A few minutes ago my dh and I were sitting out on the patio. He never compalins of pain or anything hurting and all of a sudden he grabed his forehead with both hands. Scared me to death...I thought he might be having a stroke.
I asked him if his head hurt and he said "It kind of hurts". He has a difficult time talking past 5 words so it was a guessing game to figure out what he was trying to say. I said does the inside of your head feel funny...he said yes....Does it feel foggy...he said no.....and he kept trying to tell me how it felt. Then I said does it feel like an electric shock to your head....and he said yes. I then asked him... is it kind of like when you see someone on tv with that metal cap on and someone is giving them an electrical shock. And, he said yes...just like that.
Has anyone else had their spouse describe to them a spell like this?? Once he told me his head felt foggy, but this is the first time he has told me anything like this.
I would call his doctor or ER or nurse (BC nurseline out here don't know what it is where you are) on telephone and explain to her what just happened. This sounds like it should be checked out...better safe than sorry.
When the doctor put DH on Keppera, he started having headaches. When I asked him where it hurt he would always say - my head just feels tingly. After I weaned him off the Keppera, no more headaches. Not sure this is the same thing though.
No...Vickie...this is not like that. This is a one time thing...first time he has ever had any real complaint about almost anything. This sounded like he was trying to describe what AD does inside your head when the wires get crossed or something. I am not really worried about it because I know there is nothing can be done...but, it was frightening to me to see him grab his head like that.
It was gone as quick as a flash. He is on hospice and I have agreed to only pallitive care and he is no longer in pain...so the ER is kind of out of the question and they probably would want to do about $6,000 worth of test...that is what happened the last time I had him at the ER.
This is one of those kind of things when you wonder about "only pallitive care". But, I have kind of come to grips with that. I think.
judith, my DH and several here have whats called myoclonous jerks. and my DH has what i call electrical shocks to his head. they can be easy or strong and the stronger ones cause him a startled look if they are harder. they dont last long like you say but are scary to watch. maybe hes having this. or it could be caused from a med he takes? ask hospice. they will know more. divvi
I truely believe this was some type of AD brain disconnect...just another wire so to speak getting crossed or something. He wanted to take another nap and slept for about an hour. I can see him napping from a place where he can't see me and I checked on him about every 10 min. When he woke up he sat on the edge of the bed for 10 mins. After he got up his speech was not good at all...just a bunch of mush...I could only make out about every 3rd or 4th word. I do think he was trying to tell me he knows he is getting worse and he might not get better. I acted like I didn't know what he was saying and changed the subject....I'm not ready for that discussion with him. Maybe it was a small stroke...probably will never know.
He does have those jerks as well as true seizures but they are only at night. Guess I was being tested by the Hospice Gods to see if I would cave and get medical help....I can tell you it wasn't easy to do nothing...I sat on my patio and cried and was so torned about what I wanted to do. WOW...this is so hard... and hurts so much...to do nothing. Got to get stronger.
JudithKB My husband has described this many times. He takes Effexor, and when he misses it he has these. He has not had one for awhile. He did tell the doctors and it is a side affect of the antidepressant for him. I would ask the doctor everyone is different with medication. I also think sometimes it is the desease.
judith when you are concerned pick up phone and call hospice hotline. they will send out a nurse asap to look him over. day or nite any hr. they will assess him and make recommendations. they are there for you to call 24/7. use them when you have concerns. you arent alone and have them to help make decisions. if they assess him and determine an ER visit is in order they will make arrangements for you. divvi
Thank you all for your comments. Bad night. He was up and down all night going to the bathroom to pee. He would come out of the bathroom and get in the hospital bed instead of in the bed with me. I'm going to have him start sleeping at night in the hospital bed. I think the two beds is just to confusing for him.
I will call the Hospice nurse and tell her what happened. Strange the Hospice nurse had just left yesterday afternoon when this happened. Unfortunately, neither my dh or I like this woman very much. To me she seems totally disconnected from his true condition. Hospice has used his heart condition as the major reason they are here and not his AD. He meets the conditions for Hospice more readily for his heart condtion then the AD.
The Hospice nurse said to qualify for Hospice with AD you have to be bedridden. I don't believe that is true. I have read about the Federal requirement for Hospice care with regards to AD and it doesn't say they have to be bedridden. When his neuro doctor said he thought he had about a year to live she dismissed that in a nano second. She said...Ohhhh NOOO...this AD can go on for years...maybe 20 years.....And, when I point out various changes/declines in his condition, she dismisses them like that is nothing...when I can see this man dying before my eyes....or maybe it is me that is just so wrong....I am so confused.
This is terrible to say, but I feel like this nurse only is interested if a person is on their death bed. The other nurses that come are not like her at all. Even my dh said he didn't like her.
Judith, report that nurse to the Hospice Director of Nurses and request that another nurse is assigned to your DH's case. I had to report both a nurse and aide one time when they were not following his doctor's orders. I didn't like doing it, but it had to be done.
Judith, get rid of that nurse..she is not empathetic and no supportive in the least...Ever hear of Nurse Ratchet? She sounds like she is right out of the Coocoo's nest...
Mimi...you just gave me the first laugh I have had in days. When my dh could understand somethings and could talk...he use to call me Nurse Ratchet...and he would tell ever dr. we were seeing...he was married to Nurse Ratchet.
Poor soul now can't put 3 words together.
I think I am going to be doing something about this nurse. Two days ago the shower gal from Hospice told me my dh had the potential for a bed sore on his left shoulder and it looked ready to "break down". Well, yesterday I pointed it out to Nurse Ratchet and she said ...."Hmmmm..I don't see anything there." Well, tonight when I was giving my dh a rub down with what I refer to as axle grease to keep his skin oiled I could see the place and the skin is about to break through. I am really pissed to say the least. And, I am calling the office tomorrow and request amother nurse come out and take a look and bring pads for his potential bed sores...he is so thin and sleeps like 20 hours a day and this is something that has to be watched every day.
Judith, get rid of that hospice nurse, first thing. 2. She is wrong, MY husband was accepted into Hospice and he was NOT bedridden. He could get about with his walker. 3. IF (how many times do we say "if") IF I had been you, I'd have called Hospice, since they tell us not to call 911 or another health care facility, and at least documented the event for the file as soon as it happened. Squeeky wheels get the grease. They will know you and in turn, you'll get more attention. I know you are trying to handle everything yourself, so did I, but they are there to help you. IF you don't like that nurse, tell the nurse supervisor you need a change, that both of you do not feel comfortable around her. Say "comfortable", so they won't asked you specifically WHY. (which I doubt they will do)
I lurk and read, ... and your situation just caught my eye. Hang in there... You are obviously a very good caregiver and definitely NOT Nurse Ratchet!
Nancy B* is correct. My husband was on hospice for 4 years and was only bed bound the last few days. I am an RN and know only too well how different we can be. I sat with a hospice patient who was actively dying in hospice house. Even there the staff varied in their action and compassion. As my patient was taking his last breaths we all stayed with him. I held his hand and spoke to him the entire time.
Nancy & Blue....what do you think was the major casue of your dh's deaths or do you believe it was AD. Did you see the end coming or was it just all of a sudden. I know these are such personal questions, but if you don't mind I would really like to know and I am sure others would too. I feel some of these hospice people know little about AD.
Sometimes others make us feel like we are over-reacting or just totally stupid. I am beginning to think I am both. My dh just got up for a few minutes around 3:30 and is back in bed. He has now slept almost 19 hours since he went to bed last night at 7:30 and he can't put more then 3 words together. I am so utterly depressed. He can still walk ...but, very, very slowly.
JudithKB-there are several Blues but I suppose you mean me. Cause of death on the certificate was end stage dementia. The part of the brain destroyed determines what part of the body is effected. It is usually a gradual system shut down. I knew what was coming and when. Our hospice seems to know more than usual about dementia. They spend a fortune on specific training. I feel so honored to be a part of it. I'd rather not be too graphic about the dying process. Joan can reach me if you want to share e-mail.
Thank you and I certainly understand. My e-mail address is listed with my ID....if you feel you would like to explain more to me then feel free to e-mail me otherwise I don't want to bring hurt or any pain to you. You were really lucky to have such a great Hospice.
JudithKB, the cause of death listed on Claude's death certificate was "alzheimers type dementia". His was also a gradual system shutdown like Nora mentioned. Our hospice was fairly small, but they were all wonderful and very knowledgeable about alzheimers.
By chance I happened to meet the Director of Nurses at the Mall recently. They have grown considerably in size in the last 3+ years. His favorite aide and nurse are still with them. I had planned on volunteering with them altho not to the extent Nora does, but unfortunately my health won't permit it.
I am a firm believer in Hospice and without their help the last four or so months, I wouldn't have been able to keep him at home.
Like Bluedaze, the actual days as he lay dying is very hard to write about. I invite you to write me personally via email and I'll tell you what you want to know.
What I do want to say is that "being healthy" doesn't insure your LO will live longer than another person with Alzheimer's. I've read many comments lately where the caregiver says, "He is very healthy otherwise." Surely you have been told that there will be organ failure as the disease progresses.
The brain controls every function of the body, (aside from memory/speech). Doesn't it stand to reason that when the disease reaches the part of the brain that controls organ functions like the kidney, lungs - they will fail. It's the worst, the most cruel, the most unrelenting disease I can imagine. My husband died at home. I was with him every minute, and as I have said so often, I knew exactly how this was going to end, but I couldn't help begging, "Not NOW!!, Please, please please.. NOT NOW!!!
But it was NOW. and nothing I could do would change that.
JudityKB - just clicked on your orig post. I really don't have anything more helpful to add than what's been said, but wanted you to know I hear your anguish and understand. God knows this is not easy no matter what you do, but you are doing what is right for you and DH at the moment. Nothing more can be asked or expected from you. I send you additional strength. Betty
My mom died of this disease as did my uncle, her brother. My mom had a pacemaker so it may have kept her going longer than she might have otherwise. Still, her decline went over months and months. I think my mom would have been stage 7 for a good year or better. But toward the last months, she had this "chimpmonk eating" where she would store things in her mouth rather than swallow..there were a couple of hospital ER visits over choking..she lost wt fairly quickly though her wt had been going down significantly for the year prior to the time she was actually bedridden. Her last 11 days were ones where she waved her arms about. I thought it was the shadows from the ceiling fan so we tried to shield it, she seemed to focus on something toward the other end of the room..I asked if she saw her parents and she motioned yes..or it seemed so to me. A few days prior to her death, her legs began to mottle,but turn normal again...the nurses took the nail polish off her toes to check circulation. Several days prior, she began having changes in he breathing as if she forgot to take a breath..cheyens stokes (sp_) I think it is called. Then the last night of her life, her shoulders and back of her arms began to look as if they were bruised..the blood was pooling there...but in the morning, she had very light breaths, no bad sounds, and her last breath was like a butterfly lifting off from a flower. She was gone in less than a whisper. My uncle seemed normal, as normal as can be for an ALZ day....but in the afternoon he spiked a fever. The staff put him to bed, gave him some tylenol and the fever came down but then started up again. WE are not sure what that was about..when I saw him, he was sort of comotose but seemed to know I was there. He died that night... I think each event is similar. Our hospice gave us some literature on what would be the signs we would see. It was amazing and terrible..
Thank you all for your posts. I think I am just having one of those bad times we all have off and on during this terrible journey. I just need to get a grip and try not to worry so much. I am usually a very positive person and all the negative feelings are not good for me. Got to shake this off.
Thanks again for all the comments. What would we all do with out this wonderful place.
JudithKB, you have been on my mind and in my heart all morning. If yu get a chance can you check in with us? I know that you are in burdensome place right now, but hope that you feel the prayers that are surrounding you.
Thank you Shell for your concern. The Hospice nurses seem to agree that my dh did have a TIA. It took him a few days to kind of recover, but it seemed to be a classic TIA. But, on Sunday morning he seemed to have some kind of worsening if you will...who knows. His pulse, when doing nothing shot up to 119 and then within a half hour or so dropped to 52. Very strange...no one seems to know why or seemed to be concerned about it like I was and that seems to be the position of Hospice....if you aren't in the mode of actually on your death bed....just go with the flow. They did tell me to put him on the oxygen and I did that and it has seemed to help his over-all situation.
Having Hospice is kind of a learning curve and not an easy one at that. Most of us have never experienced not calling a 911 or our doctor when medical things go wrong and when you have Hospice you can't do that because you have agreed to nothing but pallitive care. They are wonderful in providing you with all the equipment you need, social service support and medical professionals coming to your home. It just takes learning to go with the flow....unless the sick person is already on the last weeks or month of their lives.
JudithKB palliative means different things to different hospices. Mine will treat with antibiotics as a comfort measure. I have mentioned this before-but newbies might not have seen it. When your LO can no longer swallow you can add thicket to a favorite liquid like lemonade and freeze it on a teaspoon. They can suck on it like a Popsicle without choking on a thin liquid.
Thanks blue...I had real problems last night with some really big pills...the size of fish oil pills except they are very hard. They are 500 mg. pills and I have a call in to the druggest to see if I can get 250 mg. pills that are smaller and he just take two of them.
The banana (I chuckle when I spell that) is just one product. Thick-it is a medical grade option. Instant mashed potato flakes are a less expensive option.