I don't post a lot about what's going on in my life, because so many of you have it so much worse than I do, that I feel like I'm whining. But I've had what for me was an awful week. I've been crying or on the verge of crying most of the week.
My sister, who is 59 years old, fell in September and cut an artery, a nerve, and a tendon in her ankle. She managed to call 911 and get to the hospital, where she went into septic shock. She is divorced and has no children. My brother and I are the closest relatives, and my brother doesn't do anything for anyone else. At one point things looked so bad that I told the doctors to quit treating her. The sepsis was causing all of her organs to shut down, and the doctor thought she had severe brain damage. After 3 days of our anticipating her death, she came out of it. She was in the hospital for a month and in a nursing home for 2 months. Both were 50 miles from here. Her house was filthy and in really bad shape. There were cat and dog feces all over the house. The smell was unbearable. There were fleas and also mouse droppings. The bathroom and some of the other walls were covered with mold. Things were scattered all over the place, including a lot of fast food containers with left-overs in them. In addition, she had a mortgage, a car loan, and about $12,000 in credit card debt. There was no savings except for some money in a 457 fund, which rapidly dropped to about $25,000. I've worked at dealing with all of this mess. My sister is now in an assisted living facility nearer where we live. She has a brace on her leg and is able to walk. I'm not sure about her mental capacity. All she does with me is complain about everything, and I mean everything, and hand me stuff to take care of for her. She only has enough money to stay where she is for about a year. Her boss called this week and told her that if she wasn't coming back soon, she had to either resign or retire. Her retirement right now would be less than she's getting in disability from her job. She also can stay on disability until she's 65, but she gets upset easily, so when the boss called, she called me and complained. She did settle down when I told her that what the boss said was not true. (more in next post).
My husband has (according to his tests) amnestic MCI. I think he is further along than that. I told you earlier that we were thinking about putting in a fence. The covenants here say it has to be 6 inches inside the lot line. He's been yelling and swearing about that for two weeks. He wants it on the lot line so the grass doesn't have to be mowed on the other side. I don't think he's going to be mowing the grass much longer, anyway, and I'm really tired of listening to the ranting about it.
In addition to the MCI, he has something that is causing him to ache all over and be very stiff. This last week he's been moaning every time he moved. His primary care physician thought it was polymyalgia rheumatica, put him on prednisone, and sent him to a rheumatologist, who also thought it was PMR. However, if it was, the prednisone should have stopped the aching and stiffness in 2 or 3 days, but it didn't. It helped some, but not as much as it should have. The rheumatologist has been weaning him off it gradually, so she can run other tests, so he aches more every time he decreases the dose. Wednesday, I had a badly needed appointment with my therapist. He had called the rheumatologist's office earlier in the week. Tuesday, they called back and said he could get in to see her at the same time as my therapy appointment. I was disappointed that I couldn't make my appointment, but I called and changed it. Then he got mad and started screaming and swearing at me. He could go to the doctor by himself, he didn't need me, he wasn't a baby, and if he was going to be treated like one, he might as well "blow his brains out." He called me every name in the book - ones he would never have used before the MCI. This was in the afternoon. I had spent the morning listening to my sister complain, because she was probably going to be late to lunch and wouldn't get a salad and then because she wanted to go shopping and although the people at the assisted living facility would take her, they probably would insist on staying with her and wouldn't just drop her off and let her stay longer than just an hour.
When we went to the rheumatologist, she said she was sure my husband doesn't have PMR, but she doesn't know what he is aching and stiff. She set up appointments for him to get more blood work, a chest x-ray, a complete body CAT scan, and a bone scan. She's thinking it might be cancer. All four of his sisters and his mother had cancer. His mother and two sisters died of it. The fact that he smoked for 30 years only adds to the risk.
I'm exhausted, upset, and terrified about the possibility that he has lung cancer or some other kind of cancer. Now I'm crying again. Time to get ready for church. Sorry this is so long. I do know that none of this is as bad as what many of you have to cope with, and I'm not coping well. I have an appointment with a psychiatrist to talk about changing my anti-depressant.
This is exactly what I referred to in another post - None of us knows what else others may be dealing with in addition to their spouse's Alzheimer's Disease. You have MORE than enough on your plate, and you NEED to vent and let it all out.
I have no answers for you, just a listening ear and hugs to let you know that we understand the stress you are under. I do hope a change in medication can help you cope.
Janet, you sure do have an awful lot to handle. Please try to take care of yourself. Can your sister go on Medicaid? That would help there. I'm so sorry all this is on your shoulders.
Janet, here is a super big hug for you! (((((((HHHUUUGGG)))))))
I will offer a little advice - You need to mentally build rooms in your mind - one for your sister, where you can close that door and only open it when you have to deal with her. If you have caller ID, only answer it when you can take time to open that door. One room for your husband's health issues. You need to schedule his appointments and not allow yourself think about the possible outcome of the tests. It isn't going to be good, but may not be as bad as you are afraid it might be, so put it in a room and close the door until the results come back. Now the last room is a spa for you. You go in there, have a massage, a manicure, pedicure, shampoo and set. Read a book on a chaise lounge with a glass of wine afterwards (if you so indulge). I do this mentally when my knot at the end of my rope gets to frail to hold me. It does help me...so I'm sharing with you!!! I hope it will help you too.
I cant imagine yet the agony and all the mental conjectures that you are experiencing. only relate thru what others here are suffering- i do know that sharing your agony and sadness and allowing us to help you carry that burden will make your load much lighter. yet another hug..divvi
Janet, you certainly have more than one person should have to deal with. First, take a deep breath, then breath again. I really like Mary's idea of the rooms. You can only deal with things under your control. Find time for yourself FIRST!!!! Big Hugs your way and wishes for calmer times. Sue
Oh Janet, I can't imagine! Mary's idea does sound good. I wonder if you could really do that? It sure would be worth a try. Keep coming here. We really care.
Janet, NEVER feel that your problems are insignifcant! If they are enough to be bothering you than they are enough! We are all here for you. There is an anti-depressant that helps with anxiety also, Effexor XR. Glad you are seeing a doc for yourself. We caregivers often forget to take care of ourselves too. Let us know how is all goes, we care.
The rooms in your mind system works. So do the cupboards cabinets and files, I have in mine. These systems empower you. They give you a way to prioritize and a way to focus. Most things have a place and unless they're out for you to act on, they stay where they're stored. New things may not have a place, but what you do with them is identify what they are; can they be dealt with and shipped out?--Do It.; or do they belong in storage?--put them there. Cuts the stress and you're the boss.
Mary and carosi, what did you do in your pre-AD life? Sounds like you know a lot about de-stressing. Now if I can just learn to master what you've said.
I've said on other threads, my handicap made it so I had to learn from the very begionning to think outside the box to get to the "normal goals" in other ways. I was a children's librarian, with all the organizing and filing attached to that. And a stint with a counselor for depression back in the early 90's when dealing with DH's mental Illness (before VaD) polished the skills I figured out.
Janet - after all those test results come back and are negative for cancer (which we pray they are), look into the medications he is on. Read down to the rare side effects. Search online for peoples reactions.
Statin drugs for one will cause the aches, pains, stiffness and even memory problems. Even the alternative of Red Yeast Rice will cause joint pain - which is weird. Must have something to do with the process of ridding the body of cholesterol!
A lot of medications can cause similar symptoms. Read through all the listed side effects. Drug interaction is another possibility. I remember my MIL was a about 10 drugs when she changed doctors cause she was only getting worse. The new doctor took her off everything and waited to see what symptoms she really had that were not drug caused. She ended up on just 2 medications.
While you wait, do as others have suggested - they are good ideas on caring for yourself.
Mary, I like the rooms idea. I'm not sure if I can do it, but I like it. I'm really going to try.
I am taking Effexor XR, and it was working well until I started dealing with my sister. As for my husband, he's not on statins. None of his medication had changed for a couple of years until the aching and stiffness started. I will check the side effects of all of them, though. I think the doctors have looked at that, but I'll do it too just in case. I know he probably doesn't have cancer, but I always assume the worse. S
I've said here before that I tend to want to control things. I want to know what is going to happen so I can plan well in advance what I'm going to do - not working right now! Actually, I don't think it has since my kids were born, and they're now 30 and 36, but I still haven't learned. I'm working on it.
Hi Janet, Wow what a load you have!! I am so sorry you have so much on you but glad you are going to the doctor for some help for anxiety. I am the type too that wants to plan in advance. I think it is normal for us to kick in and want to take charge when our significant other cannot do it anymore. I guess we all struggle with the whats and whens! Take care and keep us posted
Here's my update on the post at the top of this thread. Again, I'm sorry it's so long.
Most importantly, we now know that my husband doesn't have lung cancer. He also doesn't have cancer in his bones, so if he has any other kind of cancer it hasn't spread to his bones. The rheumatologist now thinks that instead of polymyalgia rheumatica, he might have spondyloarthropathy. We haven't talked to the doctor since she concluded this - only to a nurse who said the conclusion was based on a blood test. As far as I can tell from what I read on line, he doesn't really have the symptoms of spondyloarthropathy. Don't you love that word? But he is hurting much worse than he was. He tries to exercise, but he really can't. He's taking piano lessons as recommended by his neurologist, but he's having trouble with that, because his fingers are so stiff. He has an appointment with the rheumatologist tomorrow afternoon. If we don't some sort of reasonable answer tomorrow, I'm going to talk to the doctor about going to Mayo. If Sunshyne is out there, I would really like to know if she has names of doctors at Mayo in Minnesota who are involved in research on autoimmune disorders and dementia. I know she talked to Dr. Caselli at Mayo-Scottsdale and he said there were doctors in Minnesota, but she didn't say who they are.
My sister - I withdrew money from her deferred compensation account to pay off some debts. I did hours of negotiation with her mortgage company and credit card company and got some reductions on some of her debts. Miraculously, the mortgage company agreed to take the house and $2000 and write off the $49,000 she owed on her mortgage. This is miraculous, because the house is only worth about $20,000 given its condition. I thought I was done with most of her past financial problems, but this morning I talked on the phone to my financial advisor for about 90 minutes. He has ideas about saving her money on taxes. Unfortunately, his ideas involve our loaning my sister about $10,000 until early next year. We can do it but I'd rathe not. There are a couple of other ideas he wants to talk about, so I'm spending tomorrow morning in his office. This incredible, wonderful man has already spend at least two days working on her mess and is not charging us anything for his help. But I don't want to spend more time on her finances.
Bob's MCI - I still think he is beyond MCI, but the doctor doesn't. There haven't really been major problems since I posted somewhere about his driving. He is agreeable to my driving right now because he is so stiff that driving is painful. The issue will resurface if the stiffness goes away.
Another issue - I royally messed up our tax return, which I filled out at the last minute. I was a math teacher, and I think I understand what I did wrong, but I have to fix it and file an amended return. I'm going to get help even though it will cost money.
I've been crying all afternoon. I was supposed to go to my Spanish class (which is what I'm doing for fun), but I couldn't stop crying. The crying started when I read the posts on the thread titled something like "sunshyne must be locked in a closet." I don't think they were the real reason for the crying. I think it was everything else and they were the very small last straw. I really wish we could forget all the left-over anger, but I do understand that if everyone is under as much stress as I am, it keeps coming to the surface. A lot of us on both sides of things had hurt feelings but surely it's been long enough that we can let them go and not keep bringing them up.
Janet, I started that thread in fun. Since Mawzy was back, I thought I'd mention that we also miss Sunshyne. Really, the reason she is not posting is because she's in some kind of project or research. I don't think she's away because of anything anyone said. I'm so sorry you're having such a rough time right now and Sunshyne would be the first one to help if she were here.
I know you were kidding when you started the thread. It was some of the other posts that set me off, but I'm not really upset about them now. As I said, I'm just under so much stress that any little thing leads to hurt feelings. Thanks for responding.
A couple of years ago I would have said I couldn't handle all of this either. In fact, I still say it. I'm not sure that I'm doing a very good job, but I'm doing the best I can. You do what you have to do. I know you would too. Thanks for your message. I can use some admiration right now. I don't get a lot of affirmation from my husband (naturally) and even less from my sister. I know that's not surprising, but it sure would feel good to be thanked once in a while.
New vent here - I think I live in "al-righty" land!
My sister's doctor (see first message in this thread) wrote to her employer that she is permanently disabled and will not be able to return to work. As a result, they asked her to resign from her job so that they can fill the position. They will continue to pay her disability until she either retires or reaches the age of 65. Also, she continues to accrue time towards retirement, so the longer she postpones retiring the more she will collect. She thinks she is perfectly capable of doing whatever she wants, but she doesn't want to go back to work. Sunday, apropos of nothing we were talking about, she announced in an angry tone, "Well,that doctor better not change his mind and say I am able to return to work!" Trying to be calm, I asked, "what has he done so far that you would have had him do differently?" Still angrily, she answered, "He won't give me a prescription for Fosamax!" Al-righty then - that explains it. No wonder she thinks he will suddenly decide she isn't disabled.
Switching to my DH - today we have water in our basement in two places. There is a small leak near the pipe that comes in from outside through a hole in the wall to the sump pump. We had heavy rain yesterday and some water came in there. The hole around the pipe needs sealed, and my husband is planning to do that. Wish me luck with that! Second, there is a large pool of water under the water heater in the middle of the basement. My husband thinks there are two possible explanations for the water under the water heater. One, it came from the other leak - even though there is a large dry area between the two wet spots. Second, the water could be because a tube from the air conditioner got plugged with algae (he heard that somewhere). Again, the air conditioner is not anywhere near the water. He strenuously disputes that the water could have come from the water heater and refuses to consider calling a plumber.
My head hurts and I feel as if my world is off-center. I think it's time for a xanax. I'm agree with Susan L. - better living through chemistry!
Janet, this is really weird. My DH has been having more and more of a problem with the achy and stiff joints. This has been getting progressively worse since I have noticed problems 8 to 10 years ago. He has had lyme, thyroid, fibromaliga (SP) and the list goes on ruled out several times. He has been trying to track the problems and is pretty sure it is related to the storm fronts moving in and out. this week, it was really bad. I took his temp last night and the night before while he was so achy and it was 99.6 both times. He feels hot to the touch especially his joint areas, knees, wrists, fingers, etc. His eyes are red and glassy, he gets hot and cold and it can change every few minutes. If he can sleep, it seems to help. We are undiagonised but I'm pretty sure that it if FTD with moods and reasoning. He has all of the symptoms. I posted elsewhere last week that I noticed a big change over the last couple of months in very recent memory. this is the first time that recent memory has been all that noticable. Things like forgetting that he just took his meds. Or that he just checked the TV stations. and something happening at least a couple of time in an hour.
Does your DH have the temp and hot joints when he has this problem? Two nights ago, he actually considered having me take him to the hospital because he felt so bad.
Janet, I had not seen this thread before; what a load you are carrying! Can't help you except to say that I really think you have done a tremendous amount for your sister. Good luck with the leaks. It is really hard to deal with a dh who thinks he is still capable of dealing with stuff like this, when you know for a fact that he is not. How are his aches and stiffness now?
Mary and Jeanette, the aches and stiffness are under control for right now. They were never in his joints, so it was different from what your husband is experiencing, Mary. It was more of a muscle condition. The rheumatologist now thinks he has anklyosing spondylitis. There is a gene associated with it that DH has. He's now taking methotrexate and weaning off prednisone. The two together have controlled the aches.
I just blew up at him, because he went to his piano lesson that is from 3:00 to 3:30 and got home at 5:00. He's still driving, but I wish he weren't. I get worried when he's gone for longer than I expect and I don't know where he is. Foolish me - he was at Menard's looking for stuff to fix the leak in the basement.
Mary has the most wonderful suggestion about the "rooms" in our minds. I've used this a lot in dealing with physical pain issues after giving up the narcotics for dealing with my injuries......Injuries are injuries, body, soul or mind. Yep, gonna try and remember to use that concept, myself! Janet, I hope things work out. Jen.
Janet, DH was sent to a specialist about 6 years ago. This doctor was pretty sure that he had anklyosing spondylitis also but DH did not have the gene you mentioned. DH has the rough skin over the knuckels, pushes himself up to get out of chairs, joints in the lower back/hip area on one side are beginning to show fuseing. At the time, the doctor wanted to do deap-muscel biopsy but DH would not let him. (Sorry for the spelling errors, my computer has problems when I have the spell check loaded, so I can't use it.) DH is also walking tiped to one side. Thank you so much for responding.
As I said, DH has the gene. His aches and stiffness started suddenly in his thighs, hips and shoulders. It was really bad. He had a lot of trouble moving at all. He did have to push himself up from chairs. He doesn't have rough skin over his knuckles (I didn't know that was a symptom). There were no signs of fusing. It was worst in the morning but didn't really wear off during the day as the doctor seemed to expect it to.
Since he's been on methotrexate he's been fine. No more aches and stiffness. My mom used to take methotrexate for severe rheumatoid arthritis. It helped her immensely, but it can also cause liver damage. You have to get frequent blood tests when you take it. I'm not real happy that he has to take it, but it's better than the way he felt before.
I think someone on here said that she has anklyosing spondylitis. Maybe she'll add information.
Mary, Sunshyne did some research about links between autoimmune diseases and alzheimer's. I was going to bring her posts to the top, but they are spread throughout several threads. Do a search for autoimmune and you'll find them.
I'm the one who has anklyosing spondylitis, but at 79, it's beginning to burn itself out. That is, I always have pain and stiffness, but not the acute pain I used to have when I was younger. My rheumatologist won't prescribe the newer drugs for me - she's concerned about secondary infections and liver damage - but I take Tylenol, or Tylenol with Codeine around the clock. About every two weeks, I take the anti-inflammatory Diclofenac, along with a Proton Pump Inhibitor to lessen damage to stomach; might stay on it for 2-3 days, but not longer than 4. I also take 25 mg. Trazodone at bedtime. It helps keep me asleep during the night: one of the symptoms of A.S. is that the pain worsens during the night, so that your sleep is cut short. I find to keep moving is my best defense,that and not letting the pain get out of control. I exercise at the Y 3X weekly, light weights, stretching exercises and water exercises that have been prescribed by a physio. A good physio can help over a bad stretch. Interesting facts about A.S.: it's most common in young men; horses and alligators can have it, too; the severity differs in different people; women usually have a milder form.
Yes, it's carried in a gene. But not everyone with the defective gene develops A.S. It is thought that there is a precipitating factor, often an infection of the bowel. (Inflammatory bowel disease can be part of A.S. for some people.) I remember reading in the A.S.Assoc. magazine that they have traced this disease back to Ethiopia. A major viral epidemic wiped out all those who did not have an acute immune response, an "over-response" that altered one gene. That over- response is the basis of the inflammatory nature of A.S. Marsh, please correct me if I've misinterpreted the facts. Anyway, I find this interesting. Just image. All of us A.S. sufferers were there , in our ancestors, at a certain time in history. The National Geographic research on genetics say we all came from Ethiopia in the first place, but somehow it seems more real when I can pinpoint it to a specific time . I hope you're all busy typing, correcting me on errors. Ha ha. (As per Divvi).
i try not to use my HA HAH cause yall rib me too much on it!! well maybe once in a while now. mary75 ethiopia should be 'home' then not just to AD but all of us:) divvi
OK, here's a beauty. As you all may remember, Jim's family was not supportive during their visit here last month and remain in big denial. Well........today I logged onto the Family Web Page and there was a You Tube Video, that had been commented on as "oh so true," "truer words were never spoken", etc. So I thought I would play it and see what it was about. Well I got maybe 30 seconds into it and burst into tears. It was a joke/video about memory loss and how if it hasn't gotten you younger ones yet it will. I know it was not meant to cause harm, but it felt so cruel. Here I am posting only occasionally to the site with updates on Jim because I almost never get any responses and they go and put something that is laughing about memory loss. I can deal with us joking among ourselves and even sometimes joke with Jim about it and him with me. But, boy that hurt. So like a fool, I did not keep my mouth shut or my fingers still and I commented that, "given the current situation,I did not see it as funny, only painful". Lack of support is bad enough, but that foolishness was just to much for me.
Susan, I don't blame you for letting the insensitive realtives know your feelings. I would have felt the same way and probably said a lot more than you did. Sometimes you have to consider the source and feel sorry for them. God Bless.
Whenever my daughter leans towards being insensitive, I just want to slap her. If I say anything, she says "well you are the one that brought it up. what do you want me to do about it." I just growl to myself and (here we go again) "suck it up." She used to respond to me "well if it's that hard, divorce him." I would say, and who will take care of him. YOU? We have had some really intense conversations. I don't think that she is in denial. I think that she doesn't have enought time, in her own mind, to deal with it. I truly think that she is just, plainly, being insensitive to the situation.
Well, I called DH. He was fine for a couple of minutes. Told me that he was tired, achy and wished that he felt better. Then he asked me what was for dinner. I told his the pot of beans and ham that I had made a couple of nights ago. He said "the ones that you forgot to make right." (we usually put some brown sigar into the pot but I was out so I didn't.) I told him that was correct but that if he didn't want them that I would make him something else. This lead to a rant about me not caring about his feelings or I would have what he likes in the house. He suggested that we throw the beans out because tomorrow was garbage day. Then it was on to the reason that I didn't put brown sugar in the beans was because we were doing bad with money. etc. etc. I finally cut him short with an excuse and said good bye.
What's a person to do? He was acting like a spoiled child. the problem is that when I get home, if I cook something else I might be accused of causing trouble or if I give him the beans then he might refuse to eat them and I will be accused of causing trouble. You can't win this game so you need to play it out without losing too bad.
I bought Jim a silly little plaque awhile back. It has little fishing hooks hanging from it. It reads,,,,,,"BITE ME" I might just start using that little phrase a whole lot more. You are all welcome to use it often and and loudly!
When Clyde's daughter and her mother went on vacation last year they brought him a plaque that said "Everybody has a photographic memory. Some of us just don't have any film." They thought it was ever so clever but I thought it was INSENSITIVE.
Strange-stupid remarks from outsiders don't bother me. I just look at them as an opportunity to educate the speakers-gently. For me it has worked every time (well-almost)