I couldn’t think of a good topic to post this under, but maybe talking about wanting to run away fits the bill. Not only do I have my running shoes on, but I’m thinking about packing a suitcase.
I’d like to start calling a “pity party” by another name. Please, let’s call it stress reduction or a support group or a “sanity session”--anything else, but not a pity party. That sounds like we’re feeling like we do for no good reason. We all have plenty of reasons.
As for myself, I'm planning on having a world-class "sanity session" really soon. Tuesday night I had to speak in front of 50 or so people about being a caregiver (a major stress for someone who hardly ever talks to anybody), and when I got home I was supposed to call my brother because he had just lost a family member. Before I could call him, my sister in Jackson, Tennessee, called about the tornado they had there. I have a niece and nephew who lived in those dorms at Union University that the tornado hit. Another niece is a student there, but still lives at home with my sister and BIL in a subdivision where a couple of homes were blown away. Fortunately they are all okay, but it was a scary, scary time.
Wouldn’t it be nice if the other things in life would cut you just a little bit of slack during the caregiving years? I think it would be a great help if we got to coast just a little in some other areas, just for a while. Okay, that’s a dream—but it’s a nice dream. Until then, I think I’m going to keep that suitcase handy.
Barbarakay: Dear friend, I can understand how you are feeling now and I want to enfold you in my arms and encourage you to let your sadness out and cry for what you are enduring....It appears you do not have a family member or friend to help you accept this step you are having to comtemplaete. I had to make the decision to place my husband in a nursing home four years ago. It was devastating to me at the time but I later realized that my husband was receiving the care there that I could no longer give him. when I visited him in the NH I was rested able to really enjoy our time together . You must think of your health so that you can continue to be his advocate being his defender now that he can no longer take care of himself . I think you know that the time has come to let others care for your DH needs and I just want to let you know that even though it is very painful, you are doing the best for you and him. You might want to ask others for their input as these comments are from my experience and I may be advising you from my feeling that you are at a crossroad. ONly you can make such a decision but do understand that this may be the time to let go of your physical burden of care.
Jan K So glad to hear your Tennessee family is all ok. That was some terrible tragedies. Take a deep breath and one day at a time. I know that day was almost too much for you and this AD disease is so hard on you. No awesome answers for you except trust in our LORD and He will bring us thru this storm. How did the meeting go, was it a support group meeting? Is that what happens at meetings, everyone speaking individually? I have not been to one. Always say I will, but never got there yet. Thank God I found this site.
I feel like running away almost EVERYDAY.This is the hardest road I've ever walked.My husband has never been diagnosed,doctors say they can't find anything wrong.I find myself thinking what's the differance,HE WILL NOT take any medication anyway.Hubby and I both know there's a real problem,we've talked about it.Maybe neither of us want to hear it confirmed.Your thoughts please. Thanks,Ann
I too had to make this very hard decision to place my LO in May of last year. It was a very difficult time in my life and there were times I thought I might not make it, but, I did. For the 1st couple of weeks I kept second guessing myself, thinking maybe I should have waited a little longer, but, then, reality hit me like a ton of bricks and I knew there was no way I could take care of my wonderful husband any longer. My health was starting to deteriorate and I knew for BOTH of our sakes, that could not happen. Yes, there are still times when I hear a song of ours, or see familiar places that we both enjoyed together, or sometimes just being at home, I sit and cry and want him back. But, we all know this will never happen, so, I must have the strength to continue on for both of us.
It has been 8 mos. now and my husband is actually doing great. He still cannot walk, but, I take him for strolls in his wheelchairs around the area. He loves this. We watch the Big Screen TV together. We watched Super Bowl together with all the other residents and families. They have him on pureed foods now, but, he is finishing everything on his plate. He just smiles all the time and still recognizes me most of the time. They have so many actvities planned for the residents. Lots of music, crafts, etc. My DH loves the music, so, we went to that function on Tuesday. They have a Valentines Party next week, so, I will go and be with him at that time.There was a time after he broke his hip, he really went downhill, but, since the anesthesia has finally gotten totally out of his system, he is doing so much better. The anesthesia did a number on him. Since they have doctors, nurses, CNA's dieticians, etc. all on duty, 24/7, I do not worry about anything happening to him. They are right there on everything. The Neuro Dr. and also his regular doctor come to the nursing home to see him, so he never has to be transported. If you need to have transportation, the NH schedules a van to take them to their appts outside of the home, or if you just want to bring them home for a couple of hours or so, they also help you schedule the van for that. So this makes it very convenient and helps to transport. If they feel the resident needs to go to the hospital, they get an ambulance to take them there. They are professionals and they take care of everything for you. This has helped me tremendously. I have gotten to know everyone, from the custodians to the Administrator. They are all like family. Like anywhere else, I have had some problems with his care, but, I go see him everyday and when this comes up, I just go right into the office and sit down and talk with them. The problems are always handled ASAP.
Do I think I could take better care of my husband than anyone else can, you bet I do !!! But, reality is that I could no longer physically or mentally handle the 24/7 Care Giving and the lifting, etc. that goes with it. My husband is 6 ft 1" and weighs about 175. I am 5'3" and a whole lot smaller. I tried Home Health Care for 6 mos. but, it seemed I was doing most of the work because I was there and again I had that I can do it better syndrome for my DH. But, as things started going downhill, then I made the decision.
My prayers are with you during this very difficult time in this journey. I am here for you and if you need to talk, etc. please just let me know. I am glad you have someone that will help you with this. I had my daughter and that helped me tremendously during this time. But, like we all know, no one knows like the spouses that have gone through this, what we are feeling. Take care. Kay Kay
Ann-- what kind of docs have you been to? Have you seen a neurologist? Not that just any neurologist will take the steps necessary to rule out or confirm (at least as much as is possible,) AD.
Do they do basic cognitive testing (such as the MMSE,) and if so, how does he do on it? If he doesn't perform well, a doc would at least have to acknowledge that.
We had a gerontological neurologist (who specialized in AD) be so upfront certain that AD could not possibly be my husband's problem that he insisted that it was some combination of depression and attentional problems. He actually felt that the next step would be ritalin without even calling for a PET scan which--as far as my knowledge is up to date--is the most definitive test. In fact, I would attribute the couple years of dead ends directly to this guy, who was a Johns Hopkins doctor and really should have known what he was doing. The problem was, our local neurologist felt that Jeff should see more of a specialist, and the guy he wanted us to see had retired, so we ended up with the luck of the draw at Hopkins Memory Disorders clinic, and the guy glitched it. But since I trusted his credentials it took us another year and a half to get back on track.
It wasn't until we started exploring the possibility that it was Lyme Disease with an infectious disease specialist that we felt we had someone who was genuinely looking at the problem seriously, and he finally, suspecting dementia, referred us to a different neurologist who called for the PET scan and updated MRI. That was when someone finally gave us a clearcut diagnosis. So sometimes you just have to be persistent.
I spoke to a meeting of Stevens ministers. They minister one-on-one to people going through any sort of crisis in their life. They are so confidential with their work that you may actually know one without knowing what they do.
About support groups—please, please go to one. (They’re not nearly as big as the group I spoke to!) A lady who lives near us just about physically dragged me to my first support group meeting, the first month my husband was diagnosed. They saved my life. I can’t say enough good about Alzheimer’s support groups. My husband and I both started going to another group that same month. It’s now been nearly five years we’ve been going. We have it at an adult day care, so as our loved ones get too advanced to talk, they can have care while we are meeting. We all know each other so well that we can talk about just about anything . After the meeting is over, we all go out to dinner together, where we can talk about everything besides AD. I can’t imagine having lived the last five years without these two groups.
Please do try a support group. If the first one doesn’t “click”, please try another one.
It is not uncommon to not want to hear a confirmation. Denial can get us thru a lot. I know two families who have never seen a doc, It happens. You don't say what stage he is in the progression of the disease--if AD is what it is, but you have to be prepared for what the future will bring and you will not be able to rely on your DH. Have you gone into the exam room w/your DH & spoken w/docs, or are you relying on what he told you they said? If it is AD, it really won't matter in the long run whether he takes drugs or sees a doc, the disease will progress either way. Drugs may slow it down, but it will still progress. The time may come when he will go to a doc, but for now, stay w/us, rely on us.
You have ever right to feel blue and want to dump on someone. That is why we are here and we all feel that way about 4 to 5 times a day. It would help if you had someone to help you with the next step you need to take. It seems like the doctor is telling you that it is time. My dear, it is hard, but you are stronger than you think you are. It has not been long since I have had to place my LO. His doctor told me that it was time. I could not do the 24/7 caregiving any more. Like so many of the decisions we have had to make on this journey, when it comes right down to it, it is up to us. Call the Alzheimer's Ass. and get some information from them for help. They should have sources for you to turn to now. It is not easy and you should not feel quilty or that you have failed with him. It is time to move on now and those of us who have been through this can help. Here is a big ((((hug))) for you!!! Darlene
Carewife, I have supportive friends, that listen and help me. I will try to talk to family this weekend.
KayKay It sound like you found a wonderful place. You are both blessed.
Charlene, Emily and all. Thank you for making me feel I am not alone in finding the decision making is a hard time. I have made several calls today and have started the ball rolling a little bit. At my first choice he is third on the waiting list and they have noted that I am ready in the next month or two. Next week I will look at 2 places that are a little farther that Omsbudsmen suggested. I think you are right it is the best thing for both. I felt all those big (((hugs))).
We have been to a neurologist,I went in the room with hubby.Dr.ask lots of questions and ordered complete blood work.He told us everything was ok with blood tests and some kind of scans.Then he told us he did not believe in any of the medications for memory.He said he felt this was just a normal part of aging.He did have us make another appoinment but my husband later said if that's the way it was why go back.He then cancelled the appointment and said he would not take any medication anyway and that was why he would not go back.Due to the doctor and husband too--What is a person to do?
I would say it's time to get another neurologist. Look for a specialized Memory Disorders Clinic in your area - they are most often associated with a major hospital.
I don't know if you have read previous posts or blogs by me that mention the nightmare we went through with the wrong neurologist. Just because they are intelligent enough to go through medical school and specialized training in a particular field does not always mean they know EVERYTHING. The first one we had was horrible. No matter WHAT I said, he said he didn't see any signs of dementia. Then he sent us to a neuropsychologist whose tests showed Sid in the 1%tile of memory, and very low percentages of other functions. Her conclusion - he had memory problems, but it wasn't Alzheimer's. She didn't have a clue what it was; but she said it wasn't Alzheimer's.
When we moved here to Florida, we went to a Memory Disorders Clinic run by two neurologists who each have 40 years of experience in memory disorders, research, and drug trials. Correct diagnosis; correct medicine = Sid stabilized right away, and stayed stable for over a year. Some decline now.
Unfortunately, we have to be our own researchers and advocates for our and our spouses' health care.
I agree with Joan. My LO was treated for one year for depression and after suffering another heart attack; while being evaluated for a heart transplant other neuroligist dz him w/AD and cancelled all plans of a heart transplant. You have to speak up to anything that they seem to pass over or you feel is not right; remember they can and do make mistakes and are only human, but as there are many of them; they are treating your one and only spouse. I regret that year he could have been on some other AD meds and not just Zoloft.
Ann: As already mentioned, many docs do not know diddly-poo about dementia or AD. I personally think everyone in the medical field should have at least one course in dementia because they will see it--and more and more as we age. Age is the primary factor for AD but we all know that not only the elderly get it. It is not unusual for some elderly people to get senile but that does not mean they have AD. AD is a degerative medical condition--a specific disease--it is not part of normal aging. As an elderly person, I will tell you there are times when I just don't want to bother to pay attention or remember things. Sorry, but that's the way some of us are. But some memory loss and being slower is normal, not AD. It takes some of us longer to recall things just as it takes us longer to cross the street. I notice my children often paving the way for me--they must see it and I let them do it.
You should see a neurologist who specializes in brain disorders. If you are near a large university or hospital they often have Memory or Alz Clinics. Take him there. If you think something is 'wrong' then something is 'wrong.' Absolutely. Blood tests and scans do not show AD. They are done to eliminate other things like tumors, stroke or blood clots. AD is usually dx'd as 'probable' AD by eliminating everything else that could be causing the bizarre behaviors. The only sure dx is at autopsy. You really don't tell us what his behaviors are--may or may not be AD, could be many things, but if you see them, I repeat, they are there! Unless you are some kind of a nut and making it all up--and you don't sound that way to me. As i posted before, the time may come when he'll see a doc--sooner would be better--but for now, he has his reasons. Don't give up.
Normally, I have to do everything for my wife. She is at stage 6/7 and more tipping into 7 now...than 6. I really don't mind doing all for her that I do, but when she resists every step of the way, it really tries my patience. As an example, this morning after I put her robe on, I took her by the hand and started to lead her down the hall... She resisted, pulling against my hand. Again, when I had changed her depends, we started to leave the bathroom to go to the bedroom to get dressed....and she hung onto the door to resist. She wears both upper and lower partial dentures and she is ok to put the uppers in, but when I go to put the lowers in she clamps her mouth shut. This morning, I opted to leave the lowers out rather than fight with her to get them in.
Before I went up to get her out of bed, I poured her cereal and put milk in to let it soak and soften, because I knew I was not about to put her lower dentures in. Going down the stairs (we live in a two story), this morning she decided that she was going to sit on the stairs. Another struggle ensued to get her back on her feet and continue our trip down the stairs.
I got her seated at the table and moved her cereal in front of her, poured her orange juice and asked her to take a drink. She did alright, she put some in her mouth and spit it in her cereal. I assumed she liked her cheerios with an orange flavor, because that's what I fed her. And it was basically the same story when it came to feeding her. She would get distracted, I'd get her attention and bring the spoon up...and she might open her mouth, or perhaps this time she would clamp it shut, and I would have to bring the spoon up from the bowl again in hopes she would forget about her mouth clamping.
That's been my day so far, and it sure isn't over. Tonight is her bath night... Oh joy.....I'm really looking forward to it.
I sometimes wonder what I did wrong in my lifetime to deserve this.
Nuff rambling.....hope things will improve as the day goes along. Got a caregiver coming in for 2 hours today so I will be able to get away a bit, but I'm sure it won't be enough time.
Watchman, I know how you feel. Last Monday was the worse so far for me. My lovely wife is also at the 6/7 stage. She will not allow me to change her and to try to do so, I had better be faster than superman. I bought in our 30 yr. old daughter to help out but the wife wasn't having any part of it. I decided to intervene in hopes that I might have some limited success at getting her soaking wet clothes off of her somehow. I knew this day was coming but I didn't expect it so soon. After she pounded on my chest with her fists and then shoving me backward, with a few choice words from her about me touching her, I decided that neither my daughter nor myself were not going to get her changed. The worse of it was that one minute she was fighting me and the next minute, she was crying on my shoulder saying how sorry she was---this went on for several rounds. Fortunately, my s-n-l has a special repore with my LO, lives close to us and she was able to save the day. Needless to say, this took a huge toll on my heart and the tears flowed that night. I needed to get that off my chest as it has been haunting me all week. All we can do is hang in there and do the best as we can. Good luck with your LO and I hope that there will be better days for all of us.
I am very new to this...my husband was diagnosed with MCI last summer and most of our family denies seeing any changes but they don't live with us. A couple of weeks ago, I told my mother that, unlike what I usually say, I didn't know if I'd be able to hang in for whatever lies ahead. I'm not used to my husband criticizing me, getting furious at me in one breath over nothing (most recent example: I bought TWO loaves of bread instead of one - "how wasteful!"), refusing to speak to me, being unreasonable about so many things, and being obviously and loudly irritated with me in public settings. I want my old husband back - I'm too hurt!
He's very bright so he scored above average on his neuropsych tests, although he didn't remember the name of the doctor, or where his office was when we went back for the results. I tried to tell the neuropsych this but my husband became very angry at me. He told the doctor I was a very difficult woman to live with, a perfectionist who cannot be pleased. All our whole married life he has told me how lucky he feels and how happy he is, and he brags about me to others, he's been my biggest fan and supporter. Sometimes I wonder if it really is me...did I change somehow?
J Thkg, Welcome to Joan's site, No You probably didn't change. I always thought it was me but I realize this disease made him name call among many other things. On different occasions he has called me a "control freak". But that is one of the better names. Always telling my son how bad I am to him. Can't please them one minute and like best friends the next. You need to do your best and don't dwell on what or how he feels about you. They don't realize or know what they are doing and point blank, we know; if they did, they would not do these things.
Just Thinking, Ohhh, I am so happy you are here. My husband has mild dementia that is primarily seen only by ME. I have been told we need marriage counseling, that I am making the stories up about his memory issues, that he doesn't react to others like he does to me because they have a better rapport with him, and on and on. I have wondered most days if I am the one with the diagnosis on those tests that he has as he seems to be fine to everyone else. I am the only problem that he has. For a year and a half he has a drastic change in his personality - Mary Poppins on the outside and Linda Blair at home. He used to be a very quiet man, now he is jolly and laughs alot - laughs at everything, even things that are no where near funny, but everybody loves him because he is so jolly. I think the laughing is to cover his "issues" but what would I know - we have only been married 40 years. I know that most everyone on these boards have problems much bigger than mine, but at this stage - it is such a cunning disease.
There are so many things we can't do anymore because of his attitude - going on trips - he gets mad at me about everything and it isn't fun. A road trip is the perfect opportunity for him to holler,threaten to get out of the car on the highway, etc., be mad at me when we get to our destination. So, I would rather stay home. This is a man that has always had perfect manners, has always treated me with much love and respect - and that is gone for the most part.
I am not complaining - I am just trying to share with you - you are not alone. Now he burps out loud in public, cusses with around our church friends, lies, makes up stories, uses very crude language especially in describing me. Someone in my support group said that there are two times that you pray for them to get worse and one is in the very beginning and the other toward the very end. My last transgression was taking the trash out - that lasted a week.
What works for me, is that I give him space. He says he doesn't want to be around me, so I have a little den that has my computer, TV, books, a twin bed and I feel comfortable in here so I don't "disturb" him I don't try to reason with him - that has caused so many arguments. I have found that the "friends" that I have had for years, just don't get it so, I have been forced to find ones that do understand what is going on, while still keeping my old friends. I don't think one can really understand this until they are on the path. I know I didn't. I have four friends that have insisted that I call them 24/7 anytime I need to vent. I also play tennis twice a week and do yoga and that gets me out of this world of craziness.
I can so relate! My husband has always been a people person, but now he's frankly rude to family and strangers...at the most inopportune and unpredictable times. I never know what's going to happen so I really hate going anywhere with him, but I'm torn because I've always loved being with him and we had so much fun. But I'm frequently embarrassed. I just wish I could tell everyone, "He's still the same man who always liked you, but he has AD - please be gentle with him and keep loving him." But he's only MCI, and we are losing our social life and I'm getting very lonely for the fun evenings with other couples, and the joy of laughing together without fear of what might come next.
Faith & Hope: On my own, I dragged my husband to marriage counseling. I had no idea that I was dealing with a disease of the brain. The counselors told me to leave him while I was still young & pretty enough to get another man. I didn't want to get another man, I did not want to break-up our home & traumatize our children. I think they saw something wrong, but didn't know it was a disease either. Eventually I found out it was AD, no kind of counseling would have helped.
today may be the worst ever. My 24 year old bi-polar daughter recently broke up with her boyfriend and moved back home after two years. She is trying to get disability and has only ever had part time jobs. She hasn't been able to get her meds and has been off of them for awhile. Today she told me she was going to check herself into the psyh ward because she was afraid of hurting herself. She didn't want me to go with her because she sees what I'm going through and doesn't want to add to it. I just got a call from her that she has been admitted and they are saying she needs long term treatment. We new that but it's been such a day. She was worried about telling her dad so I did it. I don't know what I expected. She thought he would be upset but he never even missed a moment of his tv show. Talk about feeling alone. I don't even feel like any one could understand what this is like. I feel like I didn't even have to die to go to hell. I made it already. Best of all is that tomorrow is my 52nd. birthday. Sure never thought my life would be like this. Sorry for the pity party, just no one to talk to.
Hi krafty. I know the alone/no one to talk to feeling well. At least your daughter may be getting the help she needs. I think the hardest thing is when our young people are struggling.
That's the whole point of coming here - we DO understand how you feel. When your spouse can no longer meet your emotional needs, you feel alone, alone, alone. After a lifetime (in our case; less time for others) of being each other's support system, suddenly, you can't rely on them anymore, and it is so, so, so lonely. I wish I had solutions for you - I don't. Just understanding.
Happy Birthday. Doesn't this just stink that you have to endure this in your early 50s! I can relate. I am 54 and DH is 60 and I have been at this a few years myself. I am really tired today because working out in the yard doing projects isn't the same with my husband this year. Last year he could stay on task, but not this year. I am so glad my 19 year old daughter has a very helpful boyfriend. He has really been helping me.
Faith & Hope, I just wanted to say hang in there. I also wanted to tell you that there is only a small window of time in the early stages of the disease that the Alzheimer's patient understands that anything is wrong with them. That window is really short. When my husband was in early stages, he couldn't read so he wouldn't have been able to read up on the disease. I would say that his window of understanding for him lasted about a week after his first doctor's appointment June 16, 2006 when they diagnosed him with rapidly progressive dementia. Now he doesn't even know he has it. I hate to say this, but it's almost a blessing that they don't understand what they have. My husband has become more mellow with this disease so that has made it easier on me. Joan could probably speak to what she thinks about what the patient really truly understands, but the Dementia Clinic in my area says they don't really know anything is wrong and I believe that. Yes, I have felt like running away a few times myself. Yes, I some times feel very frustrated that I can't talk to him about anything anymore.
Krafty, please eat some of your favorite birthday cake tomorrow.
This past weekend I really wanted to run away. My beloved hubby still refuses to go and pick up his results from the neurologist. He is getting worse with his forgetfullnes and sense of direction, but the people that don't live with him see nothing wrong. He is also becoming short tempered and critical of me. I am in my mid-forties and this is not the way I envisioned my life to be. I thought that after the daughters left, we would have time to spend with each other doing things that we liked, another newlywed stage, but I find we are just drifting apart and that I am becoming less patient with him. Welcome to my pity party.
Vanessa JDV I have wanted to run a way so many times.I have even layed awake at night thinking about how nice it would to be able to do what I wanted to do instead of what I have to do.But I have three wonderful children who are always there for me,they don't live close to me but they are so supportive.My daughter flys home once a month just to spend time with me and help me.So when I get it on my mind to run I think about them and how hard it would be for them to take over so I cry a while and I beg God to make me a little stronger and sure enough I get through that trial, it works everytime.He sent me to you guys.
Oh Nelliejane, I SSSOOOO hear what you are saying!!!!! I fantasize about moving across the country, changing my name, and starting a brand new life!!!! I have 2 teens at home, so it is not going to happen, but I really worry about after they are gone. I don't know if I will have the strength to deal with my husband alone. My girls are my only light and I don't know if I will survive their leaving home.
Exactly me too, Vanessa. I'm 46. I have 2 girls in college, and a daughter and son in high school. I certainly also had a different vision of how these years of increasing freedom from taking care of kids would be. I am making the best of it, but sometimes feel like I'm living an 80 year old's life, trying to keep husband entertained enough that he doesn't have time to think about what he can't do, taking him to the grocery store and everywhere else. etc. Perhaps instead, my life at 80 will be exciting and dynamic!
My dear young friends:; My heart aches for you and your responsibilities that you should not have at a time when you should be enjoying your lives. your husband, and your family. If you are in your fifties, or sixties you are young to me. In this journey of Alzheimer's, I believe you are in the midst of the most difficult time in the care of your husband or wife. Your spouse still outwardly exhibits bits and pieces of his/her former self and you are given tantalizing glimpses of life as it was. You are still trying to resolve your new role as the grownup making difficult decisions for all of your family when you need the strength of your partner. And you are not ready or able even to "let go" of your partner...
May I share some ways I have finally gained some peace of mind if not happiness in my life as a "widow" grieving daily for a husband who is a stranger. Ifinally, after several years of trying to hold on to my life as a couple I realized that I had to make a life for me as a person single. I made an effort to go to lunch with friends, tried new hobbies ( my computer life is one). renewed church activities, have been on a few trips, . I know with a husband/wife , and children still at home you are limited in your time. Perhaps you can do some activities at home. The main thing is to try and develop a mind set of a life alone so that as your spouse withdraws more and more you will have prepared yourself emotionally . Creating a life for yourself is essential for survival . You will still have your memories of your dear one and you will better be able to cope with the daily fatiguing and difficult caregiving of someone you love but can no longer share your life.
This is how I have learned t o survive and ha ve gained some contentment if not happiness.
I'm more amazed by the day at all the company I have. Naturally, before I became involved with AD related message boards I thought I was probably the only mid forties (47 now) wife with two adult kids, two teenagers in high school, and grieving. Grieving for the loss of our empty nest plans to travel, to enjoy our second chance at "independence." But more deeply, grieving the loss of companionship, and history with my spouse. Sometimes I wonder "Where did my past go?" As far as he is concerned, some days he doesn't even know we HAD a history.
***************AD JUST PLAIN SUCKS!!!!!!!!!!****************
Our daughters are in college and working full time 1700 miles away. They have a full plate and don't need any more stress. When they come home, they are great relief. My husband is still very "functional", going to work and living a "normal" life so far. I need to be the grownup and make the decisions, deal with the finances, still hold a full time job, etc. Sometimes I wonder what would happen if I breakdown and give in to the pity party? I will like somebody to take over and be the strong one I could lean on, if just for a few days.
My husband was always the strong one,and when he was diagnosed I was devastated.To tell you the truth I didn't know what I was going to do.I guit my job in 2005 so I could take care of him and I started learning how to take care of finances, make small repairs, and mow the lawn. I had never started a lawnmower.I still don't like this responceability and I think that is why I feel like running off,not from my husband but from the disease and all it brings with it.I loved being took care of and now there's nobody to do it.I always thought that I would be the one to get alzheimers, my mother had it and my sister is in the nh now with it,but it didn't work that way. GOD BLESS ALL
I hear you all. I am 49, my husband is 62. Sometimes when I am sitting in traffic, to and from work, I look up at the planes flying out of Phoenix and I sooo wish I was on one flying away from my life. Or sometimes I want to just keep driving. Got my satellite radio to keep me company, just drive and see how far my credit cards take me. Kinda like Thelma and Louise (minus Louise) I think of that scene in Divine Secrets of the YaYa Sisterhood where Ashley Judd just drives herself to a hotel by the ocean and sleeps for a couple of days. Then she picks up the blue princess phone, orders coffee and gets herself together and heads back to her pending nervous breakdown. (Okay I can do without the nervous breakdown)
I had to move out. DH has MCI and also suffers from PTSD and his aggressive behaviour has gotten to a point that if I didn't move out I was going to get hurt. This certainly has gotten the attention of Dept of Veterans Affairs and they have him going to his phycologist more frequently plus they are reassess his disability pension and will probably be adding to it so he can get more help. In the mean time I'm in town in an apartment and I feel like I have run away. Though I do talk to him several times a day and go out to the cabin to check that he is OK. But mentally for me this has been a god send because I have gotten this last month to catch my breath and regroup.
Today I think I will not be able to do this much longer. We've had anger issues for a few years. The neurologist prescribed prozac as he was of the opinion that husband may be depressed. Also he takes meds for heart disease so can't take meds usually given for anger. Recently he started telling me almost daily that he does what he wants to do not what I want him to do. Also he tells me I'm stupid, that I'm nothing ,that I don't do anything. Yesterday he did this in a restaurant. Anything or nothing can trigger the outbursts. He just constantly attacks me verbally. I know it's the disease....or maybe not....but whatever it's killing me. It's such a negative envrionment. My blood pressure is high, arthritis painful...I'm certain it's stress. It's really too early for long term care but I'm just not able to cope. What to do???? He can't be left on his own for any length of time .
Oh, dear. Anna, I think you may be right. If there was a reasonable trade off I'd say give him the anger meds (risperdol or seroquel), and nix the heart meds. Perhaps, even though they have risks, the calmness might help his heart all the way around. Otherwise, you need to be caring for yourself. Consider that if you are rested, and the bulk of his care/supervision is on someone else, the quality of your time with him could be well worth it.
Hmm! Amber, my post to you seems to have found its way into the twilight zone. I wanted to say "Good for you, Girl." I am happy that you are looking out for yourself, safety-wise. And you are a good example that if well rested, and not entrenched in the 24/7 turmoil, you can still be very proactive with your loved ones care. And the quality of your time with DH will be so much better.
Whether it's the disease or not, it's time get some big time help. No one can live under that kind of stress. I would talk to his neurologist first, and explain just how bad the situation is. If he can't fix it with meds., call the Alzheimer's Association, 1-800-272-3900- and tell them you need HELP ASAP. They should be able to tell you who to call and where to go to get help.
My heart goes out to you. If your DH was not like this prior to AD, then I would guess it IS the disease. HOWEVER, you do need HELP. My husband was pretty much the same about a year ago. He said all kinds of cruel things to me. I KNEW it was the disease because he never, ever acted like that before. I wrote a letter to the neurologist prior to a visit and told her exactly what he was saying and doing. I don't know anything about heart disease, but my husband has had TIA's and they show up on an EKG. BUT the Dr. immediately put DH on seroquel and it helped immediately! I call it the wonder drug. When he first started taking it, it caused him to sleep a lot. As much as I hate to admit it, I enjoyed the fact that he was not awake insulting me and verbally abusing me. My husband would say horrible things about me (in front of me) to other people. AFTER seroquel, he has been as mild mannered as can be. He tells me he loves he all the time and NEVER says anything insulting or hurtful. You just wouldn't believe the complete turnaround. He is even nicer than he was before he was diagnosed. I was at a place a year ago that I did not think I could take anymore, my blood pressure shot up too and I was passing out the alz. cards to people the he would embarrass me in front of every time he did this. This was better than trying to explain or getting defensive. I passed out a lot of cards during that time. In case you are not familiar with them, they are business size cards that have a picture on them of a flower and say "the person I am with suffers from alzheimer's disease. Please be patient". I ordered them from the alz. organization and I would write on the bottom....I am his wife...they really helped! Hang in there girl, better days are surely ahead.
My heart goes out to you who have a "new" spouse with very bad manners, cruel comments, and free with the ongoing critical remarks. My husband has MCI and is 99% functioning. But the way his disease was manifesting was emotionally attaking me for a solid year and a half. I did reach a breaking point and wound up in the hospital for 4 days. The doctors would not let me go home until he was out of the house. Fortunately we were able to arrange for him to go stay with my daughter where he was as sweet as a lamb. He stayed for three weeks and was worse than ever when he came home. I have decided - and so far it works for me, when he starts his stuff, I just walk out the door - day or night. I don't do it to punish him, I do it to protect my feelings and energy. I usually go to a neighborhood park and feel like a street person. One morning he left to run an errand, angry hateful, etc. When he came home that night he was as sweet as he has ever been. He had always been - before this disease - a very sweet loving husband. I don't know why for a year and a half I was the "default" villian nor why now he came home as an angel. I am enjoying it but I am not deluding myself that everything is ok now and that the MCI has gone away. It has just moved to another part of his brain. It isn't fun, it certainly doesn't do much for self esteem, intimacy or companionship. I understand and my heart goes out to you. I hope you are able to find some relief somehow. I didn't know I had a breaking point, but now that I do know, I I have to find ways to take care of myself before I get there again. I do have thoughts,tho, at times about how easy would it be to move to Mexico and just act like all of this is a bad dream.
Thank you for your support. We have an appointment with the neurologist in May. I will discuss the meds for anger.
I can't say that husband was alway sweet and oving prior to AD. He as inclined to go into "snits" and not talk for a day or so if something displeased him. Also he tended to assign "blame" to events or situations he didn't like and then assign that blame to some one other than himself.
I will be looking into LTC, just in case and will discuss alternatives with the SOCIETY. I know I would fell that I was abandoning him if goes into a care facility. Since I don't have any family support, I know that will have to ahppen. It's a matter of time.
My husband recently went into Hospice care here at home. He is also eligible for stay of up to a week at a time at Hospice House which is a lovely place built like a lodge with a huge fireplace surrounded by big, comfy, leather furniture.
So I have been dreaming about running away for a few days and leaving him at Hospice House. Then early last week one of my dear cousins died in a neighboring state so I placed my husband in Hospice House and took off with plans to stay several days and to sleep the whole time if I wanted to. I checked into a motel after the service for my cousin and put up the "Do Not Disturb" sign with plans to sleep for days. All night when I'd roll over, I'd turn to see how my husband was doing and each time I was a little startled that not only was he not there but I didn't have to worry about it. I ended up coming home a day early because I needed to be with him. I needed to make sure he was OK. So--running away isn't all it's made out to be after all.
I think you'd have to be superwoman not to think of running away sometimes. There are times I can't wait to go to the grocery store just to get out. And for the most part my DH is very sweet, but we haven't had a real conversation in so long. and I can see him going downhill it seems every day. Now he sleeps all the time, which he had been doing, and then started getting up, but now he sleeps again, and hardly eats. I live alone, without the advantages of being able to go where and when I want. But we've been married for over 30 years, and he's been a wonderful husband and father, and I love the man he was, so I love the man he is.