This discussion is for those of you who are still "lurking" but not posting right now. You may be a widow, or a widower who reads occasionally to see how the rest of us are doing and if you can help us; you may be so bogged down in your life that you feel you don't have any words to offer; you may not feel you have anything to say......or want to share....all of this is okay....
HOWEVER, those of us who have been here a long time now, and have seen so many lose their spouses, and have seen so many friends stop posting and we don't know why - did your spouse pass away? did you have surgery? did you have to place your spouse and feel you have nothing to contribute? There are thousands of reasons....for not posting...
WE STILL CARE ABOUT YOU AND WOULD LIKE TO KNOW THAT YOU ARE OKAY!!!! Please just take a moment to put your name on this discussion. You don't have to say anything but "Hello" - but we'll know you are around and reading us.... if you WANT to say more - such as I'm okay, or I had surgery, or I had to place my husband, or my spouse passed away on ____ date, or whatever your situation, we would appreciate it.
We love all of our "family" here...whether active or not!
Me too. A good idea Mary. It has been 6 months since my dh passed from Parkenism with both AD and VD. I am doing fine and beginning volunteer work and getting my new life on some sort of schedule. It still feels unreal to get in the car of a morning and head out with no where to go or no schedule. It is also just me rattling around in my big house. The silence is deafening. I find I enjoy using my bedroom as my "command post". Being alone again is a big adjustment but I intend to enjoy the life I still have. Take care all and there is "life after". Just reinvent yourself.
It is heartwarming to know that we care and are concerned about those who have not written. What you do not know about are the personal e-mails I receive from those whose spouse's have died or those who no longer wish to write. They are written to me personally, and as you know, I am a stickler for privacy, so I do not share e-mails unless specifically asked to do so. In most cases, widows and widowers eventually move on out into the non-Alzheimer world and make new lives. They do not forget their caregiving days or the friends they made during that time, and I have been thanked by many for providing the website and support when they needed it, but they are now ready to move on.
In some cases, people have written once or twice when they were desperate for support or information, and then felt they got what they needed at the time and did not need to continue writing. In some cases, I have been told that they stopped writing because they were getting too consumed in Alzheimer's Disease and needed a break. In some cases, I have been told that they may have written a few times, but were too overwhelmed with all of it to come back. They did not want to think about it.
In a lot of cases, some people are just too busy caregiving to get online.
Please be assured that your friendship, support, and help has been greatly appreciated by all who have written, whether it was for a day, a month, or a year. I have countless e-mails that attest to it.
For those of you who remember me....Bryan is in a residential care home now. I just moved him to a new one on Tuesday because of problems at the one he was at. The care they were providing was not adequate. So now we are in a transition stage again. Bryan continues his decline. He can no longer feed himself or walk. He can still speak, knows who I am, and tries to be friendly. He has lost a lot of weight and is very emaciated. As his world gets smaller, little things are all I can do for him. A smile, a handsqueeze, clean clothes, a comfortable chair, nice lotion. But maybe in the big scheme of thins, it's the little gestures that add up? I hope so.
I still read a lot, but don't post that often. This is a very large group and there are lots of helpers who mostly say what I would have said.
My husband is in a period of fast decline. He was on a very long, mostly stable plateau until last September. In the last couple of months the decline has been accelerating. He is now a solid stage 6. I've been working with his doctor for a little over a month now as we add anti-anxiety medications, and that has been working. But the decline is moving so quickly that I find myself wondering just how much worse it would have been if he hadn't already been on some anti-anxiety medications. Should have gotten him on them a year ago.
So good to hear from you all, I hope more post. Lois mentioned reinventing herself. I am reading that book, "Reiventing Yourself". It is interesting. Trying to get my back healed and I found a spot at a local community center in the next town over that needs volunteers to answer the phone on Thurs and Fri. I may do that a couple hours a week. Just to give me a reason to get out of the house.
I hope more of our friends here keep posting their updates, Thanks for starting this Mary!
I'm still here. My wife died in Feb 2009. There's really no reason for me to stay, but I can't seem to leave. The people here were integral in day to day survival. It's still like Vietnam, which I seem to be mentally visiting more often (sometimes on purpose, sometimes not). It is hard to see new guys come in, not knowing anything about what's coming. then realization, then acceptance, then live one more day; then survival guilt, again. Logical-self knows that's crap, but you feel like you feel. Some days are sunshine and blue skies; some days it rains.
My DH has been really declining too over the past 6 months. He was diagnosed about 3 years ago (he is 57.) We are going to FL with one of his sons in July and to Hawaii in September - hopefully I'll be able to handle these vacations. Traveling with him has become a chore. I want him to spend as much time with family now as he can, but not sure they understand he is declining like he is as they don't see him every day and he is still able to carry on a conversation on the phone (actually he just says "uh huh" while they talk so they think he is having a conversation.) I get a little scared when I think of where we'll be in a year from now. I am working a full time job (3 days from home, 2 days in office - DH still able to stay by himself those 2 days but don't know for how long), I run a gift basket business from my house and I take care of DH and all the household chores, etc. I am exhausted!!! Some days I'd like to be like Michael Jackson and take whatever anesthesia drug he was on so I could have a really good night's sleep.... (just kidding.)
I still read all the time. It has now been 3 months since I had to place my wife in a home. Have taken her to the Doc 4 times to try and find a medication that will get her under control. She has been taking out her anger on the nurses and its getting kinda old. We are now trying Risperdahl. She still will hardly eat and is down to 90 lbs. Still sleeping hit and miss. She can't talk. She basically wanders around the home all day. Luckily, no more falls. A week from today is 3 yrs since diagnosis.
I am still looking for work and will likely have to leave the area to find anything. I don't think that is an issue since DW doesn't seem to know me anyway.
Good to hear from all of you. So sorry, Thenneck. I sure hope the Risperdal helps (it worked for us). It's also good to hear that many of those who don't post are still with us, reading.
its nice to hear from all of you again lurking or infrequent postings. i think i will be the same way of having a hard time leaving here 'after'. divvi
It has been very hard for me to get on this site lately but I do appreciate everyone here. I lost my husband late January and it still doesn't seem real. I am getting grief support and trying to move forward in the non AD world. But sometimes getting back into it seems more comfortable than being on my own. My husband tailspinned into a decline after he went into our hospice home for medication changes. Not due to changes in medication, but entering his last days living with AD. He fought like the warrior I knew him to be to the end. So now there is the business of living in a subnormal world, with tremendous differences from what I remember of the normal world. My heart and prayers go out to all of you here. I know I will be ok in time and this time in my life will one day be the past and not the present. So grateful God gave us a last dance and that I now have that bright star in the heavenlies. Much love to all.
I can't thank those of you who have lost your LO enough for staying with us who are in the midst of this terrible journey. It is you who give us hope when things get really rough and give us hope once our LO is free of the disease... I can't imagine how hard it is going to be without him. Right now it is hard with all I have to do that used to be his territory. But not having him here would be worse.
Sweet Pea here; Just a note to let you know I am doing pretty good since my Son and family moved in with us. I have managed to get a lot of chores done [with their help] that I would not have been able to do. God does answer prayers! DH has not been bothered by their being here. The 8 year old GGD knows he is "sick" but still talks to him {when he willl listen] and gives him a good-night hug. I still go to a Support Group once a month but I get more help and support from this site. DH is declining at a "slow" rate so guess you could say we are doing OK. Thank you Joan for the site. I continue to read it almost daily. Best Wishes to everyone. Sweet Pea
Grandchildren can be so special for them. Maybe it is because they are going back to children they can relate. I know my hb lights up when our almost 2 year old shows up. He can only handle about 30 minutes of his business, but he loves it. And my hb is still in stage 4. If you think about it, there has always been a special bond between children and older folks that doesn't exist with their parents. I know I only had a grandmother so we adopted the elderly in our neighborhood and they enriched our lives so much.
Sweet Pea so happy of the blessing you are seeing with your son and his family there.
Dazed reporting in here. I seldom post but read the boards every chance I get. I've been upset about DH's decline on the MMSE by 6 points but was reassured by Sunshyne that the MMSE is NOT a guage of their decline. He's doing pretty well and I don't know if I even want him to have another MMSE. A big thank you to the ones who post regularly. It helps to know what others are going through and how you handle the things that come up. I've had some bad crying spells but found out yesterday that I have a UTI. I think that's the reason I've not been coping very well.
dazed..The brilliant neurologists who invented the MMSE are really proud of themselves....I have given the test to my dw regularly, and I am simply amazed that such a trivial test is still being used to judge alz... My dw scored a 14 in 2006, and has pretty much stayed in that range, despite other obvious areas of decline. I think it is such a ridiculous test, and no one should be putting much credence in it.// A better test would be to ask name, address, phone number, day of week, year, how old are you, what planet are we on, what is the actual percentage that your insurance covers, what tier is medication, how much oil is leaking into the gulf...
I totally agree with you, phranque. DH has only had one MMSE. His PCP sees him every three months, and just "talks" to him, asks what he had for breakfast, how is his son and where does he live now, how long we've been married, how old he is, and mainly just ordinary things. I'm in the room and it gives me a better idea of how is also, since almost the same questions were asked 3 months ago.
Kitty, where are you? Find myself wondering if you're still living in the same apartment, how your husband is, did you find a job you like? Hope you let us know. We all miss you.
In all my neurological experience, I have designed the new MMSE test, which is more accurate and produces better results for caregivers, and it is very easy to administer.
a. pick a number between 8 and 29.
If you get an answer, then that is the mmse score/ If the range is not between 8-29, then you have significant cognitive impairment. If you do not get an answer that fits into this range, again there is significant cognitive impairment.
An even better test is: a. If you have to administer the test, then there is some impairment. Refer to instructions above.
Phranque, I could not agree more and the variety of the test that was given to my DH was just as you suggested...date, month, year, who is the President,,and before this one back to the days of Reagan, who is Sec of State, count back by 7 from 100, define an expression " people who live in glass houses shouldn't throw stones", what is a person who does one thing and then critizes another for the same thing, and what were the words I wanted you to remember were some of the questions our neurologist asked. He tailors his questions to the person's level of education and personal world or history. In our case, my husband was a jet jockey ( flew A4 Skyhawks among other aircraft) has a degree in geology and a Masters in Education.
And don't forget ...Spell WORLD backwards. I've done that so many times, I believe I could do it under anesthesia. Who knows, someday I may write, "It's a Small DLROW After All..."
I enjoy reading everything....even if it doesn't currently apply to my situation. Always good to know what to expect, how to handle it and how people cope. Thanks for this wonderful insightful site to visit.
I'm not saying when this happened so as not to be political . . . once when my mother, who did not have dementia, was coming out from under anesthetic, she was asked, "Do you know who the president its?" Her reply, "yes, unfortunately!" I plan to use this myself someday.
I usually never remember the three words. I have always enjoyed math and multi-tasking. But remembering the three or four words - well, the task that follow are more important and my mind is always busy paying attention to what he is saying. So, remembering the words, unless they are relevant to what is going on, forget worrying about remembering.
Mary75, thanks for asking. I made my 3rd move in less than a year into my rental house June 2nd. Lots of stress. My tenants left it in pretty bad shape, so I am spending a lot of time just getting it functional again, and sometimes I just feel overwhelmed. My h came over last Friday to help with a few things, he seems to be holding his own. The only clue I had was that he took photos of the damage to the house, went home, put them on his computer & called to tell me they didn't turn out. (??????) I am working part time selling furniture, but really need full time with benefits. I can only do but so much at a time, & will feel better once the plumber installs new bathroom fixtures/toilet, and the cleaning crew comes to remove the grease & cigarrete smoke from the kitchen. The pale ivory walls are now brown in the kitchen. The whole interior needs to be painted, but if I can get the kitchen clean, at least I can unpack the kitchen stuff. The only thing I've unpacked are my clothes, toiltries, & makeup. Just enough to allow me to get to work.
I "lurk" on this site about every 3 days to keep up with everyone. Love to you all! ♥
With that much smoke, make sure they seal the walls before painting or with a paint that seals. Smoke smell will come right thru regular paint. That smell is unbelievable- like mold hard to get rid of.
I've missed you too, Kitty. Good to know you're still with us. I have to check in also, even if I don't post. It's hard to be away from our friends, isn't it?
kitty i am glad you are back in your old place. it may take time to get it back to the way you like but the effort will be worth it! glad you checked in. glad to hear you are ok divvi
Thanks divvi!!!!!! Soaked the sheer curtains on the French doors in Oxyclean today. They were BROWN. Came out a sparkling white. That was uplifting. Thought I was going to have to pitch them. Each day I make a little progress.
Great news, Kitty, all sounds great. Yes, Oxyclean does perform miracles. I really like the idea of you being back in your own house and at a job where you're sure to shine and go on to full time if not there, somewhere else that will use your talents. Best of Irish luck!
Hello all. I'm still lurking here. Five years since EOAD diagnosis and DW is still able to dress and toilet without assistance. No noticeable physical disability so far. Shadows me constantly all day long. Medications SEROQUEL (300mg) and CLONAZEPAM (0.5mg) help her sleep at night and take the edge off her agitation and O/C behavior. Thanks, Joan, and all those who provide support here.
Well, I think it has come down to making a very hard choice. DH was hospitalized yesterday. Spent 12 hours in ER and found out at 10pm that he was being admitted. Stones, very very small 2mm which could be passed, however the right kidney was grossly enlarged and they could see fluid around the kidney. Had a procedure done today at 4:00, went in with a scope looking for the stone, which they never found. Scoped the kidney, the utter (I think thats what they called it) the tube which connect the kidney and bladder, showed redness and swelling, but no obstruction was found. A stint was placed etc. DH while coming out from being under, became very angry and started throwing punches at the doctors and nurses, he had to be restrained. Now the hard part........the hospital is willing to work with me getting DH placed. He has to have a hospital stay of at least 3 days and they had already contacted a skilled nursing facility. This is what I've been hoping for for many many months now. Now that the possibility is here, I feel guilty. He may not remember his daughter (whom he lives with) or her future husband, but he still knows who I am better than 50% of the time. I'm second guessing myself again, I don't know if I can do this. Am I doing this for myself or for him? Will this help him or hinder him even more? Am I being selfish because I want a somewhat normal life. How will carry on life without him? I have only days to come to some type of terms with myself, I'm so confused. Rae
Rae Ann - first this is for him. right now you can not care for him at home and it sounds like it will be a while even if you did bring him home. He needs to have meds adjustment to control his agitation and anger. Remember what is repeat here: the average caregiver waits a year too long AND - placement is for the caregiver, not the spouse. I think it is for the spouse too as they get the 24/7 care they need and you become the more of a wife again. Take heart to what others have said after placing: not having the 24/7 caregiving they now feel love and compassion for their spouse. I can see where that is true.
Stop beating yourself up - the doctor/hospital thinks it is needed too.
Rae Ann, you said it yourself. This is what you've been hoping for. Don't back out now. I know what you mean and I'm afraid I'd have the same qualms as you do but I hope I'll have the strength to carry through: so my advice is: take this opportunity.
nothing is written in stone. let them get him settled in and meds adjusted then you can debate your actions whether to leave him or bring him home. in the meantime let others tend to his critical care and get some needed rest. things will look better once you are rested and revived. take care. divvi