The kids go back to school on Tuesday. It's the labour day weekend in Canada and it's one of the holidays we agree on except for the spelling. Except for Quebec of course where Monday is Fête du Travail.
We don't have a president's day because we don't have presidents. We have prime ministers like in Britain, except somewhat less wonky these days, where their prime minister is determined to 'hard Brexit' (leave the EU with no plan whatsoever) in order to fulfill the will of the people - where only 52% voted for that. That's going to get exciting this fall for anyone who wants a break from following domestic dysfunction and watch someone else's for a while.
We have Ribfest weekend out here, where with two universities, we close several streets so that the kids can move in, and the night sky is filled with fireworks which will really light up tomorrow night. This year the big Blues Festival was a little different. The city decided you could bring your own cannabis, but it couldn't be sold at the festival even though alcohol could. We legalized that last year and we're still working out the kinks.
We have a huge number of Chinese students that come every year. You have to wonder what they make of Canadian life. Or the Canadian winter where the joke is that if you see a pile of warm clothes moving around - there's probably a Chinese person in there. All I know is that we have an unusual number of good Chinese restaurants and that is my favorite food.
Here's hoping September is a kind month to everyone.
I will try to get the cremation paid for this week. Hopefully will meet with the facility nurse on Wednesday and maybe the doctor they have contracted can check on Art Thursday when she visits. Then the following two weeks I have jury duty. Irks me when I want to I never get called. When I don't want to (or have moved) I do. Depending on what I find out from the nurse and hopefully doctor, I may try to get out of it if things need to get done in that two week time. I still have not figured out about the dog since she would have to go 8-10 hours without going out since I have to be there by 8. I am not sure how long it last but I know the courthouse is open until 4. I called about that and the clerk said to let them know when I am questioned and may get excused if it will be an all day case. I liked when I lived in Donald, OR - jury duty was a one day commitment. I was looking forward to it. Got in the courtroom, waited 2 hours with no translator showing up so we were dismissed. I was disappointed.
Made my first time through his stuff from up in his cupboard. Got rid of a garbage bag full of stuff but have about half still left. I will need to go through it again, deciding what to keep and what to donate. I could not believe he had 4 instruments for checking electrical! Have lots of screwdrivers of all sized, found more sockets for wrenches and for changeable screwdrivers, lots of allen wrenches which did not surprise me since he used on the printing presses, and a few things I am not sure what they are! I did find colors that our grandson did for him probably about 7 years ago. One had a note on it about him being sorry for throwing the cookie at him and how much he loved him. That had me in tears.
For those whose spouse has died, how many certified copies did you get? Seems to me when we talked about this a long time ago 4-5 was the number.
His neurologist from the VA phoned this morning about a different subject but I told her what was going on. She agreed he is probably entering the severe/end stage. Contacting palliative care and hospice is a good idea. I have this week to do it then I have two weeks of jury duty which I am praying I am not needed. Anyone that feels lead, pray when I check in on Friday evening I am told I am not needed.
I paid to have extras and it wasn't very much. I think they offered 10 if I remember right at the funeral home.
Some uses:
Changing a joint account to yourself only. Changing bills in both names to your's only. Changing the title to property. Resolving pensions that are running. Applying for any income supplements you may be entitled to either now or later. Selling cars, trailers, property in both names or updating to your name only. Applying for any death benefits you may be eligible for. Closing out the spouses income tax file. Executing any will that applies. Fulfilling state/federal specific requirements. Providing proof of status requests (ie: widowed or beneficiary). Notifying medicaid or medicare or the nursing home of changed status.
I would check the title of the car and trailer, the requirements for any medicare or such that you might be receiving, check the bank account name, any bills that are regular and in Art's name or both, whether the nursing home needs one, and try to have some spares.
I thought there couldn't be a more senseless time for someone to be called for jury duty than you getting a call right now. This doesn't come close, but it's still senseless. Today in the mail DH got a juror qualification questionnaire from the regional United States District Court. (This is not normal jury duty where you go to the courthouse at the county seat. This is for jury duty in a federal court, which would have meant a trip to the nearby metropolitan area in a different county). I have just finished their paperwork explaining why he would not be a good choice for being a juror. Their paperwork said that if he didn't respond, he could be summoned to the clerk's office to complete the form. I'm pretty sure "summoned" doesn't mean that they call and ask him to come.
Some years back I was also called for this court. Fortunately I was exempted because of being a caregiver. Surely your situation would qualify for an exemption. On the form they sent, one of the grounds for exemption was for "a person who is essential to the care of aged or infirm persons". And you are absolutely essential. I hope they listen to reason, and that you will be excused. Certainly you have enough of a load right now without something being added.
In some states, anyone over a certain age can be forever exempt -- if they express that preference. In my state that age is 72, may be different elsewhere.
Had a good meeting with the facility nurse. The doctor they contract with will be there at 11 tomorrow. She will do an initial exam of Art and refer him to palliative care. I was sitting in his room while he was going in and out of his closet. Finally asked what he was doing - said he had to pee. Directed him to the bathroom. Found out he has peed in the closet before, even has crapped a couple times outside, one time on the chair.
I am still toying with the jury duty. I will make the final decision whether to try and get out after talking with the doctor tomorrow.
My hb did that for a long time before he died. Fortunately not the closet, but sinks and trash cans. Funny he’d pee in the sink right next to the toilet. It cracked me up one time at the Adult Day Care they very seriously told me he peed in the trash can in one of the empty activity rooms. Like they were somehow surprised a man with Alzheimer’s would do that???
I told the them that is one reason I wanted to place him, so when he started doing it, it would not be in the motorhome. They laughed, said they understood. I was hoping he would be one that would not do it. They will need to leave bathroom doors open so he can find them which might help. I am glad he did not do it at home - did not want to be faced with cleaning it.
That was always called 'the deal breaker' on this board. My memories of it are fairly horrible.
This discussion reminds me of Lorne Down, a friend in high school, who's parents told the story of playing cards in the kitchen when Lorne was young, and he woke up and came into the kitchen, stepped on the trash can which flipped up, pulled his wienie out, peed into it, let it flip shut and went back to bed. He was sleep walking.
arrived around 11 to be there when the doctor arrived. She didn't until about 11:30 but that was fine. I found Art unresponsive and she could not get him to respond even to pain. He was laying there with his mouth open like after my mom died so I knew it wasn't good. His heart and breathing are so low she said he can't respond. He could come out of it but if not in 24 hours to call hospice in. Basically she said he was in the dying process. The dog didn't even want to lay with him which was sad. Of course he didn't respond to her either.
Charlotte, even if he recovers you should talk with the doctor about hospice. He hasn't been thriving and this would provide some additional help for him.
OMG, Charlotte, definitely a change on the downhill slope. Keep us updated if you have time and energy. I am really thinking about you and Art this morning (and Jasmine, of course.) As Paul said, it really sounds like it's time for Hospice.
Charlotte, I'm so sorry to hear about this. Please call hospice. They will be another set of eyes and ears and hands for care, and possibly also some support for you.
When I arrived around 5 last night he was up, had just eaten dinner. Other than a little more tired he was his jolly self. When I left at 6:30 he was fading laying on his bed, his breathing slowing down. I have not gone today but called twice - he ate breakfast and lunch - currently outside. This 'normal' can stay for a while or he could have another episode tomorrow. The doctor mentioned a pacemaker or going to the hospital yesterday but totally understood and agreed not to but said she had to mention it anyway.
Heard back from the jury clerk. I never received the letter from the doctor so sent her an email that I would just show up and hope he doesn't take a turn for the worst again. She talked to the judge and got me excused saying I don't need the added stress.
What I had been procrastinating on, I did get the cremation paid for yesterday. That is good. I told my kids that there would be no viewing, no service - just directly to cremation when he dies. That he does want his ashes buried in Wilmington Mass where he grew up and his parents are buried. My daughter is upset - says her dad deserves a 21 gun salute!! She wanted to know if she could take his ashes back there because in a couple years she would be able to afford it. She has got to be kidding me - she has had no interest in seeing him the last 11 years. She took off after all we had done for here without even saying goodbye. Hurt us both but her dad more. In her dreams will I let her.
Hi Charlotte, my heart is with you during this terrible time, especially since it sounds like you have no one close to be with you. I'm sure you know this isn't unusual for AZ patients. Three different times the Dr called and said my Mother wouldn't last another 24 hrs so we would leave everything and drive 2 hours, sit by her bedside all night and by morning she'd rally. But the last time he said there is no way she can last through the night. My sister was already there and was calling her kids, I wasn't sure we'd make it in time but we got there about 7:30 and she was so pleased to see me. The aides had her all cleaned up, a clean night gown and a flower in her hair :) I sat on the bed hugged her and talked to her a minute and she breathed her last breath. My sister said I told her you were on my way and her heart just kept beating, I think she was waiting till you got here. For some reason she always knew who I was. She thought my sister was her younger sister, thought my husband was her older brother etc but she would always call me by name.
I know only a fraction of what you've been through with Art, your husband of many years, and know your emotions are all over the place right now. The waiting for each day is so hard. I pray God will hold you in his arms through the end of this journey.
Charlotte, I hope you can get hospice on board ASAP. Even though he may have more time than it appears, hospice should be able to make him comfortable, especially with the details of his personal care you have had to take over. Their help would take a bit of the burden off you. Also, when the time comes, please let me know if I can do anything at this end to help with the arrangements.
I talked to the nurse who said the time is not right yet for hospice. If he goes again like on Thursday and doesn't recover then bring them in, otherwise they will continue to take care of him. It is when he become unconscious or semi-unconscious then bring them in. Will be interesting to see how he is, if he will be awake to meet the doctor when she comes in on Thursday.
I was sitting here listening to praise and worship music when a song about healing came on. Tears started escaping my eyes cause I realized as much as I would loved to be healed of my hip and knee pain I want healing for him. As much as I want him here with me, I want more for God to take him home where he will be released from nasty Mr Alz and be whole again with our Lord. That is one reason I was disappointed when he woke up the other day.
I am aware that this could go on, the doctor even talked about it. I am assuming much of it has to do with the 'failure to thrive' where his body and heart are not getting the nutrients to operate even if the brain is able to still telling it to beat. Since he missed 2 meals on Thursday wonder how much more weight he has lost? In old days he could miss one meal and loose 5 pounds!
Charlotte, You can call an agency that provides hospice and get information directly from them. There is no requirement for being comatose in order to have hospice. The goal of hospice is to provide comfort and dignity in the dying process for the patient and the family. After you talk with a hospice agency, or two, you can decide for yourself if their services are something you can use now, or if you wish to wait.
My experience is the same as what lindyloo and Paul are saying. My husband was fully conscious when hospice came on board. They did not take over his care; they simply did extra things to make him more comfortable, including visiting him, which he enjoyed.
I think different places have their own procedures. The practice at my husband's facility was for me to ask the head nurse for a hospice evaluation, then hospice came in and evaluated him to see if he was appropriate for their program. They said he was and I approved it. The decision was mine, not the facility's.
I agree with the others, several of our friends have had hospice a while in advance of being in a comatose state. Our grandson was offered palliative care right after he was diagnosed with terminal pancreatic cancer. There is no straight line with AZ and you both should have this extra care during this time.
Let the tears come, there are no extra points for being stoic - it just downright hurts! and tears can be part of the healing process.
He was sitting outside holding three pillows when I arrived. Since it was 94 outside I got him to go inside. He sat in his chair, drank his root beer I brought him then dozed off. I expect him to be tired now. I imagine his heart is still slow (just not as slow). The doctor will be back on Thursday and I will ask for the referral - all they can say is 'not yet'.
I am watching a program called "The Case That Haunts Me'. The actor portraying the detective is David James Elliott who starred in JAG. I know he did a comedy after JAG but I never watched it. He definitely has not aged as nicely as Catherine Bell who played Mac and now in the Good Witch.
Last night, after a better than normal day, DH sat down to talk to me seriously. He told me that he thought he was going to die pretty soon. How do you respond when someone says that? I've read enough to know that sometimes people do know days or even months ahead, and die right when they said they would. I didn't feel like I could just dismiss what he was saying.
I asked him if thinking he was going to die soon made him feel sad, and he said no. But I can't imagine that it would be something that would brighten your day, either. I did not tell him that I had been starting to wonder more about a timeline, too, because I can see more functional decline almost every day. Also, he is sleeping more and more, and sometimes even with his CPAP he has a bad level of sleep apnea. We're also waiting for the most recent ultrasound on what the doctor thinks is likely thyroid cancer. This is in addition to other medical issues, like a really slow heartbeat. So this didn't seem like just some offbeat thing said by someone with dementia.
I have a feeling that if we tried to talk to DH's doctor about this, that she would think we were nuts. Maybe we are. But it kind of doesn't feel that way.
It has to feel like a knife going into your gut when he said that but you are right that some can sense it. The slow heartbeat can make them really tired. Like the episode my husband had last Thursday the doctor said his heart and breathing was not strong enough for him to wake up. I still think his is slow because of his lack of energy and attitude. That is good that he is not sad the thought of dying. He is probably tired of this disease just like us. Sounds like he still has some comprehension. I would go along with him, validate how he is feeling even if it is not how you feel. Is he aware he might have thyroid cancer? If so, maybe that is why he brought it to let you know he is aware and to assure you it is alright.
If the doctor is any good she would not think you are nuts but being realistic. Sort of like when the doctor told me last Thursday we could do a heart pacemaker or hospitalize him both of which I said now. She understood but had to suggest them once even though she knew I would say no.
Jan, I'm sure the doctor wouldn't think you were nuts. She probably has these kinds of discussions with people all the time. Just make sure everybody knows what his wishes are in terms of end-of-life care. This would be a good time to have that clarified, if it isn't already. (CPR? Feeding tube? Ventilator? Or just keep hydrated with IV, and pain-free? Or just pain-free?)
In my experience as a nurse and as a family member, you don't want to shut the person down when they want to talk about dying. I usually say something kind of light, but not shutting the door. Like, "Well, let's not push it, but we're all going to go sometime, so..." And then let the discussion continue, with everybody feeling kind of relaxed and comfortable with it.
I found out 2 nights ago that the father of a friend of my son is dying. He has been fighting cancer for years and when I last saw him he was doing well and it seemed to be beaten.
I just found out he had a stroke a little over a month ago. The family has been quiet about it. We only found out because they needed my son to stay at their house yesterday morning to wait for the hospice staff to set up a bed (the father was at the hospital and hospice wanted to be sure that the bed was set up before he came home). He returned home. This has bee a long and hard battle and he and his family decided that if the cancer isn't gone it is time to discontinue treatments (they should have gotten final test results yesterday).
I talked with the wife 2 nights ago and we discussed hospice. The children came home 2 nights ago (one daughter was in Germany, the youngest son was starting college). I assume that the end is near since he is so weak. He has largely recovered from the stroke but is bed bound due to weakness.
I've learned from this group and others to stay in contact with them. I am not sure when to visit since he is best in the morning and pretty out of it in the evening. I think Friday morning will be good if it is OK with the family. I don't worry about having the perfect thing to say.
My husband told me about 3 months before he died that he felt he would die soon. I told him that besides ALZ his body was in perfect shape (he had no other health issues at all, perfect BP and was in great physical shape) and that we had a long time. He would have a bad day with confusion and irritability every once in a while but otherwise I thought he would end up in a nursing home at some point. The week that started his downward spiral came after a trip to watch our grandsons in a talent show and ballgame. That was on a Tuesday and by Friday he was in the Geriatric Psych Ward and a month later he was dead. When I talked to the Chaplain and told him what Dave had said, he told me that he had heard that so often and he felt that the patient just knew. He was only 70 years old.
Art is doing great today - joking and happy. Best of all, got him to take a shower!!! I told him I had new pants for him but would not let him put them on his dirty stinky body. 'N' and I were showering him, he was holding the shower when he turned it on me right into my face!! So I got a partial shower too!! My shirt is still wet but it will dry out soon. When I left he was eating his lunch and happy.
Weird - just notice my picture for here has changed. Use to be a purple ribbon. Going to have to investigate that.
So I went to Joan's FB page to send a message about the spam. Saw where she had a serious medical crisis last month - something many do not survive. Some here that are in contact may know about it. My question is: if something happens to her, what happens to this site? I guess we all just need to get email addresses from each other if we want to keep in contact since she has never indicated giving control to someone else.
A second set of spam just hit. I emailed Joan about it. I don't know anything about the nature of her illness. I hope she recovers and has some good years ahead of her.
Charlotte, I glad Art is feeling better. Less stress on you, too.
It was my profile picture that I had by my name. I checked my account - for some reason not only was my purple ribbon by my name gone but the profile picture I had on my account was gone. Weird.
Charlotte, just a thought, but Art may have been given the wrong meds the day he was so ill. It happened at my husbands ALF but of course no one would admit to anything. The wife of a man with Parkinson's had to keep track of his medication and there were an alarming number of errors. You might want to periodically inspect/count his meds.
The only one he is on is sertraline. My thought is besides the progression of the disease, due to lack of nutrition because his body is not process it (thus the weight loss), his electrolytes or nutrients the heart needs was off. He is better right now but any day it could happen again. Thinking back he has had times when getting up he is dizzy/light headed which happened again a couple days ago when he was coming in from outside. Could be his blood pressure drops. Doesn't matter - it is the disease. There are now only 14 residents - two recently died - and one of the 14 is on hospice so that leaves only 13 the give meds to.
Charlotte, That's why I asked. I saw that the picture of you and Art was no longer on your profile. So I checked my profile, which had a picture of the inside of my shed, and instead of that photo, there is some weird emoticon that says "tiny pic." (I'm going to try to remove it.) I wonder if there is a glitch in the website or if it has been hacked. I never did hear back from Joan after I emailed her last night, but that's understandable if she's not feeling well.
My husband had an event like that, where he appeared almost comatose, but he revived the next day. It was not too many weeks after, however, that he started to fail.
tinypic was the program we used to upload our pictures to here. That was the same pic I had. Why it happened I don't know. Not going to worry about it. From Joan's FB page sounds like she had a medical crisis that most don't survive. If she has not made arrangements with someone, if she does die or can't do the site anymore, I assume it will be gone. :-(
He was still 'up' today. Only lost 1 pound this last week. I am prepared as much as possible that it can happen again and he may not recover next time. Which, to be honest, would be a blessing.
Had the meeting with the palliative care nurse today. Since he did an about face, there is really nothing for them to do at this time. But, he is in the system for when he is.
Is his birthday today which he denied it was. He was eating lunch when we (dog and me) left but they were suppose to have a cake after lunch for him.
The last two days have been cloudy and showers which I find depressing. I live in the desert for the sunshine not clouds!!
We have clouds here too! I keep remembering how Jim would call me to come outside and look at them. He’d point to a hole in the clouds and say let’s go there. That’s from his flying days. I said that at his funeral and all the pilots said they’d remember that every time they see a hole in the clouds. They’ll imagine flying again with Jim.
I love clouds. Always have my camera ready for when I see unusual formations. A little off topic - when we lived in the CA mountains, which were all destroyed by the fire in November, all we had was a volunteer FD. One young man, Dave, lived with his family in a mobile home, down and around the mountain from us. He was dying with cancer, unable to work, but when a call came in if he was able to get out of bed he would respond, knowing how important it was. When he died the service was held in a clearing in the mountains surrounded by tall pines. You had to drive up then walk in. The road was jammed with people. The redwood casket lay on a stand at the center of the clearing. After a short service several forestry planes flew over in the "missing man" formation I believe. Then his older brother stood up, walked to the casket, laid his hands on it and said,... my brother didn't have much education, made just enough money to support his family, just an ordinary guy. Then in tears, he added.....as long as I live I'll never forget how wealthy he was in the amount of friends who cared enough to make the journey to say goodbye. His wife and children were at the front, and when the brother sat down, a lone helicopter, rose up in a spiral, up, up into the clouds till we could no longer see him. There was complete silence, it was almost like Dave himself was ascending into Heaven. It was the most reverent service I had ever been part of.
How beautiful oakridge. And it is not off topic since this is the daily thread. Thank you for sharing. So many different things give people comfort, some things people see as morbid, some go against others belief system, some are just that - actions, words, songs, etc. that bring comfort to those left behind.
When my daughter was young and granddaughter young we use to lay on the ground and watch the clouds looking for formation. For the last 3 years Art will look at clouds and see objects or animals in them - something he would never let him do his adult life. I often wonder if he did it as a boy but will never know.
I thought of you today Charlotte, with Art. I have a dear friend who has an older husband, moved to AR couple of years ago to be nearer her son. This year her husband had himself admitted to a home, said it was time, she goes every day to feed him Lunch. She is 85, maybe 86 now and he is in his 90's. She called one evening just as friends walked in and I couldn't talk -- then it was phone tag - which stopped almost two months ago. As I passed the turnoff today where she used to live I tried to call her, went to voicemail, tried again on my way home, still voicemail. Makes me think something has happened to her husband as he was going downhill the last time I talked to her.
Then I thought of the trials you've had this last year, and what you're going through now - the waiting game of never knowing. Almost wishing the time would come to release him from AZ, yet knowing your life will never be the same again.
I often will hit google to find out if past people we knew are dead or not. If they have died you usually can find an obit. Might try that.
I too pray for his release sooner rather than later. I hate seeing him exist this way.
I was waiting for the support meeting to start, was around 4:30 but meeting didn't start until 5:30, when I got a call he was screaming and yelling about some guys trying to make him do all the work. He would yell outside and then come inside to do it. I asked if the guys were working on painting the buildings behind the place which they were. I told her when they were pressure washing them last week he had the same reaction. When I called at 5:30 he had calmed down but was still angry and wouldn't come in. When they left he calmed down some. I stopped by on the way home (about 15 minutes ago) - he was still outside. The person that just came on knew nothing about what had happened early which upsets me some. She should have been told. She said it was about time for his night meds which she usually puts in ice cream which he eats. She said she has never had trouble with him coming in. Not sure who she is -she said she usually works nights which is probably why I have not seen her.
Then I left my SeaHawks insulated glass in the bathroom where the meeting was, so will have to go back in the morning to pick it up. :-(
Well found out why my left leg/hip hurts so bad - x-rays suggest the nerve is being compressed between L4-L5. Need MRI to confirm. It is so painful by the end of the day I can barely make it up and down the stairs to take the dog out.
Need to get my back side moving to get ready for winter. It is sunny and 70 today - yahoo, can have the door open! Tomorrow is cooling down with highs near 60 and lows in low 40s. Snow is forecast to 2000 ft.
Mainly I need to get the heat tape back on the hose. That takes a while because it is a 25 ft hose - the heat tape I have I think is 30 ft which is why I don't make it shorter. It involves wrapping in foil then taping the heat tape down one side. The thinking behind the foil they say is that the heat will radiate more around the hose instead of just one side cutting down chances of the heat tape melting the hose. The put that pipe foam strips over it and tape it all up. I am going to leave the water filter on this winter so will change the way the heat tape goes on a little. I also need to buy a piece of plywood for the porch - we have used the deck part of it for over 10 years- it is getting a little soft. I just need to do it and stop procrastinating!
Art is doing OK. I have not been since Tuesday - just can't bring myself to go. He only lost a pound this last week despite him refusing to eat or drink that one day cause he was angry about something.