Last week my DH had a mild heart attack. I took him to the ER and after about 6 hours there, they transfered him to a big Medical Center. We were there for 4 days, and all the time he was there he had to be restrained. He kept pulling the IV out. And he didn't want to stay in the bed. Well I can tell you it just about broke my heart to see him like that. I fed him and talked to him etc. He seemed to be a lot better when I was right there. Well needless to say, my nerves were shot by the end of the stay. I said to myself, Girl if you want to be around longer, than you better start looking for help. I'm his caregiver 24/7. There is no family around to help. Friends are all bussy or live 2 hours away from here. Well I put some things in motion to give me some respite at least one time a week. I quit smoking on Christmas day, becouse I was afraid that he would want to light a cig. even though he hasn't smoked for about 10 years. But he asked me a few times to give him one. Anyway I think I got that licked. Day 54 and still hangin in there. Anyway what I'm trying to say is, The stay in the hospital opened my eyes, I'm not a super human beeing. So now I will take care of me too. I'm sure that there are more caregivers out there that had to be close to loosing their last nerve. I feel a lot better getting all this out in the open. I know you all understand the need to vent. Anne
Yeah, I've been thinking about my health lately too. My husband doesn't yet need the 24/7 care, but the emotional toll is killing me. I'm planning on talking to our neurologist about recommending a therapist I can see - one who specializes in Alzheimer caregivers.
The absolute most stressful time I had was when my DH was in the hospital. I had been advised to stay w/him 24/7 & a cot was brought in for me. By the 3rd or 4th day I was so stressed out I had to run away. I called for a private nurse and fled home, then to a doc who told me that from now on my health and well-being would depend on my husband's condition--like I didn't know already! It was the first time a doc had given me a pill to calm down. I thought my blood pressure would spurt right out the top of my head. My son would come in each day to spell me for a couple of hours, but it was not enough. God, how do we get thru these things!
My niece went to a counselor when she had to place her AD mother, and she's a strong, stable, responsible person, but it was just too much, too much. So I vote w/Joan, if you can get a professional counselor to help you thru this, do it. People like my niece and me get thru the trials and tribulations of every day life and stress, but caring for someone w/AD is not an everyday event. I knew I was a strong person since childhood, but AD is a formidable foe and any help you can get--take it!
I've been dealing with a mysterious ailment for the past 3 weeks and finally saw a dentist and gp with no result. It's sever pain in my tongue, now radiating to the lower jaw, triggered by eating and talking. A best guess diagnosis by an emergency department of one of our best hospitals is "facial nerve pain". Medication hasn't touched it yet and this is making me extremely short tempered. My poor husband bears the brunt of this and he is quite bewildered as I am usually quite healthy. I hate to see what would happen if I became seriously ill. I'm sure it's the biggest fear for all caregiver spouses but I just had to vent!
Carma, My husband had 1st heart attack at 31 so I know how that tears them down. Then; this! We just got home today after 5 long days and 4 longer nights in the hospital. Severe stomach and side pains; 10 hours in ER Wednesday before admit. We got clearance from cardioligist for my LO to have gallbladder removed (after two yrs of pain attacks). Surgeons did that Friday then gastroint team came in and removed large stones from bile duct. Yes, I scarely left his bedside because he might answer questions wrong or wrong meds given which almost happened. After surgery pain meds had him bad speaking of deceased relatives being there and how he could have built home (hospital) better because he got lost from bathroom to bed. Poor guy is still totally confused. Today didn't want to leave hospital , said he needed surgery. Still thinks his pain now is because he needs surgery. Everyone around is getting the flu so not many vistors or help. I do not need to get sick. He needs me. Yes, You need to do whatever it takes to keep yourself together. Congratulations for your awesome accomplishment ; quitting smoking. That is the best biggest thing you will ever do for yourself. I quit in 2001 and it wasn't easy but with GOD's Grace and Mercy and every aid available at the time I quit. My husband finally quit in 2003 after 24 years since his 1st H A. I often think how bad it could be if we still smoked. Too dangerous. We are not ready for daycare or outside help yet but I did open up to my children about possibly needing more help after their flu. Thank God for supportive kids.
Thanks to all of you for replying. This hospital stay has realy opened my eyes, and as some of you said, we need to take care of ourselves, we have to be here for our LO. I have not heared from the doctor that attended to him at the hospital, he suposed to make an appointment for my DH for a fallow up with a Cardialogist. I will call him, if I don't hear anything by next week. Yes smoking was very hard to beat. I still get some powerfull cravings but I'm sure glad that I came this far. Anne
Carma, I will be praying for you to get comfort thru this and to stand firm with your decision to quit smoking You are doing the best thing possible for yourself. I know its hard Even after quiting 6 years ago, I still get times when I have something missing after I eat or when I get stressed but I tell myself it is not that little stinky 5 inch stick of yuck that controled me for 35 years. Someone told me we are bigger than the cigarette and it finaly clicked; they were right. I just keep remembering all the bad it caused me and one would lead to two and so on. May God bless you. PAT
Carma and all, There is a condition called "hospital delirium" or "hospital-induced delirium". My husband suffered from it even before his dementia was noticed. If you want to look it up you can go to: http://www.merck.com/mmhe/sec06/ch083/ch083b.html
And about us caregivers not being able to take care of ourselves--Last week I found out what taking care of my DH has done to me. I have been getting so tired, and foggy lately. I thought I was just going into depression over the situation. But I finally had other symptoms and went to the doctor and an hour later was having a transfusion at the hospital. I spent three days there getting more transfusions and tests. Turned out I had bleeding ulcers though I had never had any stomach pain. I just haven't been eating right, and have been taking a lot of aspirin, etc.
Thankfully, my son lives nearby and took over the duties of caregiver while I was in the hospital. My DH has dementia plus three kinds of cancer and his oncologist contacted Hospice for us about a month ago. I told them we didn't need them yet, that I could do everything myself. But it would have been much better if DH could have gone to Hospice House while I was in the hospital. I called Hospice back today and we are signing DH up later this week. I'm hoping that when I'm a little stronger, I can take a short trip alone to visit my other son and let DH stay at Hospice House. Or maybe I'll just sleep for a week.
Well Thank God that this hospital induced delirium is over. After reading on it I know this is what he had,Thanks to Bebe's info. My LO after having surgery was hallucinating, not sleeping at all, seeing and talking to deceased relatives, seeing fire, and strange people in our house, even some incontience, all for 3 days after leaving hospital. It was very scary not knowing whether this was a change in him was permanent because of anethesia and AD. Everyone had the flu and I had no help . I just kept thinking I am not ready for this. You all that already are in that stage, God Bless You. I guess when the time comes I will survive, with God's mercy and grace; but I am not ready. No one is never, I am sure. Thanks for allow me to vent. Pat
What's the first thing you need to know when your doctor diagnoses a loved one with Alzheimer's? Well, there is a shopping list of items that you need to know first but we will start with the first first thing I think you need to know. My personal selection is that you need to know that this disease kills. Let me repeat that. This disease kills! The normal and inexorable progression of this disease will eventually kill its primary victim. It also has the capacity to kill collateral victims. Primary and secondary caregivers are placed under enormous physical, mental, and emotional strains. An individual’s lack of proper knowledge and respect for this disease will be rewarded with entrapment in, and eventual consumption by, the all-consuming vortex created by this incredibly evil disease. Many caregivers are outlived by their wards.
Have I got your attention? Good! I believe that at least a minimum knowledge of Alzheimer's disease is essential to an individual’s long-term mental, physical, and emotional well-being. When my wife was diagnosed in 2002, I thought that I knew and understood the enemy I would be fighting. I had surely heard of Alzheimer's disease and I felt that I knew enough about the disease so that only a cursory examination of the Internet or lightweight inquiries for her personal physician or neurologist for additional information would be necessary. I was so frightfully wrong.
Using the amazingly accurate vision provided by hindsight I have been able to look back in time and determine that for several years prior to her diagnosis there had been signs that something was terribly amiss. Following the diagnosis I still saw no reason for alarm and continued working at my regular job. While I did take on some additional household chores that was pretty much the extent of my acquiescence to Alzheimer's disease. I had hoped that the progression of her memory loss would be slow enough so that it would allow me to retire in October, 2005 as planned. It was not and I did not.
In March of 2005 I was finally convinced to leave the workplace to devote more time to care for my wife. I was about to receive a rude and harsh awakening (about time!). Although she recognized me as one who would take care of her and with whom she was safe, she had already lost her ability to recognize me as her husband. My single-minded desire to reach retirement age and my lack of knowledge and respect for Alzheimer's disease had caused me to foolishly forfeit my wife’s’ final days of awareness. I will always be haunted by the fact that I let my wife of 36 years go into that darkness alone. My selfishness also caused me to put other family members and our neighbors under far greater stress and strain than they deserved. Now I was getting a full opportunity to observe where this disease had taken my wife. Still (remember the lack of knowledge and respect) I did not give this disease its due. I continued to wear my blinders. I would leave her in the house and go outside to do yard work, or worse yet, leave her home alone while I went off to do shopping or pay bills or whatever. I was still living in the fantasy land that my ignorance allowed me to occupy. Sometimes I would come home to find her in a state that I did not understand. Rather than try to understand these states I just chalked them up as "bad days".
The increasing incidence of these "bad days." caused me to curtail solo away from home activities. This was about October of 2005. From that point on we were attached at the hip. If I thought that the decline in her condition had been precipitous from March to October, I was in for another rude surprise. Remember that lack of knowledge and respect thing? It was now payback time. Previously, I had only received a few slaps to the head trying to wake me up to what was going on. Now, I was about to receive a 2 x 4 across the forehead.
By this time I was performing all the household chores. I did so because it was easier to do this in the first place than it was to correct something she had done improperly, or to correct her as she was attempting to do something. Still wallowing in my ignorance, I made no attempt to decipher what this meant or to make a sensible plan for the future. Oh, I made some plans. They just weren't sensible plans (there’s that lack of knowledge thing again). I would take specific acts she performed today and make plans for how I would react to those same acts tomorrow. The problem is, most every day brought new performances. I was wearing myself out making plans that I never got to use. Soon she was making attempts to leave the house on her own and walk away. When asked where she was going she would say "home". Most of these attempts were thwarted with physical restraint. The physical restraint became more and more vigorous. The attempts to go "home" became more and more frequent. Finally, the idiot (uh, that would be me) escape-proofed the house. I had now imprisoned my wife in her own home, and I was her jailer. This precipitated a period during which she started becoming more physically and verbally abusive. On came the prescription drugs to control her anger. Then came the prescription drugs to control my emotions.
Add to this charming picture a very dramatic decline in hours and quality of sleep and we were both very rapidly being sucked into a gigantic sink hole. About this time, I started attending an Alzheimer's support group meeting. I often told the other attendees at these meetings that they were my “crutches” and that I was shamelessly leaning on them. I am convinced that these dear kindly strangers kept me from falling irretrievably into the abyss. They helped me overcome the two greatest caregiver sins; ignorance of and lack of respect for the enemy.
This compilation is a continuing effort on my part to expand my knowledge of Alzheimer's Disease and therefore to enhance the possibilities that I might survive this tragedy both mentally and physically and provide the proper care required and deserved for my wife. Guilt and anger are two of the most extraordinarily useless emotions you will be over-using in the time ahead. You will probably face them daily. It is essential that you learn to control them and not let them control you. My reason for sharing whatever I can with you is the hope that I may prevent you from having to experience some of the problems I have encountered in my wife’s’ battle with this disease. There are many pains ahead for you and your loved one to endure. Please seek and accept all the help you can find. Please attend face to face support groups. Especially try to find groups populated with like caregivers. Spouses with spouses, siblings with siblings. But, take what you can get. If I have provided some help to ease your journey I will have been successful in my endeavor. God bless all and good luck!
For yrs I felt something was amiss, but had no idea, not even a hint, that I was dealing w/a brain disease. When I did realize it, I felt so bad that I let him go thru it alone, that I didn't know what was happening to him. I could have held him closer, been more understanding, helpful, but I didn't know and as bad as I feel, I will never condemn myself for not knowing--how could I? Further, I honestly believe he knew something was wrong all along but he was never the one to confide such things to me. He'd keep it to himself at all costs. I swam for a long time in the River of De Nile, but as the years went on I researched and learned. I didn't know enough soon enough to be as understanding as I wish I had been, but I bless what I finally learned so that I could be all that I could be for him as time went on.
Thank you for your posting. You did the best you could--you are doing a good job--your words are true--your wife is lucky to have you. You understand the unrelenting stress, you will get thru it, you will survive--just continue to follow your own advice.
Bill..... Your hills and valleys are very simular to mine and my wife.... Just knowing theres others following the same life contours,, having the same daily problems,, the guilt,, the challenges,, has been a help to me,,, just knowing there is a place to hang our hats and theres others that understand has been a great help..... I thank you for sharing your thoughts... Hang in there, put your heart and sole into your present venture, but do it in a way that YOU endure.... Dream my friend,,,Dream of times YOU can control, .............. Dan
billp, Thanks for the very well written reflections on what we are facing with this disease. I, too, waste too much effort planning for a future that may or may not come. We want to learn from our mistakes but we have to look ahead. We'll never have the tools or the energy to face the future if we have one foot stuck in the past.
I, too, retired to take care of my wife and I probably waited too long. One of the things that I liked about my job was the occasional overnight travel. As a result, she was home alone and although I worried about her driving, I didn't do anything about it because it would have tied me down more. A few days before one of my trips, she totalled the car by trying to cross four lanes of traffic and not making it all the way across. I remember making numerous phone calls from the hotel to the insurance company, the car rental place and to her trying to handle things long distance. I still didn't face the music and shortly after I retired, she had an accident in the car wash. To make matters worse, she couldn't give me or the insurance adjuster a coherent explanattion of what had happened. The car wash manager said that the only way her car could have jumped forward is if she left it in drive. I figure that the attendant must have said something like, "Roll up the window, pull forward, and put your car in neutral." That would be just too much information for her to process even back then.
Now I try to stay as active as possible. As with you, I do all the housework although I really don't have a good feel for it. I can't do anything on my own because she wants to be right with me. We try to plan a trip every six months. In May we are going to Las VVegas and the Grand Canyon. I don't know how much she understands, but I feel that she should do alright as long as I am with her every step of the way.
Again, I appreciated you post as it rang a bell with many of us.
Thank you all for your encouraging words. I wish that I could still travel with my DH, but he gets more confused and very agitated when we go anywere. I finaly got a phonecall from a Social Worker from the VA, she asked me lots of questions, and also how much income my DH has every month. She never ask me how much I get a month. Anyway I found out that they would give me a total of 21 hours a year of respite,without me having to pay anything, then there are 9 hours that I may have to pay a co-pay, but she said it probably will be under $20.00. They give a total of 30 hour a year. She told me that they could give me respit twice a month for up to six hours each time. This is not bad, it will get me out of the house for awhile. My DH doesn't want to go to the store with anymore and I can't leave him alone, when I talked him into going with me one time, he refused to get out of the car. So that took care of that. This way I can go grocery shopping and I don't have to worry about him. When he saw the VA doctor the first time last Monday I made sure that she understood the situation I was in. She was very understanding and I figured it would be a couple of weeks before I heared anything from the VA. So you all can imagine my surprise when I got a phonecall this afternoon. She also told me, that as he gets worse they will be there too. I am so glad that I fought them for a year and didn't give up. The only thing I forgot to ask her is what they would do wirh DH should I get hospitalized. But I will send her a note next week,since I have to send her copies of the Medical POA and his advance directive. I feel so much better allready. I'm still doing good on my not smoking. It is now day 74 and I saved about $300 by not buying cigarettes, I can use that on the co-pay :) After I read the definition on the hospital induced delirium I saw that this had a lot to do with his behavior. Poor guy must have been scared to death. All the people over him and the needles and the machines. I hope that he is going to be all right from now on, phisicaly anyway. The Alz has him in his grip and there will be no letting go, as we all know. Thanks for listening to me. I know that I went on and on, but you guys are my only outlet.
I am just assuming I will remain able to care for my husband, which may be like assuming our investments will see us through this! Because we live in our motorhome fulltime I decided to get some of those rubber stretch bands for exercise since they take hardly any space. It's been almost a year since I hurt my back trying to stay in shape with those bands! At this point I am barely able to bend over to put on my socks. A cousin in Tucson has recommended a chiropractor and we are staying there two weeks in hopes that is enough time to fix this. I just hope I can remain as strong as I have been in my past, but of course, all caregivers keep aging right along with those for whom we are giving care. Well, gotta go, this is the middle of one of those nights I couldn't stay asleep - but now my husband woke up and is scared because I am not in bed! I can't imagine giving up smoking in the middle of all of this. I really admire that!
Carma, CONGRATULATIONS on your 74 PLUS days not smoking. Being an XSMOKER, I know what it is like and what I went thru to quit. You go girl, I am so happy for you and proud of you. AWESOME ACCOMPLISHMENT. PAT
Carma, I'm glad you are getting some help but wanted to share this in case you can get more. My husband who served during Korean Conflict (considered wartime service) qualifies for free long-term care at the state-supported war veterans home about 60 miles away. It is not actually a VA facility but the VA does help with the funding. They have a 120-bed ambulatory Alzheimer's unit. It's supposed to be very nice and they have bowling, swimming, golf, etc. on site. The town has "adopted" the patients and takes them to ball games, picnics, etc. There is a 6-month waiting list but until my husband was recently diagnosed with terminal cancer with less than 6 months to live I was getting the paperwork together to get on the list. If your husband has already been VA approved, then you have half the job done. But remember, it's not a VA facility but state-supported war veterans home. I've heard all states have these and they are free for room and board. You or your insurance pay for the medicines, doctor visits, etc.
Thank you Bebe for the information. I'm sorry to hear about your husband and I hope that they can get him in there soon. The next time I get a hold of the social worker I check with her. I know that he would probably qualify for Aid&Attendance. That would pay part of the amount for a nursing home. I know that there are State run Nursing Homes, but I have heared nothing good about them. We do not have a state supported war veterans homes that I know of. But I will look into it. Thank you again. It would be nice if we had something like this around here. Thanks again.