Frand, I am sitting here crying for your loss, and admiring your wonderful, brave, heart. You are a wonderful model for those of us who still have to go through the dying process, I only hope I can follow your example and be strong for my family when our love departs this earth....May God enfold you in his love and keep you in peace as you begin a new chapter in your life.
Thank all of you so much for being here with me. LuLu and I did get to the beach today. It is wonderful, and so many beaches and few people along this part of the Oregon coast. Here are the last two things I want to share with you when you get to this place. If you use Hospice be sure and ask them how you manage needing help in the night. I've used Hospice before but with family that just faded away more or less. This was a death that took so much out of me and the last night I was way over my head. Maybe I should have called them a second time, but I got the feeling no one would come to the rig so whatever happened would be up to me. It is amazing what you can do when you have no other choice. The other thing - if you have made arrangements with a mortuary be sure you are all on the same page before you have a body. We joined the Oregon Memorial Society and I knew the cost at 2007, so figured it would be more, but not that much more. This was our last home and they had all the paperwork from when we lived here. Didn't make any difference - new staff and maybe someone else bought the place. Whatever, they quoted a price way over what I expected and I ended up feeling like I was haggling over the price of a car! I fianally came home, went on line and printed out the agreement and they apologized for everything. I'm not dumb enough to believe they didn't know exactly what they were doing. Whatever, they agreed on the price I expected and may be sorry they tried to take advantage of this widow! Love to all of you. Of course I am incredibly sad, but doing fine and do have friends here to hang out with in addition to all of you.
In the Adult class at church this morning we were discussing "Community". I realized that this group is definitely a community, even though we have never met in person (except for a few).
Marsh, well said. Fran, I keep thinking of you. I am truly glad to see you still posting. Good for you for standing your ground. Shame on them for trying to take advantage of you in such a trying time. I am glad you have friends with you, and that you took your walk on the beach. Take care and please do post when you are able, I would miss you if you stopped. Nikki
I do check this post a couple of times a day since you have been my lifeline through those last days. As marsh said, we have become a community. No walking on the beach yesterday - it poured down here. A good day on the Oregon coast is only a 50% chance of rain today!
Fran: So glad you are able to be back with us during this time. When you get to feeling better, I was wondering if you could just give us a little history and time line on Hank"s journey, like when you first thought he might have AD and how he actually progressed through the various stages and how long it might have taken. Also, what did you think was the most difficult stage or problem area. I know this is probably asking a lot for you right now, but sometime maybe you can do this for us that are still making this horrible journey.
Frand--I wondered if it rained in Oregon yesterday. It started here in the Puget Sound area about 2 o'clock and it rained in Biblical proportions for several hours. It's suppose to be rather nice here today. Hope you get to dgo to the beach today. Don't forget to take a little basket (or something) to gather things in. Although with the storm, the beach will probably be quite clean. Don't you love it after a big storm how clean everything looks and smells.
Blessings, dear Frand. You'll never know how much the sharing you've done has meant to all of us.
JudithKB - Hank was one of the lucky ones that didn't die of end stage AD. I haven't seen the death certificate, but imagine it will say 'geriatric failure to thrive'. We married in 1997 and one of our first projects was to have a wooden boat built that had been a long time dream of Hank's. I actually saw it on line last night - Rainyday Bartender was at the 2004 Wooden Boat Show in Port Townsend, WA. Anyway, by the time the boat was ready for water it was evident that Hank simply could not remember how to operate it. It was a wonderful project and memory, but we sold it in 2001 after hardly being out in it. We moved to Astoria in 2002, and at that time I wanted to move from our more remote area because I was concerned about Hank's memory. A couple of close friends also noticed. In 2003 we went to a research hospital and he was diagnosed with MCI in June. That was changed to mild AD in December of 2003. I thought he was in late Stage 4 or early Stage 5 before he had some sort of medical issue on 7/9 of this year and then his AD was much worse, perhaps because of the other declines in general health. Don't know if this helps and of course, each person is different.
JudithKB, my husband did go thru all the stages of AD so I can give you my story...
My husband was 50 when we got a diagnosis of "probable Early Onset AD...that was in 1997. But, when looking back I could see some little signs that something was not quite right in 1994. By the time he was diagnosed he could really no longer work..he was in sales and marketing....and he couldn't remember clients, products, directions, filling out expense reports, etc. So, we applied for his Social Security Disabiity and his private Disability Insurance...got them approved and he was relatively "okay" for the next couple of years. I continued to work and he was able to stay alone during the day, could drive in familiar areas and got along pretty well. But, in 1999 he began to deteriorate more rapidly and by the early part of 2000 he could no longer stay by himself so I quit work to care for him. We went along for another year or so and then he became angry, hard to manage, had poor sleeping habits, refused to bathe or change clothes and his whole personality changed. I did start him in Day Care in late 2001 and that bought me a few months of him still being at home. But, one day in April of 2002 he couldn't figure out how to get into the car to come home, he started kicking and fighting anyone who attempted to help him and I finally broke down and called his doctor and said I was having him taken to the ER by ambulance and have him admitted and look for suitable placement. His doctor was so relieved that I was finally going to do that....I was a slow learner...LOL!
I did find a place for him and he was not an easy placement because of his age and behaviors. In mid 2003 he became incontinent and very unsteady of his feet and was pacing non stop. He fell many times and broke his nose every time...so, when one day he couldn't remember how to walk it was a blessing. I called hospice in October of 2003 and they took over his care that very day. We didn't think he would live very much longer but once he was not walking he started gaining weight and actually his condition improved. He was under hospice care until January of 2005 when they were unable to recertify him. At that point he was bedridden and I was spending most of my days at the facility taking care of him that I figured what the heck..why not bring him home, which is what I did. He was unable to talk, move or do anything for himself so the care was much like caring for an infant. In February of this year he got aspiration pneumonia and I called hospice in and he died on March 16 of this year.
So, our journey lasted over eleven years....that blows my mind...but, you just get thru it and make the best decisions that you can and then when it is over you can say you gave it your best shot. (As far as the worst part of the disease....for me it was the middle part when he was angry and uncooperative and you never knew what was going to happen next. The end stage was a breeze compared to that.)
Another thank you frand and Sandi. You know what some of us are thinking....how long until we go through the darkest part of this tunnel with no light at the end.
I too would like to thank you both for sharing your stories with us. Fran, I looked up the wooden boat, my sis lives in port townsend, and she said she went to that boat show in 2004...small world.
Fran - Just now reading all these posts...so very very sorry for your loss. I hope that you will find peace in the days ahead, knowing that you both are no longer in the hands of AD. My best to you as your journey in this life continues. God Bless, Debbie
Fran, Thank you so much for sharing in this difficult time of Hank's passing. As always, knowing is helpful, and no one can tell us the whole story like someone who has been there.
We are expecting our first grandchild in Nov. He will be named Henry, and is already referred to as "Hank".
My DH has this disease. He is pretty good at the present time...I am grateful for this. My mother and her younger brother both died of this disease and each was different. I got to my mom's on 1 Nov 1994..10 days later she was gone. What had been going on before had been kept secret from me until one sub nurse was honest with me on the phone. She said I would come now, she could last a day, a week a couple of months maybe but I doubt it. When I got there Mom was at home in a hospital bed. She was still alert to a good degree, she knew me sort of..enough to be annoyed if I was away or in a room where she couldn't see me..as the days went on it was difficult to get her to eat anything. First the pudding went and then the ensure, then we were lucky to get a little water in her..We kept her clean and had to move her every couple of hours or so. WE took the nail polish off her large toenails and sometimes the nail went dark then returned to a normal color. Later we saw that her legs got the tea dyed look and then returned to normal...also she would feel cool at times then quite warm at times in the lower extremities. Finally she would wave her arms around and at first we thought the ceiling fan which was on slow was making shadows on the ceiling that bothered her ( she could not speak) so we shut that off but to no avail. She had some capacity to still understand a bit so I asked her if she saw anyone and she said yes with a nod. I asked it if was her mother and she smiled and her dad was there as were some brothers and sisters..This went on for a few days..The hospice nurses were on board for less than one day before she died and that day they provided a booklet of impending signs and as I was reading it then checking on my mom I would see these things and I said to her " Mom what are you doing demonstrating?" About 2 in the morning I thought she was about to slip away and had my dad brought into the room. He was a retired surgeon. He told the aid to go get a washcloth with cold water , ring it almost out but leave a bit of water in it and he twisted the rest out over her forehead. Mom was comotose at this point. She winced and my dad said No she is with us and he went to bed. The next morning the hospice doctor and nurses came out to see her and at that point she was actively dying..her breathing was very light, the arm waving stopped, she was calm. She was not cold either..cool a little in the legs but not cold. I watched her throat and it was lighter and lighter and lighter..the doctor said she was gone but the nurse motioned to me with a nod, no she isn't..then she just said "it is 9:56" An aid an I bathed my mom and put her in a new night dress, covered her and let her be in repose so my dad and brother and whemever wanted to come by could pay respects. I noticed that as we let her rest and not be "managed" her body relaxed and the expression on her face became a smile..
Her brother by contrast, was in a NH and on the skilled level ward now needing more supervision. His day started out as usual and he had been in the sun room with the others. He had a lunch but by about 2 he spiked a fever and for what reasnon the nurses didn't know. He had not shown any signs of not feeling well..Wehn I stopped by chance as I was on my way home from San Diego, he was in bed. He had been given tylenol to bring down the fever. but it was climbing again. The nurses were giving me a lot of bull about test set for tomorrow because he can't swallow well etc and had been having trouble for several days..I was brutally to the point and told them not to blow smome in my face, my mom died of the disease and he is sitting and breathing and the odor is the same..he is dying..later a shift change nurse, a lovely woman, said I was right and said she would call me the minute anything changed or if she thought things were getting dicy and she would make sure there was a cot or something for me in his room so I could be with him..I left the NH and got home 3 hours later at 9:15 pm and at 9:30 the nurse called to tell me he had just died. She was going to call my aunt..I said not to do that yet..let me call her sisiter in San Diego ( aunt is in LA)..My aunt was recovering from cancer treatment and no one was with her and this news on the phone might kill her..I asked they let me call her sister and let her know, I'll call back and let the nurse know I reached her and then she can follow up with her by law call that she had to make..It was my aunt's sister and her husband who got up and got to my aun't house early the next morning to tell her. That one nurse was extremely kind and understanding..not all the others were...just depends... My uncle's final decline was so rapid it was a surprise to the staff especially when things in the morning and at lunch were so normal for him..then the fever...and that was it..
Fever, and hard breathing and high pulse are part of it. My husband spent yesterday (Wednesday) with all of those; they gave him suppositories to lower the fever, and ordered morphine for the speedy pulse and heavy breathing, and gave him oxygen. The only problem in the whole day was that the pharmacy was slow in delivering morphine, so my husband's breathing got more and more labored as the day went on. When the morphine was finally there, they gave it to him every 15 minutes (in his open mouth, sub-lingually so he didn't have to swallow). And when his breathing finally calmed, he was able to let go and die. Which I was very happy to see.
I agree with your recommendation. briegull. I wish I had arranged hospice sooner. But how do we know? Now that my husband has passed, I know about the signs (all mentioned in the previous posts) in the dying process. I do so much appreciate this website and the members here who so willingly share information, insight and wisdom. It is helpful during caregiving years and now during the grieving time.
My DH was accepted into hospice today. I am looking forward to the extra support for both of us, but really am clueless as to what the future holds. He is in a good NH and very well cared for. Even in his profound dementia, people are just naturally drawn to him. It is one of his special qualities. Not knowing if this will be years, weeks or days is wearing on me. I am always on high alert and it is exhausting. I am looking forward to the support of hospice for myself, too. I am alone in this State with few friends and intend on taking advantage of any and all support that hospice can provide both of us.
I forgot...during hospice interview, I mentioned that one of my dh simple pleasures was to lie in bed together and just listen to each other breathe. Maybe hold hands, but no real touching. They are ordering a bariatric bed that is large enough for both of us to lie down on. I hope it brings him comfort and I hope we get the bed.
sheltifan i do this sometimes too. just get into the hospital bed and lay next to DH. i can hear him sigh sometimes even in late stages so i think its therapeutic the closeness and contact. he becomes very relaxed, as do I. i am sure you will feel better having the bigger bed. divvi
Earlier this week, we got my Dad approved for hospice. He is almost 97, with some age-related dementia going on and has just been sleeping most of the time, eating and drinking very little. I have been suggesting this to my brother for a while now because from reading everyone's posts on this subject, I didn't want to wait longer than necessary. They have already provided the mattress that adjusts pressure automatically (the NH doesn't supply them), and hopefully, there will be other benefits forthcoming.
I got a call from NH yesterday around 5pm that my DH had spiked a fever of unknown causes of over 103 degrees. Hospice nurse was there and they administered morphine, ativan and tylenol supposatory. His fever is around 101 now for the night.
His eyes are half-closed and staring at nothing. Unable to make any contact. His breathing is labored, then ok for a while, than labored. His heart is racing pretty hard. He is somewhat agitated and crys out a bit if he tries to move.
Talked to regular nurse throughout the night a few times and she thinks he is fairly comfortable. He looks terrible to me. Like a death-mask slipped on his face. Do you guys know what I mean by that? He doesnt look like himself, really..his skin on his face is taut, cheekbones and jaw bones are protruding tightly through skin, eyes are sunken, half-mast and fixed on nothing. Feverish shine to his face.
Hospice says it is now a waiting period, to see if he can rally through whatever is causing fever. NH nurse said, it is her personal opinion that people with neurological problems (such as my DH, major brain atrophy..brain stem, cerebellum etc) tend to spike fevers near the end, as the brain damage causes the thermastat inside to go haywire. Hospice says this event could be anything from UTI, aspiration issues, or another internal infection or even a stroke. It came on super fast..less than an hour and his fever was over 103.
I regret starting a new job now. I thought we would be coasting along for quite a while before something would happen to him. My new bosses are very nice, and know he is on hospice as of last week. I am set to take training classes all this week. As you can all imagine, I want to be with Len..not sitting in front of a computer trying to concentrate on new skills.
Patty-I am sorry for what you are going through. It was the same for me. Many times I thought-this is it-and it wasn't. Takes all the stuffing right out of you. I don't think any one can tell you "when". My thought is to carry on your life as well as you can. We are here with you.
You describe exactly what we went thru last week. My husband died after one day, but he was 86 and not in good health. I know you want to be with him. Is there any chance you can postpone starting the job? As far as that is concerned, sometimes training is on line and you can go back to it.
The look is typical my hospice nurse told me. He looked for the sunken cheeks. Does he grab your hand? When mine didn't respond to touch, that's when I knew he was dying. If he's moaning and his heart is racing it sounds like he could use more morphine until he's as comfortable as he can be.
I don't know about postponing the job. I am starting my 3rd and final week of training and I already want a leave of absense. Doesnt bode well. I am going to NH before going to work and will make a decision when I see him this am. and Bluedaze*..kicks the stuffing out of you is spot on. There is so much waiting, wondering and not knowing with this disease, it is really hard for a control-freak like me. Let go and let God. It is my mantra, but I am so crappy at applying it.
Patty, I am so sorry your Len has spiked such a high fever, I do hope he is comfortable. Do you know if they have tested for an infection? I do know that death mask you are talking about. Lynn had it with when he was so sick and spiked high fevers.
I can understand your need to be with your husband, and I am sure your boss will too. Best of luck, I will be thinking of you both <3
so sorry to hear this news sheltifan. it could be his kidneys too if its fever. i am assuming you/they arent treating for infecions and let nature take its course. i agree if hes moaning or any signs of discomfort more pain med is warranted. while the job is important so is your peace of mind. i am sure you arent the only person to have a crisis occur in training. speak to the bosses and tell them the situation. not all job qualifications are on the job so to speak. character and wanting to do the right things counts too. i would think they will allow an absence in an emergency. divvi
Divvi, you are right on. My job was very understanding and has given their blessing for me to concentrate on Len full time. Hospice feels it will be within the next few days. I curl up next to him and his fever is just raging. We are letting nature take its course, with morphine and ativan as buffers.
i found this website and it has helped me a lot to understand some things. maybe it will you also. http://www.helpguide.org/elder/alzheimers_disease_dementia_caring_final_stage.htm
Sheltifan, most folks are more compassionate than we think. i am so glad it worked out for you. i know you will take this time to reflect and spend loving time together. i can only imagine how difficult this is. with you in thoughts and prayers. may his be an easy passing. divvi
Sheltifan, I will have you and your family in my thoughts and prayers. I'm going through the same thing. DH's doctor told me last night that he could "hear the angels circling." I'm seeing the same things you are seeing but don't have hospice on board yet. Should start in the next few days.
Bruce, thanks for that website. I'll try to access it later. I have laptop in DH's room and usually have a little time.
I get into bed with him once or twice a day..push my shoulder under his head and hold his hand. He seems so peaceful with that..and so am I. If I put my finger to his lips he will kiss it.
Someone said "I hate this disease" and I think that so many times during the day..and night. I HATE THIS DISEASE AND WHAT IT HAS DONE.
goodness. jackie i am very sorry to hear of yet another turn for the worse for your spouse as well. seems this summer is adding up to be the months of biggest losses here among our friends. i am so glad you and he are at peace. divvi
Jackie I am so very sorry........ ahhhhh I think we all hate this damn disease. I hate it with every fiber of my being! *sigh. How very sweet that you are comforting him with your snuggles. You brought tears to my eyes...... keeping you in my thoughts and prayers <3
Patty and Jackie, my prayers are with you. My husband is in the same pattern with yours. He had his event the same morning as Briegull's but is determined to stay with me. I am staying home from work until he passes. This is a rough time for us all.