Well, here I am in my own little space. The way I'm feeling today, it won't be little for long. I'm here for advice, chewing out (I can take it) or just a little holding onto when you feel like it. I have information and compassion, too, if anyone is inclined to bend my ear, once in a while. Jen.
Hey, I'm here ...Vent all you want...I'm venting today. Groceries are running low and I know the time has come that I can't leave him alone at home. He is not able to make the trip with me. What to do....my mind is blank and cannot seem to find a solution to the problem. Tomorrow is another day and I will get off my duff and do what I have to do.
Bama.....I AM GOING TO THE STORE ALONE. THERE. To hell with this. All he's gonna do is sleep. And moan. He has what he needs by his bed. The guest toilet is right across the hall. His walker is beside him. His bed is very low. I HAVE TO BE ABLE TO FUNCTION.....AND THERE IS NO ONE HERE TO HELP ME. #&#% IT! (OH, SORRY....too much time on the phone with my daughter...where'd she learn that language???). Yes, I've been told I shouldn't leave him alone, but I FOR ONE seem to be living in the REAL world. One of the health care workers that pop over every day told me the same thing......sometimes you have to do what you have to do. AND, I'm going to my women's issues group today, too, ALONE. NOT dragging him out of bed to wash, shave, shove into the car and have him in the waiting room cursing and being an ass.....or, sometimes he just flirts with the nurses which is okay with me. That's a GOOD day. There is NO FOOD here. I need to go by the health food store, too and get him some of those energy drinks and food bars (lots of calories and protien). I've never been one for buying 'junk' food and everything I have has to be prepared. TODAY I'm going to buy LOTS of frozen dinners. No inclination lately to cook....garden going wasted, except for the tomatoes. I can LIVE off those. I wanna sit with you all and talk face to face so no one misunderstands my quirky little phrases I use.....like "nuff said", "yeah,yeah, yeah" and "whatever". I want to cry and be held. I want my children to understand and offer to come give me a break. WANT, WANT, WANT, same as everyone here. WHEN IS ENOUGH, ENOUGH?????? If I had the money, John would be in a very nice eldervillage like the one they're building in town. I couldl be sane again, my burdens would be lifted. I for one, canNOT bellieve that many of us are keeping our husbands and wives here with us for the LOVE we bear for them.....isn't that an awfull thing to say out loud??? John's here because I dragged him out of a nursing home in FL where I thought he was languishing....thought he'd be better off here. Having only his voice over the phone for almost a year and some months made me fall in love all over again....but it's the SAME. NOTHING. No progress, and I imagined I could make it better for him, if he just had someone who would take care of him.....that's what my children and his sister told me, too. I let myself believe it. John is here because I simply can't afford the price and he isn't yet qualified for Medicaid....still some things to be done, some financials to be adjusted. Complications.
I thought hospice was for people with only a few months to live.....that's what I was told when dealing with a friend who passed this past year from lung cancer.
And, evaluate WHAT? That he sleeps all day, is uncooperative and has Alzhiemers??? I know that. And, I don't want anyone else (ANOTHER agency) telling me I can't go outside! 24/7!
Call hospice anyway, it's not always just for those in the end stages. Worst can happen is they'll say 'no.' I know others have said they helped, maybe someone will post about it.
Jen, Hospice and doctors cannot say when they are going to die. Hospice is signed on for six months at a time, then they re-evaluate. Don't think for them. Ask for an evaluation - let them come by - and go from there. Who knows what they will say. Considering the fact that your DH weighs 110 and is in his 80's, is in an advanced stage of AD, and, and, and, ***, just might qualify him. Isn't it odd how we don't want to think we're at that stage! You're not, Joan is not, but recently, I told someone that only older people live in Independent Care Faciities...and I'm 70. Whaaat? When did that happen???? We laughed and laughed at me saying only older people live there. duh, Nancy!
The evaluation would be to see if he is far enough into az that he cannot take care of his needs, and that his needs are too much for you to take care of. Everyone with az is dying, so they will all qualify for help from hospice at some point, and not just because they are dying soon. That would be impossible for anyome to say, noone knows when they are going to die, but hospice can definitely tell when they cannot do for themselves, and the job is impossible for someone else to do and take care of themselves and go through the motions of living their life too. Hospice is paid by medicare so that everyone doesn't "have" to go to a nursing home. With their help, it allows patients that have no other problems to stay home as long as they can. It can be in home care or care at their hospice house. You will love and appreciate their help. Don't hesitate to ask them to come out for a consultation.
Jen, I’m too lazy to try to track down the particular threads right now, but some months ago there was considerable discussion about the need to begin trying to detach emotionally from our terminally ill ADLOs for our own long term well being, and I expect most of us on this forum have succeeded in doing that to one degree or another. But I don’t believe you’ve done that. You said, on another thread:
<<I want my husband to be able to take walks with me, too. I want him to watch a movie with me, go shopping or the farmers market. Hang out at the stock sales with me like we used to do. Paint with his watercolours while I sculpt in silence for the whole day long like we used to. Go to the garden center with me and pick out two bushes I need to replace two that died in an ice storm this winter. ANYTHING.>>
Yes, of course, we’d all like to be able to turn back the clock to happier times, but the reality is that we’re dealing with very compromised loved ones here, and turning back the clock just isn’t going to happen -- and the quicker we accept that and start distancing ourselves and building emotional walls between ourselves and the sick folks who formerly played such vital roles in our happiness, the healthier we’ll be. Got to “take care of the quarterback”, as Coach Frank Broyles keeps reminding us!
Despite loving my wife dearly for all the wonderful history we share, I have, in effect, been able to “write her off” insofar as being a very significant positive factor in any future enjoyment and happiness that may come my way. I now love her for what was – not what is. I find no pleasure (satisfaction maybe, but not pleasure) in the daily grind and unpleasantness and sameness and loneliness of caring for her -- but I do it because it’s the right and decent thing to do, and I couldn’t live with myself if I did less than this. I’m not afraid or ashamed to say that I’ll be glad when this journey is over – for her sake and mine – because I don’t expect she’s enjoying this journey any more than I. At this point she’s probably sleeping twenty hours a day, being helped to and from the potty (or showered, or helped with tooth brushing, or whatever) maybe two more hours, being urged to eat (or actually being spoon fed) possibly one hour, and, if we’re lucky, maybe one hour of more or less pleasant social interaction – singing together, or reminding her about things we used to do, or answering repetitive questions about how old we both are, what my name is, where do I live, the color of my eyes, or whatever – none of it amounting to a hill of beans, really, but it’s scant evidence that at least “she’s still in there” to some degree – and, presumably, those few moments may actually still be pleasurable for her. So we keep trying, but with awareness and acceptance that it’s a downhill slope.
Jen, I think you need to accept that John is a very old and compromised individual (God, I hate referring to him as OLD when he’s a year younger than I am!), and he isn’t realistically ever going to be the partner you remember and wish for, so I’d urge you to start building that wall and distancing yourself from him emotionally. Do whatever your sense of love or duty or decency require of you insofar as to seeing to his care, but as soon as you’ve got all the legalities sorted out as suggested to you by your elder law attorney, I’d really suggest you start looking for ways to reduce his dependence on you – either by getting some help (yes, hospice would be good to explore!) or placing him – so you can make a start on getting on with your sculpting or education or whatever you think represents a “future” for YOU.
Gourdchipper...I was just going to post exactly the same thing you just said, except you said it better than me...Stuntgirl-there are many things we all wish we could do with our LO's, but those days are gone forever. Listen to gourdchipper- the man has not flipped his gourd...he is dead on accurate and totally honest. He speaks well of the progression of the disease, and we caregivers need to separate ourselves emotionally, but not physically...Take his advice Jen
This is what I wrote 5 hours ago, just as my Internet went down, so it never got posted:
I don't know if you have done this yet, but I would strongly suggest that you log onto the home page - www.thealzheimerspouse.com - and look on the left side of the page - scroll down and click on "Understanding the Dementia Experience". It is the one with the picture of the woman wearing the life jacket. I think, and I could be wrong, but I think that a lot of your frustration comes from not really understanding what Alzheimer's Disease is and the behaviors associated with it. That article is the best I have ever read about Alzheimer's Disease. It helped me tremendously. You cannot expect him to do or be what he will never again be able to do or be, and you are only going to make yourself sick by trying. I know. I tried. It can't be done. The only way you will ever have any peace is to accept what dementia is. Please read the article.
Jen, Gourdchipper has said it all. Accepting the reality of what is has to be the most difficult thing to do emotionally. We all keep that one little spot in the back of our hearts for "the miracle" even though the odds are against us. Give both of you some peace and accept who he is and call hospice. You may find the answer to your prayers. Good luck.
joang....it doesn't help that the caregivers that the hospital sends to my house seem to paint a picture of "if we do this for him" and "if we can get him to do this", then he can be better like his old self.
Gc..you are the man. My thoughts exactly, but I could never have expressed them so truthfully and eloquently. I have done what you have done. It's hard to do, but if you are to survive at all, we all have to do it. And survival is the nature of mankind.
<<it doesn't help that the caregivers that the hospital sends to my house seem to paint a picture of "if we do this for him" and "if we can get him to do this", then he can be better like his old self. >>
Jen, how about you print up some business cards that say:
"Go sh** in your hat -- he has Alzheimer's, for Christ's sake!"
Hi Jen, I too agree with everything GC said,...as hard as it is to admit. I know I have begun the Emotional Divorce from my husband..rather, I guess I am already there. (GC, that was the subject of the discussion). It's been written about in publications and often discussed in care groups.
Re: church. I believe you are also Episcopalian, are you not. We are brought communion once a month by a Eucharistic Minister an every week, I have my Stephens Minister call on me here. A wonderful relief for me and she is a joy to have around. I always feel better after her visit. Talk to your priest about arranging the same for you all. I can also get the sermons on line weekly. Have you checked on that? I am talking about this (everyone!) because Jen has often said how much she misses going to church. I'm not getting into "religion", but rather, addressing one of her stated needs.
Yesterday a retired Two Star AF General toured our home with his wife and brother. The brother is interested in buying it. The general has lived with Alzheimers' for four years. I saw her doing the same things with and for him that I do for mine.
Funniest thing was the way he and my husband interacted. Like two happy kids. We thought it would be fun to schedule a "play date" for them. They were animated and praising Reagan together and cursing the economy with bad words. Their kind of "play".
It was amazing to watch them interact, both being about the same chronological age and behaving the same AD age they share.
Wierd thing....some of my posts are being lost!!!! I have stuff to say but it doesn't get out there! LOST! Anyhow, one of the last things I had to say (to gourdchipper) was not to tell me stuff like that.....lately I'm likely to do JUST THAT! And, I can say "that word" very easily lately....and in such a sweet way. (maybe I just THINK I'm hitting the ADD button and I'm not, really)
Oh....since this is my own thread....an update on what happened with my day. I worked with my ponies (gave John his lunch), went to my doctor's appointment (while dinner was in the oven) then did my grocery shopping....went to hardware store on way home. Served John dinner. Each time, had to wake him up. I swear, I don't think the man MOVED the whole time. Alls fine, after all. JUST HAD TO GET THINGS DONE. Now, I'm going to go get a bath, put on some perfume (I BOUGHT SOME!) and cuddle up in bed ....... with my stupid cat.
Gourdchipper and all you darlin' guys!!!!!!! YES, it's White Shoulders and Chloe. Sometimes Shalimar. Chanel #5 when I feel nostalgic!!! I remember my first cologne when I was a girl was Heaven Scent! That REALLY brings back memories!
GC, I must add my thumbs up to your post. The bottom line is we have to recognize what is, is; and there's no retreat in the journey. Acceptance and wall building is necessary for peace of mind; there's no victory in battling windmills. Listen to the chipper.
White Shoulders reminds me of my high school years, proms and corsages. I'm a Prada Infusion d'Iris gal myself. Clean soft fragrance that smells heavenly!
Jen,. re: the OT/PT's you have had. One person (??) advised me to tell the agency to only send out therapists who had worked with Alzheimer's Patients before, because their input would be totally different than the others who had no training or experience with Alz. people. Our PT was incredible. He worked with one man who had not spoken a word for several years, but after a few visits he would greet the PT and during exercises, he would "count" with him. The family was astounded!
Nancy B....that's a good suggesstion and one I will talk about when they resume sending out the help. Today, (in a few minutes) I get to rouse John out of the bed and get him dressed and fed. Has to go to the hospital for a transfusion. Has some kind of wierd anemia. What causes THAT? How do you loose red blood cells....to THAT extent? I'll let ya know what I find out later. Jen.
Jen, my 38 year old daughter in law has a type of anemia that she has to have tranfusions about twice a year, along with special iron vitamins, dietary supplements, etc. She feels so much better after each transfusion. I can usually tell when she is "running low"....and sure enough, she returns to the Hemotologist and she gets a refill! It's not just for older people. She's had this since her 20's. She craves crushed ice, which I didn't realize is a common thing among people with anemia. Crunch crunch... we give her so much grief over her crunching ice all day long. It's so aggravating to hear, but we know it's something she cannot help.
I'm picking John up in an hour....boy, I hope this mlakes him feel better. Is it because their body doesn't make enough red cells? And why? Do you know? Man, this sounds DEADLY if someone's not watching for the symptoms! Haven't talked to the Dr...only some nurses today so far. Jen.
Got John home....he had three units of packed cells (bags of blood, to me) and it took SO LONG, poor guy! Six hours! He has to go back each week for three weeks and get a shot of "Aranesp". It is suppossed to make his bone marrow generate new red blood cells faster. That's all I know. Seems like he feels better. I even took him out to Applebee's, his nature was so good.
Yes, but I'm worn out......happy we got to go out to eat. We hadn't planned a trip to the restaurant (course it was only an Applebee's), so I hadn't taken the time to shave him this morning and put nice clothes on him.....yep, he feels better. Wasn't whacking and slamming his walker around in the restaurant and uttering obscenities!!! He's tired from the ordeal, though , so we're headed upstairs early tonight......the sun is still shining, but I'm getting us in our jammies and haulin' it upstairs to be with a movie and my cat! And a couple of ICE COLD diet pepsi's.
Hi Jen, read Lois's (lmohr) post about her DH sleeping all the time. I'm sure you have, but just wanted to reassure you that sleeping is normal for AD patients. The further along they go, the more they sleep, just like little babies. As I said to Lois, maybe they are in a better place when they are asleep and dreaming. Maybe they are more like they used to be when they're asleep and not encumbered by AD. Poor guys.
This is my very own thread, so I think i can say what I feel. THere are some very mean people that have made some quirky remarks about some of my posts. Some of my posts magically disappear after I post them properly. I read them over at least twice to be sure no one can possibly be offended. I'm a nice person and I LIKE WHO I AM even though I'm in this "journey" as some like to call it (I call it HELL), just like you all. I don't know what I've said or done to anyone. I try to have a word of encouragement for everyone, though I don't and can't read every little post here. But, please, if anyone has any difficulties with what I may say and need clarification about any remark I make, can you please e-mail me? I've made my information available, unlike some individuals who understandably want to remain annonymous. (who ARE those people??) If anyone has been reading consistently during these early evening hours, you know what I'm talking about. Thanks for listening. PEACE
John is back to his old self.....I don't mean it in any good way. He seemed better last night when I brought him home, but he didn't stay awake long, but I was encouraged because I was told he'd feel so much better after the transfusions. Was in bed a couple of hours after we got home. Up and down all night, wanting something to eat, like a little kid. I wonder why they want to keep giving him transfusions and all these shots to make his marrow make blood cells. I wonder why I give him medication like Aricept and Namenda. I've accepted that he is going to die....he's a dying man. He is no longer a part of my life and as Gourdchipper has said to me, I need to distance myself and start building a wall. I've built that wall recently. I wonder why I bothered to bring him home except that I know he's happier. He is asleep again. I am going to stop trying to bring him down the stairs anymore to be part of the world. He will never be better. If it were me, I'd want to go to sleep, too, and not wake up. He only gets up to go to the bathroom or if I make him come into the bathroom to bathe and shower and brush his teeth. He fights that. I'm not taking him back to the dentist to have the rest of his teeth cleaned......almost $300 and they were only able to do a quarter of his mouth because he acted like an infant. He's just a body upstairs that has some basic needs to be met. When we go to the doctors, he can really pull it together and no one would know he's the way he is here. He can really be quite charming there. At home, he moans and yells and cries from some sort of 'pain', but when I mention it at the doc's office, NOPE, I am lying. He feels fine. Will it be like this at the neurologist's appointment? I wonder if I should call the psychiatrist's office and make an appointment for an evaluation there? And, what would the point in that be? More tests to tell me he has ALZ, I know, but maybe more affirmation for me and more of a clue to his other providers as to what's really going on? There's no one else for me to talk to but the people on this board. If I go to the agency in town, I'd have to go alone....then they'd probably report me to APS for leaving John alone (it's almost impossible lately for me to get him to go somewhere, I get so upset in the process, too). Lately, I do leave him alone...to run up the road to do real grocery shopping, to pick up bread or milk. It takes no longer than my being outdoors in the barn or doing some other duty here. I CAN NOT LIVE THE REST OF MY LIFE INSIDE THIS HOUSE WITH A BABY MONITOR ON MY BELT! So, I go on about my business, almost as usual, to save my sanity. I wish this would end.
cs has said that I shouldn't post anymore but I had to talk about John in my previous missive. cs.....In light of what has been going on with someone who obviously dislikes me and has no respect for me, I really don't know how to take that. I'll e-mail you later to understand fully, and I hope you'll respond. I DO feel persecuted and dont understand what I've said or done to alienate anyone here. I don't have the family and friends you all (MOST of you) have to see me through this. I am not ready to place John. I know it would break his heart (he still knows me and that this is home) and I've already had unbeleivable trouble with his family over that manner of thought. I have enormous financial ailments that I don't know how to resolve. Every day is some new personal challenge that I don't speak of. All I know is that I am alone, completely. It is rare when I have visitors or any interactment with other adults. That's why I speak of wanting to be with someone special, someone I care about, because I miss that. If any one here says they don't feel the same way while loosing their partner and having no family and friends, then they are lying or dumb as dirt! On other threads (the "dreams" thread, for example), my comments have been wiped off because I've said that. Then someone else made a terse comment that this isn't a dating site. HOW misunderstood. AND cruel. Guess I shouldln't have responded, but I did it in the kindest manner that I could manage....that person had no e-mail to contact her (?) at. Comments wiped off. It's happened on other threads, too.....almosst as if I were being followed around, each time the same person making personal remarks about my posts. You are right on, cs. This was, I thought, a FORUM for comments and concerns, information, venting and support for people like you and I . Apparently, this is a waste of time. I'm better off blogging into space to myself on some empty site, like MySpace or other. Thanks for the advice. Joang, you can wipe off this thread now. You see, no one will respond to anything I have to say or offer. It is useless to me. Thanks for your efforts, though.