I know that most of you are experiencing the same things that I am going through, but I still feel alone. My DH has been declining relatively fast over the last couple of years. He has LBD, central sleep apnea, fluctuating blood pressure (sometimes goes up with activity, sometimes goes down, and sometimes goes up or down without activity), has trouble urinating (is now on both Uroxitral and Flomax), and his days are becoming more and more "fuzzy." I am now having to remind him to drink. Eating, on the other hand, is something my DH does almost obsessively.
His behavior is now becoming much more irratic. We went to see our new grandson yesterday. Just when we were getting to spend some time with our sons and grandson, my DH just told my oldest son to help him up, out of the blue, and it was time to go. I was going to stop by the grocery store to get the fixings for spaghetti, and he insisted on coming in. Of course, he started grabbing all kinds of food. We now have blue berries, strawberries, and blackberries - lots of berries. He has eaten through 2 boxes of cereal almost single handedly in just a couple of days. I am not sure when he is eating it, but apparently he is because the cereal is gone. It is so much like having a big kid.
I know these experiences are common for most of you, but I don't have anyone that I can talk to about how fast the changes are happening. Yet, like others with LBD, I sometimes see my DH behave somewhat normally. He was so smart and there's a part of that intelligence that is still here. He heard my youngest son mention how odd it was the way my DH was ready to go and a few minutes later my DH was calling my oldest son and saying he hoped he didn't give my son the wrong idea. Yet, just moments before, when I was trying to call my oldest son without my DH knowing, I was outside and my DH came outside. When I asked him if he minded leaving me alone, he said OK and then stayed outside.
The UTSW folks said my DH was moderately severe, but I think he is crossing over into severe. In addition to the changes noted above, his liver enzymes are now off (they're high). I think the LBD is making it so that his body is shutting down ... or just going wacky.
We went on a cruise to Alaska (his bucket list wish). I thought of so many things, but didn't expect to discover that he talks in his sleep ... a lot! He was moaning, almost crying, and then, in the middle of saying things I could not understand, he said "I love you." It broke my heart! I tried to soothe him, but it crushed my heart to hear him so sad. During the day, he puts on this front and insists that he is OK, but at night, during his sleep, it is obvious that he is suffering so much more than I ever thought. I keep trying to keep this out of my mind, but I feel tortured. My heart hurts and I need someone to hear me, really hear me, so I don't feel so alone.
Please help me know I am not alone. This is killing me. Death by a thousand cuts couldn't be any worse. My soul hurts to my toes.
Oh, Sharan, you are not alone. Mine isn't LBD, but the erratic behavior, the giant child, the constant eating, are common for all of us. It's so sad. BUt YOU ARE NOT ALONE!!
Did you ever listen to The Pirates of Penzance, or see it? The Police who are supposed to be chasing the pirates, are scaredy-cats. Their women are urging them to go chase the pirates. So the police sing, We Go We Go. And the wives say, Yes, but you DON'T go, and the police again say, We Go We GO... and it goes on like that. They march backwards, they march around in circles, but they don't do what they say they ARE doing!
And that's what our spouses do. You say, get in bed. and they say, yes. But then they do NOTHING. You say, leave me alone, and they say OK, and sit right where they are.
Sharan--we hear you. You are not alone. This illness is a cruel demon that no one should have to endure. But somehow we will all get through it--sometimes one minute at a time. Please know that we all care and give you all the prayers, cyberhugs, and support we can give.
Sharan of course you're not alone. We are all losing our loved ones. That doesn't make it any easier for you. There is no changing it-the disease is relentless. At least here you can pour out your heart and we will understand.
Sharan, you are not alone. We can all relate to what you are going through. My husband is early severe. I take that to mean he is in early 7. He can still do things but things come and go. My dh does not want to drink and if he doesn't want to he won't. He does drink a cup of cranberry juice in the morning and sips some water at a meal and to take his meds. I keep telling him more water might make him feel better etc. but it just doesn't seem to register. He doesn't say anything.
Eating is much less than a year ago. He still likes his sweets. This is a good place to vent. I know about how we can't vent to family. I started going to the alz. support group in our area, this month and plan to go back next month. That is a good place to vent.
Sharan, you are not alone. I understand how you feel. Just a few moments ago I was having a real big pitty party for myself. It just hurts so very much to see the man I love being taken away day by day by day...... He has Parkinson's disease, heart blockages, and prostat cancer as well as the Alzheimer's. He is having a hard time urinating also. He is taking some treatments to help him be more comfortable. But...the last treatment made him very unstable and sleepy. He slept for 36 hours just waking up long enough to go to the restroom. (sometimes, not)
I have been so depressed today. I feel like I'm trapped in a dark hole. I feel a dread of impending doom. Yes you said it, "My soul hurts to my toes."
Lois, I didn't realize that your husband refuse liquids, too. Foster's doctor attributed his very low blood pressure to dehydration. Divvi made a suggestion and it is working. In the Baby Food section at CVS, they have Pedialyte popcycles..tubes of flavored ice (with electrolytes) to suck on. Foster will eat those when he won't drink liquids. They are excellent for combating dehydration when a child is siffering from nausea and diarrhea, by replacing the electrolytes in their body. I'd suggest you all try it. If they make too big of a mess sucking the ice from the tube, put it in a dish like sorbet. It is sweet!
I've said it before, but I will say it again: I am so glad you're here, but sorry for the reason. Gail, I can so identify with your dread of impending doom! It feels like a downward spiral that seems infinite in its variability while simultaneously feeling like a bottomless pit ... no one knows how long or what is going to happen next. On the one hand, my DH is young (51), but his body seems to be so much older. His legs are so stiff, his movements have become almost constant (his neck moves, both hands are constantly rubbing to the point where his hands are peeling even though I put lotion on them, and even his feet and legs twitch). He is getting where he can't remember the date (though, with patience, he can remember the year and then the month and then gets close to the day). The level of complexity of his thinking is so unbelievable low ... and then he will make a comment or connect something together that is so complex! Arrrgh! A part of me thinks that his bodily functions are going to go before his mind does even though he is young. The organs themselves are OK; it's the brain's coordination with those organs that is going bonkers.
I am guessing that it will be his sleep problem. They recently did an oxometry study of my DH with the VPAP (basically an external respirator) both with and without oxygen. On the VPAP with oxygen (2 liters), his oxygen did not go below 93. But with the VPAP alone (no oxygen), his oxygen dropped to 78. Who knows what in the world his oxygen would be without the VPAP? Even with the machine, the number of hypopneas continue to increase. I don't know if he would even still be able to function at all without the VPAP and oxygen. Oxygen in the 70s is low enough to cause brain damage. Frankly, I have increased his oxygen level just to try to improve his quality of life. I mean, its not like he has a condition that runs the risk of needing increased oxygen (like emphysemia).
That's just more details. Details that may mean something to someone. For me, they mean my DH is declining in an objective and measurable way ... one that is not subjective. By the way, the sleep specialist agrees that the central sleep apnea is an autonomic dysfunction. In fact, he said that sleep specialists are researching the connection between sleep disorders and dementia. They are connected, but who knows which comes first ... the sleep problem or the dementia. Hey, at least they are looking at the issue.
I am grateful that my DH is compliant ... at least he tries to do what I ask.
Again, I want to thank you all for your support and for letting me "share." It helps knowing that I am not alone, even though I would never wish this experience on anyone.
Nancy, that sounds good. Is that the same as Gateraid? Worth a try. I haven't measured but I doubt he drinks more than a quart of fluids a day. His BP has always been extremely low. Me? I have to have a glass of icewater in my hand all day. Probally why I have to use the bathroom so often. aherbet would be something else I can buy.
Sharan, here's the rope, hang on my friend. The crazy eating patterns and social phobia is all a part of this miserable disease. We are here for you. Arms around.
My DW seems to be drinking a lot less liquid that she did at home. At one time it seemed like I spent all of my time fetching ice water for her, she wouldn't go anywhere without water. Now that she is in the NF she doesn't drink very much liquid at all. She is offered plenty of liquids, but just won't drink them. Her kidney function is down to 25% now, she tells me she only urinates about once every two days. Yes, sometimes their brain doesn't cooperate with their body.
Here's another knot on the rope, I'm holding the other end tightly. Hang in there.
Sharan...can hear your pain! "Death by a thousand cuts couldn't be any worse. My soul hurts to my toes." So aptly put. How horrible it is to watch a brilliant mind be so tortured and we cannot do anything to stop it. Not right to feel so helpless.
My medical background begs me to ask you the question ...what are you keeping his oxygen saturation levels at? No problem increasing the oxygen flow to keep the saturation level above 93. That the periods of apnea are increasing does validate his decline. This research is very interesting...my husband snored with periods of apnea prior to diagnosis.
That you are both so young is very painful to read...Gob Bless you always and may He wrap you in His arms to keep you from getting lonely! But remember we are here for you as well. Enjoy your son's visit!
Thank you all for sharing. The rope and knots in the rope help so much!
scs - to answer your question, I don't have an oxymeter (sp?), but the sleep specialist sent my DH with one for 2 nights (1 with and 1 without oxygen). The doctor said to use 2 liters of oxygen so that is what I used to test on the night with oxygen. Otherwise, I had stepped it up to 2.5 liters (not much of a difference, I know, but it did seem to help him be a little more alert and I want everything I can get). With the oxygen and the VPAP (variable flow, responds to his breathing and forces air in when he stops breathing due to central sleep apnea - his brain forgets to tell him to breath or to breath deeply enough), his oxygen saturation did not go below 93. Without oxygen, it went down to 78 even on the VPAP. I don't know what the saturation level is with 2.5 liters, but it should be better.
One of my DH's nurses just called to tell me that my DH's elevated liver enzymes are due to what is called "fatty liver." Something new to research ... oh joy!
Again, thank you all for your support. I can feel the power of your prayers. Please know that I, too, am praying for you, for God to lift and strengthen you, and bring you true joy and peace despite the circumstances.
Talk about not being alone - I wrote and posted a blog today (6/29) about missing our spouses and how only an Alzheimer spouse could possibly understand how we can miss someone who we live with every day.Then I came to the message boards and saw this topic. When you read the blog, add your comments to this section, as it is so appropriate to what I wrote. We do understand each other so well.
I just read your blog and it is so true. My DH had such a great sense of humor. He could make me laugh when no one else could. It was the dry situational humor, the twist on what was said or not said, the silly conclusions that could be drawn from what people say, and the light in his eyes when he looked at me. I remember the times that we would just enjoy sitting next to each other on the couch, the small and tender touch, his warm embrace. Today, he sits on the couch. When I sit next to him, he rarely acknowledges my presence. I get him to put his arm around me and try to get him to hold me. It is not the same, not even nearly, even though it might look similar (once I am done positioning him, of course). Like so many of you, I miss his personality - the person who was my DH. His soul and his spirit are the same, I believe that sometimes I can reach him ... but those times are becoming so rare.
My DH was not only my lover and my best friend, he was my heart. When we were married, the 2 of us really did become one - one heart, one soul, one in God. And now through the course of this disease and my need to be able to take care of him, my soul, my heart, is being torn. The process is being reversed and I can feel the separation almost as if it were tangible. I am having to learn to stand on my own, to be my own support, so I can support my DH.
Others are affected in different ways than spouses, in my opinion. The relationship with a parent or sibling is less intimate. There's a level a degree of understanding, love, and acceptance we get from our spouse that no one else can give and that no one else can truly understand because each and every relationship is unique, with each partner giving something special to the other. One of the many challenges is the fact my DH is still here, though he is not here. I keep seeing him here. He walks (slowly, very slowly) down the stairs around noon (he sleeps a lot), but he is not him ... but he is ... somewhere deep inside. He is there, I still love him oh so very much, but he's not there ... especially not there for me, not even a shadow of what he was for me.
When others come around, he "puts on a show" ... but even now, the show is becoming quite transparent. My brother lost his best friend, but he doesn't talk about it (he's' an ostrich right now and who can blame him?). Even losing a best friend is not the same. As a spouse, we are frequently reminded of the small things we have lost and we struggle to hold onto and remind ourselves of the small things we still have, we hoard them and focus on them (hyperfocus some times), doing our best to stay in today for we all know what tomorrow will bring.
So, to the best of my ability, I keep trying to appreciate the little things and to make my DH's life as good as I can each day.
See Sharan...you are the best caregiver, 2.5 liters should do the trick. You do not need the oximeter you've got your gut! Remember when children were little and we knew at breakfast that they were going to be sick by bedtime. Maternal...as well as spousal...instincts are better than any well prepared medical practitioner. You go girl.
my dh just almost died from dehidration on the 19th of this month his bp went down to 40/38 so please make them drink more try anything you can, they have to give dh 2000 cc`s a day in the nh, he is doing so much better, please I don`t want anyone to go through what I just did.
I really miss the conversation. I sometimes feel like I'm living with a mannequin. Sometimes I look and he's just staring at me. Creeps me out a little but I think maybe he's not sure who I am. He doesn't read at all anymore. He just can't comprehend what he's trying to read so he just doesn't bother. I had to read his Father's Day card to him.
I'm thinking that if we have enough rope, perhaps we could tie it around the necks of certain relatives? Ooops! Did I say that? We are all here for you Sharan........Hugs to you.......
Sharan: I have experienced the same things that you have, but, you do a better job of expressing it. I recently posted that my wife had broken her ankle and is in rehab. We will be moving her from acute rehab to an interim rehab at a nursing home this week, but, this is the first time that the house is empty. I am alone and I don't like it. When she was here taking care of her was a full time job, but, now that she is not here there is an emptiness and a loneliness that is hard to explain.
I haven't mentioned before, but, when this disease was coming on and before we had the diagnosis, she pulled away from me and treated me terribly. This was after almost 50 yrs of married bliss (not quite, but??). She got so mean and unhappy that I didn't like her anymore. She even wanted to get her own apartment and that hurt really bad. Also, (I don't know if I can say this here) she started sleeping with a pillow between her legs because of hip and knee paid that didn't exist.
All of this to say, that with her meds, she has become tranquil and regrets all of this. I'm surprised that she even remembers, but, it seems to bother her a lot. She continually asks me to forgive her and tells me how much she loves me many times per day. I like that part better, but that isn't to say that it isn't confusing.
Thanks to all of you. You are the only people, and always will be, that have heard this part of the story.
If you have not read today's blog(6/29), please do so. It speaks specifically to what you said about -"when this disease was coming on and before we had the diagnosis, she pulled away from me and treated me terribly. This was after almost 50 yrs of married bliss (not quite, but??). She got so mean and unhappy that I didn't like her anymore. She even wanted to get her own apartment and that hurt really bad."
Dean, I sleep with a pillow between my legs (in my own bed, in my own room) because it helps my sore knee immensely and keeps me from having a backache. It may NOT be nonexistent! I know there are many things that distress you about your wife that can be attributed to her illness, but that one, not necessarily, and not necessarily as a rebuke to you!
I find I rest better if my left knee is elevated. The arthritis in that knee comes and goes, and it is just a habit to put the pillow under my legs. It also rests my lower back when my legs are elevated. Maybe it's just a woman thing!
Neuro surgeon told my husband it would help his back to sleep with a pillow between his legs, but he only sleeps on his back. I worry about blood clots with pillow because his circulation is not good.
That doesn't mean the same situation applies to Dean, because that could be entirely a AD issue like a lot of other things.
I find myself pulling away at times. I think it must be some kind of self-preservation or defense mechanism. I first noticed it when my DH "appeared" one evening about 6 months ago ... he was present in mind and body for just a few minutes. It hurt so bad that I pulled back emotionally. It felt like a knife cutting straight through my heart - the reminder of the love we shared was so sharp. I felt bad pulling back, but it was too late, he was already gone. I try not to berate myself, mainly because it was completely automatic and out of my control.
That's the push me-pull you craziness of dementia!
Dean - My DH has gone through a few times when he pushed me away and I know how much it hurt. The pain is hard to separate from the person. Obviously, your DW felt the pain she was causing even though she couldn't control it or explain it. I am glad the meds are helping. Just keep knowing that she loves you even when she can't express it ... I mean more than the words, the feeling that goes with the words.
I have written so many blogs on the "emotional divorce", as it is called. On pulling away to avoid more hurt; on the pain and joy when they do return to themselves for a few moments. I know it is a lot of reading, but please check out the previous blog section on the left side of my home page - www.thealzheimerspouse.com - and read these blogs: #87 (the emotional divorce); 88, 107, 129, 138,141,219,345,384 when you have the time. I'd like to hear what you think when you finish.
My heart goes out to all of you. No one knows the cruelty of this disease and that it goes on, and on..Death is final and one mends in time, but this is never ending. My DH has vascular dementia and has been in facilities since last October, still not settled, nor is my life. It is a constant turmoil for me and so, so stressful. He has been stabilized for over three months now and is within days of entering a care center. I am so very distressed today and the past few days since he has either gone to another level and obviously has suffered more mini strokes, and just not himself hasllucinating, etc. The psychiatrist who had done wonders with him, now had to put him on Atavan and a generic of Depakote, and he is just a sad, sad case now. He is just a couple of days from being placed in a wonderful care center, and now we have been thrown a curve. I waited so long and worked so hard for this room, and I am just devestated. The pyschiatrist said today either the drugs have affected him this way (which I really beleve, as they have in the past), or he has gone on another plateau. The effects of Atavan should be gone by morning, and that may tell something. I am so lonely and so afraid of my future and his.
HLK i see you are new here. welcome this is a great site for dementia spouses to sound off and hug each other in need. there is alot of info and much advise from many who walk the walk and talk the talk. hope you post often. divvi
Dear Sharan,You are not alone..this is a devasting trip we are all on...you wrote exactly what we are all going through. My heart goes out to you and your DH. because you are both so young. I pray for all the Spouses, to give us all the patience and love that we need, to endure this terrible nightmare..Hugs to all
Thanks so much Charlotte and divvi for your encouraging words. My DH has greatly improved since they took him off the Ativan, which he was only on for 5 doses, but it was enough to whack him out..a totally different person, and now back to "himself". I am so afraid that the NH will turn him down if they request this past week's records, after all the hard, hard work I have done for them to admit him. I won't know until Monday or Tuesday. How can I explain that he was not to get this drug and tell them this was not his fault and he is stabilized as he has been for several months? I just never get that elephant off my shoulders, it is one thing after another, and it seems any semblance of inner peace escapes me. My DH knows how hard I have fought for him, and his only concern is for me and our doggie, always asking how I am.
HLK, I wrote you a message a couple of days ago but didn't hit the "add" button, I guess. I've done that several times lately. What a relief that your hubby has improved. The Ativan must have really done a number on him. Will the doctor speak up for him with the care center to verify he was having a drug reaction? I'm saying my prayers that the admission comes through. Hang on, hang on, and please let us know how things are going. Here's a hug.
HLK, a drug reaction is not a permanent condition..and the fact that he has gotten past it since Ativan was taken away. I wouldn't worry about that. Better to know an "allergy to drugs" before he gets there...a Heads UP for them to know. I feel confident it will be okay. I understand, though, why you are nervous. Just stand tall, keep eyes focused on your plan and it will be ok.
I wonder if the Ativan described above is the drug called Avanza over here in Aus.I took DH to the DR. yesterday and he prescribed this Avanza, which I gave him tonight before I read this blog, and I had a job to get him to bed - completely wiped him out ! I doubt that I will be giving it to him again, it seems to have compounded the situation rather than helping. He was taking Lexapro with little effect with his sundowning, so was hoping that this new medication would do the trick.
God bless you Sharon, we all know the feeling of lonliness you are describing and our prayers are with you tonight.