait list 2 people on it so I won't have to wait long for him to placed.
Lulie - When I looked at his family they are all strong and healthy living up to 100. I expected that I would find him one day at 96 out in the woods cutting trees gone from a massive heart attack. No one in his family has alz and now he and his sister, next in line, have it. Go figure eh! One day we will get our life back....now if we can just figure what they are saying today....to stay on topic.
My dh is also older than me by 9 years, he's going on 83. No one in his family has had it,his mother died at 89 stepping out of the bathtub had a heart attack. So far the pull ups are working well, the only thing I've had to do is wash the bathroom rug. I've never washed a rug so often. Today was happy, rant, happy. Not bad, Let's all hope the sun shines on us tomorrow. Bonnie
Bonnie, My DH is older than me by 12 years, he turned 73 this year. He was adopted as a baby so we have no family history on him. Today was a very busy day and I spent most of it in the car driving us from appointment to appointment. DH managed to speak in sentences today, but then he probably had 5 naps in all, since he sleeps in the car when I am driving, and as soon as we got home (before supper) he went to bed for an hour. At least one of us was well rested :-) Yes, sunshine and happiness in the forecast for tomorrow.
Amber, YUP, my was never sick a day in his life. Horse healthy & I wouldn't ever have considered going out with him if he was so physically fit because of the 14 yrs age difference. I do hope one day we can get our lives back soon. Staying on topic....talks in complete sentences, but I am guessing he's a solid stage 5. His physical body is now catching up (problems walking ect) with his memory.
bjblghtnin, I do hope the sunshines on all of us....it seems to be a particularly troublesome week for many of us here.
bqb, Aw, We all understand that driving to appts. gig. I have never seen so many doctors in one month for him....PCP, Neuro, Pscho, Cardio, eye doctor, skin care, PT and opps almost forgot the dentist!
Linda, I so admire your wonderful attitude about taking care of your husband till the end - I'm not sure I'll ever be able to handle that, but I guess I won't know until the time comes. D. is in great physical health, in spite of a heart attack almost 20 years ago. It saves us a lot of extra money on meds, for which I'm very thankful, and he also has longevity genes on his side - mother lived to 92, her sisters, 94 & 101 & her brother, 94! Not sure how I feel about that!!! Sorry, I guess I'm off subject. His speech seems to be okay, he shuffles his feet a little when he walks & seems ever so slightly bent.
The walk I have read shows up first with vascular dementia. My dh was talking good today, he first was depressed, got the revoke letter, then was in good humor the rest os the day. Even worried about me, my back was killing me. I was just happy to carry on a conversation with him. Do they all have language come and go? I still have to guess something's. Like would I get some more of those sticks. After a few more of his trying to describe, I came up with pretzels. Sometimes it's like pulling teeth. Mine was healthy, never sick, until we were married in 2000. He had surgery every year including 2000, until 2007. I was already suspecting dementia by 2007. The speech and walking were a big problem. How about some sunshine tomorrow. Bonnie
I will send you all the sunshine you ladies want! However, I do request a little rain please.
Conversation---I miss conversing with him. He never talks with me unless it's absolutely necessary "when's dinners" "where's the dog" The house is so quite that the silent is deafing. Maybe tonight a "telemarketer" will call? Only joking
lullie - he know it's a dog...mine doesn't, and he doesn't know what a lot of things are called now. Your house is quiet....I would love for that TV to quit! All day and evening up loud because he won't wear his hearing aids.
Earlier this summer we were riding along and saw Elk. My dx ask what they were. Mostly he can't identify food. Yesterday he ask me to get some of those sticks. After a few ?'s I said pretzels? That was it, and he wanted those little round things. Vanilla wafers. He does know bananas, and sausage biscuits. Have a good day Bonnie