Susan - what good news Dylan is home. I sure hope he is able to stay this time.
HB had his PCP appointment today. I asked about whether we should decide whether to see him or neurologist or both. He said both. The neurologist will handle any meds associated with AD and he will handle anything else that comes up. His cholesterol was up as was triglycerides (due to lack of exercise I am sure) and his blood sugar had creeped up some but still below the high point of level. So I guess he will have to stop the coconut oil, cookies and ice cream or cut down. I told him we would stop the coconut oil and keep the coconut cookies!! He did the MMSE and he scored 17. In January he scored 22. But, he did the clock perfectly whereas he had trouble in January. So, I knew he had lost some ground but I don't think he is that low. We see the neuro next month so will see what she shows.
Today was the first time the doctor brought up whether I had talked to social worker yet. He asked if neurology had given me any information and I said no to both. So we spoke with the social worker today. It was really hard for hb to sit there listening about day care, home help when needed, etc. I am not sure how much info I will get right away. She is new to the VA and new to AD needs, but she is willing to learn. She had just attended some meeting the Portland Alzheimer Association had. I told her about this site and she was amazed at what I knew.
IMO - this should be a required research site for any one dealing with dementia patients and families.
HB has his dental appointment today but had such a headache after the doctor/social worker meeting that I took his place. I have one cavity (been 7 years since dentist last) but it is a big filling so a crown is the only option to fix. That will have to wait until I see tomorrow about the broken tooth hb has. It never ends.
At least the sun was out today and it didn't rain!!!
Charlotte, We were faced with the same cholesterol, triglicerides, weight, as your HB. My thoughts were, what the heck, let him enjoy them. What is the point in taking away what he loves. Eating was one of the things he enjoyed most after he really began progressing. Just my thoughts.
Beautiful day here in Maine, off to several appts for me and Mom. Hope you all have a great day.
A beautiful day here on coastal Maine. Sunny (not a cloud in the sky), warm (67°), enough breeze to keep the black flies away. DW and I spent some of the afternoon sitting on a bench overlooking Union River Bay to the mountains of Acadia National Park, watching the breeze blow through the grass of the field and make patterns on the bay. Our lilacs are in bloom - 2 weeks early!!!! DW seemed to enjoy it. I know I did.
Oh marsh! I'm jealous! Bar Harbor is the only place I've visited that evokes memories in all senses. When I think of our visit their, I can smell the water and pines, I can hear the roar of the waves crashing, I can see the beauty of the cliffs - trees - water - flowers! Ahhhhh......fond memories.
Finally a partly sunny day here in PA. Kind of humid though. Calling for the possibility of severe storms this evening. Marsh, my lilacs have come and gone. They were early too but they didn't last too long because it got too warm. They are my favorite flower.
yahouniey.....I have lots of Amish, Mennonite and Brethern family up there in Lancaster and surrounding areas (Boltz's, Miller's). Yes, they have a very different set of 'family values', but don't be fooled. They have the very same family issues we 'english' have....with kids, teens, elderly, etc. We'd all like to think its a simpler way of life than our own, but its really the same....maybe more complex....without most of the modern conveniences. My daughter (between the ages of 8 and 11) wanted desperately for me to send her to PA to be amish. I couldn't bear to part with her, even to experiment with family. Then, between 11 and 14, she insisted I send her to military school. Nope. I still couldn't fathom being without her every day. As I look back, she was aware she needed real regimetation, structure, in her life. Wish I'd done one of those things for her when I could have. Mistake. Today is cloudy, rainy and dark.
A beautiful day today and I worked in the yard this morning before it got too hot. Trimmed hedges and pulled weeds. DH is still in a fog from our trip this week and not anywhere back to his "normal". Son is still doing well with the transplants, both kidney and pancreas are working and he has had no insulin since the surgery. Is up walking some and if all goes well he will be released from the hospital Sunday! It's a real miracle!
Hope you all have a good day tomorrow - peaceful! That's what I pray for.
Jen, hang in there, the sun will come out tomorrow. Hugs
Beautiful day today and tomorrow is suppose to be sunny and in the upper 70s. HB went to the dentist today to see about the tooth that broke the other day. The dentist found another broken tooth and one with a decay behind the filling. He wants to put 3 crowns on and I said 'no crowns'. He says a big filling will only last a year but I can not see spending $2400. Shoot I am having trouble the $800 for a crown for me.
Marsh - some of our lilacs are come and gone, but I have a hybrid one that is just blooming. But the true purple and white lilacs are long gone.
Morning all, having trouble getting motivated. I just feel exhausted. Would like to climb back into bed and sleep. Maybe I will. I feel guilty sitting here when my 77 yr old mother is running circles around me. Aghhh, I wish the sun would come out.
It's warm here, and going to get warmer. My roses are beautiful, the flowers are lovely, and since I'm going to Hot Springs for the weekend while my husband is in Hospice hospital for my respite, it is supposed to rain the entire time! Hopefully, we'll have time between showers to see the bath houses and take a paddle boat ride on Lake Hamilton. My grandson hasn't been there before, so I'm looking forward to showing him a nice, historic town. Debbie gave me a massage as part of my Mother's Day present, and I am getting it tomorrow at the hotel.
Any of you who don't have "respite time" need to find ways to obtain it. Without respite, we won't survive AD. We have to take care of our minds and bodies so that we can take good care of our spouses (spice). I'm so fortunate to have five days a month, now that my husband is in the last stage of this dreaded disease.
Vickie, I'm so glad that your son is doing so well! Hopefully your husband will recover after a few more days.
Charlotte, I agree with you - no crowns at this stage!
I think it's time to get out of my house and rejoin the community again. Last night a friend went with me to religious services and I survived. This morning I will walk down to our club house and try to get through a yoga class. Even though I have been alone in my house for three years I feel even more alone with my husband gone. I don't want to be a widow.
Lovely, lovely day here in PA. Bluedaze, I know how you feel. I have been alone for almost a year since my husband was placed. I am alone but not "lonely". I work full time and spend my evenings with him. He is still a big part of my life. I think I will feel lonely after he is gone. I have been a widow and I don't want to be again, but I am pretty sure I will.
Ready to "run off" with neighbor, Bob.....we're going to the Natural Bridge for dinner tonight...then home. Then sitting by my firepit by the barn (in our coveralls), going to watch a Netflix movie of his choosing (instantly to my laptop!). Champagne is cooling in the 'fridge. If Bob were 30 years younger, everyone would have something to worry about.....especially dear Bob!! LOOK OUT!!!! Not to worry......he's like my Da'. AND same age.......then again, he's just a LITTLE older than John, but still BRILLIANT!
Had a very nice evening out yesterday, as described. Watched part of 'Spartacus, Blood and Sand' on the laptop by the fire outdoors! (NO! don't watch it if you're squeamish...bloody, violent, lots of foul language, naked bodies doin' stuff....sorry, not for the kiddies....a ShowTime series available through Netflix and I swear, I'm hooked on it!). Going to The Homestead for late lunch today, so I'm going to go get ready. My neighbor is worried about me, I think, and is trying his best to keep my mind occupied and me within sight at all times. Bless him. Very cloudy here and nice and cool. It could rain. When I get home later this evening, I'm sitting in the middle of the living room floor and FILE RECIEPTS and stuff I've had to pull out over the past several weeks.......and pay bills. eeeccck.
Granddaughter brings our great-grandson over every day the weather's decent and they can walk over. HB enjoys "talking" to him. GGS is 7 months; good conversation. Sometimes they go for walks together. Saw neuro on Thurs. MME 14, recent scan shows more brain atrophy. Surprise! She's too patient and once in awhile gives a hint on MME, but most often hb still can't answer. I told her I think tests/stages don't mean much--it's behaviors that I gauge regression. She agreed; said it's academic. Keep him busy and active as much as possible to enable him to be home as long as possible. Granddaughter told me yesterday she and her mother and siblings have talked about rotating staying w/him so I can still be involved with groups I've been working with; and when he's more confined (he takes daily walks), they'll work w/home health care, too. They're ahead of me on planning! Thankful for them.
Zibby, bless your family......I think that is the one good thing that came from the battle with the AD monster....it brought out the best in my kids. Keep on doing things that you enjoy...it is good for you and you will come back to the caregiving a bit refreshed. Also, you are blessed with a great doctor...we were, too. What a difference it makes...he said to me more than once...that there wasn't much he could do for my husband, but he was there to help me anyway he could. I always told him to just give me the right meds to keep him from killing himself or me and we would be all right. Sounds bad, but that is where we were.....
Another rainy day here in the Midwest so I think I may take myself to the movies today......
My friends dragged me out to lunch and a movie. We saw Letters to Juliet and it was wonderful. No rough language or rolling in the hay.http://www.newsinfilm.com/2010/05/13/letters-to-juliet-review/
Oh Jeanette, I went to see Date Night with Tina Fey and Steve Carrell....well, it was pure crazy fluff and had no redeeming social value...I loved every minute of it....LOL! I usually go to see these kind of movies alone....I leave the better choices when I go with friends...But, being at the movies is just fun.
I am certainly planning to see Letters to Juliet..that looks wonderful. Then, of course, I see all the kid movies with the grandsons.....
Well, off to plan something great for dinner.....chicken parmesan has been calling my name all day.....
DH never ceases to surprise me with his memory. In the past he rarely remembered our anniversary unless I said something. He woke up this morning, looked at the date on his watch and said "the 16th, happy anniversary and kissed me'. Why couldn't he do this when he was 'well'? Such is life. 39 years of to hell and back and now we are heading back to hell. I guess the rain this morning set the tone for the day - depressing. I did the whites today, will leave the rest of the dirty clothes until tomorrow.
Received a call from BIL this morning. Back in February we thought he was in the final stage of AD, but he temporarily bounced back. He told us their dad was taking no food or fluids. We just called the hospital ourselves and talked to one of the nurses. Seems he had pneumonia a little over a week ago and they treated him with antibiotics. He cleared up some but is still running a low temp but this time Bil said no more antibiotics, ate over the weekend some but has not had fluids since yesterday. It is interesting that he seems to be in so much pain as many here have not talked about your spouse being in pain at the end. They stopped all meds except the thyroid and zoloft which the nurse said they would discontinue if he stops being able to take fluids. So, he could go in a few hours or a few days.
HB wants to drive back, which is the reason for the call. Most likely he would die while we are traveling. I told hb that either we get back there to see him before he dies, or get back in time for the funeral. I don't know what to do. I really do not want to even go back there, even for the funeral. Art says we can drive and he will force himself to do long days. I hate making all the decisions and having to be the sensible one.
Charlotte, sorry about your father-in-law. I can't remember - is he on hospice? If he's in pain, they could give him medication for that without prolonging his life. Have a safe trip if you decide to go. Please keep us posted.
janet - I don't think hospice was called in. they are giving him morphine to keep him comfortable. My BIL told us that they are not only donating the brain but also his eyes with the brain. since they have found evidence that AD may show up in the eyes first they were happy to get the two together to study.
Not a great day. I received a call around 4:00 from the ALF, my husband has pushed a lady resident, she wasn't hurt, but scared & was crying. I had to make the decision immediately whether to bring him home or send him to the behavior hospital...he could not stay there. I decided to with a heavy heart to send him to the hospital. They expect him to stay 7-10 days...they will try to get his medication adjusted. He can return to the ALF, however, I am weighing bringing him home. I am so heartbroken that it has come to this. I am afraid he will be confused & scared in a new place it just breaks my heart to think of it. Please pray for him.
Dear Kadee I have been where you are. I hope with the proper meds your husband will calm down. If your husband does have to go to a new place you many be surprised that he will get used to it. He probably won't remember much of his old ALF and won't be as traumatized as you think.
As of now, we are leaving tomorrow after his dental appointment - or as soon as we are ready. I would rather fly but he wants to drive it even though the cost aren't that much different. It's just whether we rent a car or take our own. His sister said we could stay with her - if she remembers! I am not sure how long I can take with the both of them and memory loss. Plus she yaks, yaks, yaks but I love her dearly. If it gets too bad we can always go to a motel. I am not sure how long we will stay. A lot will depend on how his dad is when we get there - if still alive. If he takes a turn for the better again, we won't hang around. If we were taking the motorhome we could, but not with just the car. I am assuming we will be gone 3-4 weeks. Hope our kitty remembers us when we get back.
From others experience I hope all the change in routine will not cause hb to go downhill. That is my fear. If we were taking the motorhome it would not be as drastic. It is numbers - the cost of gas for a motorhome at 8mpg vs a car at 44mpg.
I am leaving my new computer home but will take my old slow one with me. then I can check in occasionally - every night I can get online!!
I have thought all night about the long trip and concluded I don't want to risk the long days of driving. I told him either we fly, which will cost more, or not go. He said not go. I told him in March you wanted to go and then you didn't. Yesterday you wanted to go -today you don't. He has until this afternoon to decide. I know he is working on emotions which is not normal for him, so we will see.
Kadee - I was very surprised at how quickly my husband adapted to the new environments when he was moved. I moved him 3 times in 6 months and he did better at it that I did. He didn't have to go through the meet/greet/get to know you stage for each one. He just kept doing what he was doing.
Today is a cool rainy day and even though we can use the rain, I would prefer the sunshine. I definitely don't get as depressed when it is warm and sunny outside.
We watched the baseball game last night when I was visiting him at the facility, he actually watched it and was a bit animated by it. He never used to watch baseball under normal conditions but now he seems to enjoy it. It took me a long time to learn and understand that just because they hated something when they were normal does not mean that they will hate it now and just because they loved something when they were normal does not mean that they will love it now. For me, figuring out discovering what works as he is now is kind of fun.
A rather dark, gloomy, rainy and cold day here. Took Millie to the groomer and she's been prancing around making us laugh. She always does that after being groomed! So funny.
My son is doing good, although he did have a slight fever this morning. But has been discharged from the hospital and staying nearby for return trips for testing. So far, so good.
DH is slowly returning to his "normal" after the trip. I've just stayed nearby since returning and gotten him back on his schedule.
Today I found out from the Lymphedema Dr. that my case is not severe, but must be treated now. Daily sessions to start. I thought last week I was facing release of the 4 small toes on my right foot (cut tendons so they can straighten). Instead I will be losing the 2nd toe, but not before the Lymphedema is dealt with. As was explained to me, if the amputation was done now it would not heal. Any infection would mean a higher amputation. The Dr. today is very optimistic that we can resolve this and I'll only lose the toe. Then I came home to an e-mail that my baby sister is in recovery from heart surgery--closed the small opening between chambers of the heart that should have closed at birth. It has been found that patients who have migraines with auras and sparkles and have had a migraine stroke, often still have this open hole. Closing it stops the migraines, etc. Then in another e-mail, I found out a cousin has passed away. It's been a rough day.
Sorry for the heartache but for you and your sister it sounds like there will be good outcomes. Am glad to hear that.
I use to have migraines but they quit and then the starburst started in.the doctor was surprised because it is very rare for the headaches for so long. I still occasionally get the starburst and auras.
I spoke to the doctor in charge of my husbands care today. My husband is very, very confused as to his surroundings. He is starting him on Topamax & taking away the Lexapro. He said, the sometimes Lexapro makes dementia patients more aggressive. It will be just trial & error. I called a couple hours ago to speak to the nurse...not a good report, he had slapped another patient. They had to restrain him, he was given Avitan & Zyprexa, however, what normally puts people to sleep, didn't phase him. Still hoping for a good result.
Kadee-even today sometimes the docs treat all dementia patients the same. The usual AD drugs increase agitation. Very high dosage of seroquel or respiradol sometimes work and the dose later reduced. I have been where you are.
Bluedaze, you are the only person I ever heard of who (sort of) enjoyed the colors of a migraine...cwazy wady. I had Cluster headaches years ago, which I can describe as the feeling one might have giving birth through an eye. Don't remember if there were colors, spinning circles or starbursts...just a full term baby trying to come out through the pupil of my eye.
Today would have been Jim's 63rd birthday. It's gray and raining, I feel drained and achy. Just curled up in his robe, sipping coffee. Oh how I miss him. Nothing prepared me for this.
FOGGY and cool this morning....s.western VA. I have lots to do today, as a matter of fact, ALL WEEK. I put too many things on lists that are all over the place. Lawyers and doctors take up too much of my time, still. I think I'm putting at least two of thier children through med school.....feels like it. Can't take all that expense off on my taxes??? Seems like I should be able to. Wish I could just go outside and do some hard work, get all worn out, discover that its already getting dark again and go back to bed. Always overwhelmed, waiting for news and phone calls.
We're having good Spring weather right now. Between the Sunday thunderstorms and those expected tomorrow and Friday! I've learned to appreciate the sunny days!!!
I'm a planner, and making plans keeps my mind busy, and it's fun. And I need fun. I've had three things wrong with me in two months...that stupid cough that wouldn't go away; when it did, I had five days before a sinus attack/cold hit me for a week; then I had almost a week before a 24 hour bug hit me. Now, I am basically healthy and don't get these things. Obviously, my resistance is down even with vitamins and extra Vitamin D. I do know that caregiving takes its toll, but I am fortunate to have 5 days of respite a month. I've told my body that it HAS to stay well. Let's hope it listens!
I hope each of you stays well; that you get respite; and that you have someone that you can count on nearby in case you need them.
Mary, I have 5 days respite every 90 days, but haven't taken any yet. I'm thinking of going to Chicago next month for my step-great grandson's highschool graduation, but am worried about how DW will take it.
Marsh, when your daugther was a toddler, and you and your wife went somewhere without her, think of how she reacted when you got home. They are elated, then they sulk, then they forget and everything is okay. She might seem to have gotten further down in the stage she is in, but sometimes they snap back after a few days. Sometimes, it is because it would have happened even if you are there. Even if she does get unhappy, she will forget it quickly. Go. You will be surprised how refreshed you will feel. (And the guilt only lasts a day or two.)
My husband is easy to take care of and goes with the flow. He doesn't object when I leave, nor does he acknowledge when I return - until I get him his chocolate malt on the way home....bribery works wonders with toddlers. <grin>
I just came back from a week in California. I didn't tell Jean that I was going (he's in a Nursing Home). I didn't know what to expect when I went to see him today. I don't even think he realized that I had been gone. He didn't act a bit different.