My husband is at the stage where I have to do everything, and I mean everything, for him. I also work full time as an elementary school teacher. So I work literally 24/7 with no breaks.I told my doctor yesterday I didn't know how much longer I can keep going. I was ashamed to tell him how quickly I go from depression to frustration to anger, and yes even hate. The stress is constant and never lets up. I am so tired and emotionally spent. He is starting me on a medication today to see if it helps with my mental and emotional state. I just never understood how devasting this horrific disease is on the caregiver. I feel like I've lost my life along with my husband and some days I I would love to run away! However, God's love and power sustain me and I keep finding a way to go on.
Patt K., sending you lots of gentle hugs at this very tough time. The emotions you are feeling are normal for someone dealing with such a heavy load, and it's good that you can talk to your doctor about them. I hope the medication will help. Please let us know how you're doing. ((((hugs))))
Patt K. Hi & Welcome to our family. folly* is so right, the emotions you are feeling are NORMAL, don't let anyone tell you different. Frustration, angry & hate are feelings that unless you are a saint, everyone dealing with this disease feels. I hope the medication will help. You sure have a plate for working & being a caregiver. Big HUGS!
Patt as we "oldsters" have already found out-don't ever feel guilty about your emotions. I was horrified to realize there were times I hated my husband. Now all I feel is pity and I don't like that either. Welcome to our family.
Patt. I do so sympathize with you. My DH has had AD since he was 58 and he is now 66. I also do everything for him (bathe, shave, hair cut, teeth, nails, toilet, dress and now helping feed). It is very exhausting. Then in between, there is cleaning the house (not as good as I used to do it), cutting the grass front and back (not perfect but neat) and various other duties for the home and taking him with me shopping (we go when there are not a lot of other shoppers so that no one gets bent out of shape). With this, he needs to walk every day for 30 mins if possible. Our meals are very simple and now whatever he can eat with his fingers. He eats from a folding table in front of his recliner and the TV. Lots of rugs and towels and clothing that are washable. I also found some great aprons at both WalMart and Smart and Final. I cut off the side ties as I don't use them and then I can throw them in the wash.
You can't do it all. We are not wonder women. There is no way I could work full time any longer. I worked for the president of a company and taught night school. I am the type of person that gives a lot of energy to what I do. I had to quit my job and teaching in order to take care of my DH and myself. Believe me that was the best decision I have made.
Check Social Security and Medicare if you haven't already.
Another thing I learned is to ask for help when you feel like you are going to explode. Get someone in to watch him for a couple of hours. This worked for me until we had the toilet issues and I felt it difficult to ask someone to take on that duty.
We can only do this one day at a time and the best we can. Remember, he is not doing this to you. Anger wears us out. Get sleep when you can, eat healthy (lots of protein) and water. Try to find something you enjoy doing.
Sometimes I scream out at God and then am grateful He doesn't retaliate. I find some comfort in reading the Psalms and this makes me calm down. Sometimes I want to hit my head against a wall or just get drunk. But then I realize I'd be worse off. Sometimes I cry because of frustration and the feeling I am not in control of this situation.
Unfortunately, there is no support group in my area so I really depend on this network.
Welcome to my website. Let me first say that you are doing too much alone. You need to bring in some reinforcements. Call:
The Alzheimer's Association IN YOUR AREA - ask what FREE respite services are available - every area is different, but there are free and reduced services available. If you do not already have one, ask for a social worker to be assigned to your case to help you find services.
Log onto the home page - www.thealzheimerspouse.com - scroll down on the left side to Elder Care Services - it will give you names of agencies in your area.
If your husband is a Veteran, call the VA to find what is available to you.
If your husband is on Medicare, call them (there is a link to Medicare on the left side of my website). They may offer some services.
If he is so advanced that you need to do everything for him, call Hospice - they will evaluate him, and if he qualifies, will provide services for you.
There is no need for you to go it alone, even if money is an issue. There are programs out there to help - you just need to find them. The above list should be enough to get you started.
Again - welcome to my website - You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a new "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Welcome Patt, you are among a wonderful family here. We will do our best to answer any and all questions you may have. Hang in there my friend. Arms around, Susan
Patt, you must reach out for some help. You can not do it all. Lord knows I tried. Check out all the options available to you and decides which will work best, but do it soon. Hugs and good thoughts coming your way from everyone here.
brindle, ((((hugs)))) for you too. You said you sometimes scream out at God. I read somewhere that it's okay to get angry with God, He can take it. (-: I think it's absolutely amazing what we manage to do as caregivers. We are awesome.
Patt, you need to reach out for help or get it. I was trying to do everything and it was killing me. My husband is 66 and now is in assisted living. I had to take a leave of absence from work prior to placing him because I finally figured out I couldn't do it all. I am now back to work and starting to heal. I am slowly starting to live life again. I chose to live with the living.
I am going through the same thing right now. Too much to do at work and home, and always tired. The great support I am getting here does help though, as does humor. I am listening to an old Monty Python skit right now as I type. My husband is laughing.
P.S. I should be doing the dishes right now but I will let them wait. I need to laugh some which is usually hard for me.
Dog and Patt, welcome to the website. I am glad you have found this good place. I know that it changed my life when I found it and gave me new handles on coping.
You're so wise, Dog, to take the laughs and good times when they come and let the dishes wait. FInd and enjoy the little things that will help you through.
Here in Holland we have had a couple warmer days and now have snowdrops and crocusses starting to bloom.
Patt K--Glad you have found this resource--being here will help you through the abyss. The medication for you is fine, but isn't enough, as others have said. You sound like your are burnt out, and rightfully so, with the situation you are facing. As others have said, you need to get some help, pronto. Depending on your circumstances, there are different solutions. If you can afford help or adult daycare, that would be good. If your husband is a veteran, check with the VA. Also, local offices of Aging are good contacts for respite. As Joan said, the contact the Alzheimer's Association for help and support. Good luck, and stay on this website.
Patt & dog, welcome. This site has been/is a life saver for me. I've quit work because hb can't be left alone now. He looks fit and can "fool" folks who don't know his condition for a few minutes. Can't use the microwave or TV remote. Learned this week he has glaucoma in one eye. Coping with Alzheimer's, A Caregiver's Emotional Survival Guide by Rose Oliver and Frances A. Bock is my reading this week, and it is a huge help in working on my feelings and attitude.
First, I want to stress that Patt K. is NOT me with another name!!! <grin>
Welcome Patt and Dog. I need hugs, so I give them ((((((((((((((HUGS)))))))))))))))
I work full time and it is my sanity and my freedom. I love my job, my income, my health insurance, my friends and co-workers - all of whom and what help me to survive. I have been blessed with a 20 year old grandson who stays with my husband during the day. However, once I get home from work, I spend my time with my husband, and I talk to him, though he can't talk back; I bring him some fruit to eat while I have my evening glass of red wine; he dozes while I check in here and check my e-mail; we have dinner, which is now mostly finger food or I help him put the food on his fork and start it toward his mouth and he can then take it the rest of the way 1/2 of the time; I wash a load of clothes and take my husband to the bathroom; I help him to stand, hold onto me while we go to the bathroom where I undress the bottom half and afterwards either re-dress or change his clothing; then help him back to his recliner and help him to sit down. Our evening routine is for me to go back and turn the bed down, get his night-time medicines and put them on the nightstand; get myself ready for bed, then go back to the den and help him up and let him hold on to me while we go to the bedroom. I then undress him, help him into bed, give him his medicine and eye drops and cover him up. Then I check the doors, fix the coffee pot, turn out the lights and shut our bedroom door with the dogs inside with us. He awakens once or twice during the night, but can't get out of bed on his own any more. But my sleep is interrupted nevertheless. The next morning, I wake up, take a shower, get him cleaned up and dressed, and help him into his recliner in the den; I get him his fruit juice and me my coffee (he stopped drinking coffee about 6 months ago and he stopped drinking wine about the same time on his own). I let the dogs out, get the paper and read it and check my e-mail before dressing for work. (I get up at 5:30 and leave at 7:45.)
I am exhausted. I have been exhausted since before Christmas. I can no longer accomplish half of what I used to do in a day. I am holding on to the rope for dear life. My husband was my best friend, lover, and husband and I will be there for him until the end. I am looking out for myself while I look out for him. I never feel anger towards HIM, just the disease. I have my mantra that keeps me going "flexibility" - there is nothing that can't wait so don't rush...if it doesn't get done until tomorrow, the world won't stop turning. My husband is very easy to care for, but he is weak as a kitten. I want to cry when I look at him and see how ravaged he has become with this disease.
The end could happen tomorrow, a month from now, six months from now, or Heaven forbid, a year from now. He needs to be with the Lord and be free - of the disease, of not being able to communicate, of not being able to have a life worth living. Yet I am not ready to give him up. I still can get a hug. I still have a warm body in bed with me. And I know how very lonely I will be when he is gone.
However, I won't let this disease take me down. Everyone: You must make time for yourselves. You must make time for your friends. You must make time for a hobby. You must think about the future and make tentative plans of what you would like to do - nothing about dates, just ideas. I have. I still have my sense of humor. I have Joan's place. I still have my friends. I still go out to lunch with my friends. I go on Caregiver Cruises. I have 5 days of respite each month thanks to my insurance and Hospice Hospital. I will survive. And so will you.
Welcome Dog to Joan's website. Because Joan is out of town for a few days, she will officially welcome you when she returns.
The message boards are only part of her website. For more information, please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. Joan recommends starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a new "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
welcome Patt and Dog - you are among friends that know how stressful caregiving to AD can be and how relentlessly hard it is to lose our spouses. lots of topics and input from those in the trenches -tried and true resources. divvi
Thanks for the welcome and book recommendation. I am a little embarassed as I did post a couple of weeks ago for the first time, but couldn't remember (or find) my user id or password last night. I guess then that posting in a string on "Emotional and physical fatigure" is particularly appropriate for me!
Mary, I am in awe of all you do. I'm not anywhere near where you are, and I hope it never gets that bad. Maybe that's wishful thinking, but I pray it doesn't. I think I do a pretty good job now but I don't know if I could do what you do.
Emotional and Physical Fatigue, fits me to a tee. I am completely drained. My brain is so scrambled. I don't know which is worse that the man I have loved since I was 17, calls me Bitch, tries to choke me, slapped me, twisted my wrist until it is bruised or the thought that I am not bringing him home when he is discharged from the hospital this time. I promised my kids I would come home tonight, which I did, however, my heart is somewhere else. Hopefully, I will be able to sleep & feel better in the morning.
Patt K, I too am at the same point you are. I want to run away to a sunny place with a beach. I can't wait for this time of my life to be over and I feel so gulity. My husband had an appotinment with the Hopkins Dr. the other day, his usual 3 month appointment, and the Dr. recommend that I go to my Dr. and get a low dose of anti-depressent. I don't want this disease to take control of me too, and I still want to believe God for his strength. I feel like my world has fallen apart and there is no joy in my life. I get so frustrated with my husband, he tells me he loves me a zillion times a day and wants to help with everything and you know the confusion that goes along with that and then I get angry. EVERYTHING is hard. I can't afford to quit work or have anyone come to be with him, and I am not so sure he would agree to that. Our adult kids are too busy eve though I have asked for help. So I totally hear what you are saying and and I know exactly how you are feeling. I am 55 and my husband is 59. He was diagnosed 6 years ago.
Welcome to dog. You have found an awesome cyber home.
Kadee, you are not bringing him home are you???? You must protect yourself and your kids from his physical and verbal abuse. Please be safe, we love you and worry. Arms around Susan
Kadee, for safety's sake I am glad to read that your husband will be placed. That was a dangerous situation you found yourself in. Hopefully with him away from home you and your children will have some semblance of a normal life. (((hugs)))
PattK, I can't add much to what others have said. Mary, you continue to amaze and inspire. Patt - the hate feeling is something I went through for awhile and thought it would never end, but it did and now I feel very loving toward my DH. His angry outbursts and my shock and depression and exhaustion and frustration all contributed to feeling like I hated him. Sleep deprivation can really bring you down. Be careful about that. I'm glad you find this site. It is truly a life saver.
Thanks to all for the encouraging words. I am so happy to have a place to vent where I know I won't be judged. RKL, everything you said reminded me of myself. I can't afford to quit work either but I don't really want to! It's the only time and place I get reprieve from being a caregiver. While I work my DH goes to an adult daycare paid for with his disability benefits. I can feel the stress lifting from my body as soon as I leave him. This summer I will continue to take him there at least a couple days a week. I plan to use that time to go to the gym, walk, read a book, clean. Just do anything without interruption!! Yes, I'm having a hard time with my anger as well as my patience. I try to visualize my life after this is over and I know I'll be okay but sometimes I wonder if I'll make it. I know without my faith three things would've happened by now: I'd have left; I'd have killed him; I'd have killed myself. It really is a living hell and I don't know how anyone goes through it without the help of a higher power. Mary, your life sounds exactly like mine and we are both exhausted from our duties and sleepless nights. Food and wine can bring me small doses of comfort but I've gained 45 lbs in the last two years from too much comfort there! Does anyone have this problem - no matter where I go in the house he is RIGHT behind me! He follows me everywhere, even the bathroom. Also, I can't read, watch tv, work on the computer, do the bills, talk on the phone or do anything without him being right beside me. And to make matters worse, he whimpers and moans constantly. Its especially worse if I walk out of the room and he can't find me. It is driving me up a wall! I give him gum to chew and lollipops to suck but nothing helps. Anybody have that similar problem?
Of course we do!!!! I can go to the bathroom alone if I tell him "I'm going to the bathroom and I'll be right back" and do so! If I'm gone more than 5 minutes, he'll try to get out of the chair and come, if he can. He needs to be able to see me when I'm home. I am his anchor. He's lost without me, and there is nothing I can do about it. Yet he'll accept my going to work everyday! I can't explain it. I just deal with it.
Patt, I have you beat - I've gained 50 pounds...and intend to start water aerobics the week AFTER to get it back off. Right now, my sanity is more important than my weight.
We have our recliners and as long as I'm in mine (whether on my laptop, reading my Kindle, or mending or watching TV) he's content. Now, I keep a battery powered toothbrush in his hand, because the vibration keeps him from scratching himself bloody or biting his nails (which he never did before AD).
I want to thank all of you for your comments above! It means a lot to me that I have so many friends here that I can share my situation with. If I can help others by exposing all, then it is worth it!
Ditto here - gained 25-30 lbs. Never get enough sleep. I find he doesn't follow me if I tell him where I am going when I leave the room (unless I am gone a LONG time) and even tell him if I will be on the phone. If I don't, he will hear my voice talking on the phone, think I am talking to him and come to ask me what I said.
PattK - I can beat your 40 with my 50 lb weight gain in two years also! The "shadowing" is something many of us experience. DH is just starting to get worse at that but it's been there on and off from the early days. What approx stage is your DH in? My DH seems to go through phases where he'll have a symptom and then a year or months later it will disappear and new ones appear. He went through a moaning phase for about two years and some other quirky ticks too and they're all but gone now. Believe me, I know how those things can drive you absolutely up the wall! I have so many earplugs around the house you wouldn't believe and took to wearing my IPOD with volume full blast it was so driving me nuts.
The weight gain is a big problem for me as I suppose it is for others in that I get in that vicious cycle of being depressed because of it and eating because of it....
Mary, calling yourself his anchor makes sense. I do realize I am his security blanket and panic and fear set in immediately when he can no longer see me. But the wimpering is insane. I wonder if I could just wear ear plugs to block it out? The medication I started last week is having an opposite effect on me. I'm feeling more anxious than before. I need something that will make me almost emotionless in order to deal with the daily stress. I pray I can find something. Today my devotional said, "Love the unloveable because they need it most." But somedays this can be very hard to do! Patt K.
Patt K., my husband doesn't whimper but when he watches tv he always says okay, okay, okay, like he is answering the people on tv. Drive me crazy, so when it really starts to get on my nerves I put in earphones and listen to music to drown it out. He also follows me around and if I'm out of the room too long he comes and looks for me. If we are going somewhere he;s ready way before we have to leave. The other day I was just getting out of the shower and he opened the bathroom door and asked if I was ready to leave! He had his coat and hat on.
If your medication is making you feel more anxious, call your doctor. Sometimes it takes a few tries to find the right med.
Gracie has given you new life as a comedienne!! <grin>
Patt, a glass of red wine is heart healthy, they tell me, and it REALLY helps me at the end of the day. Sometimes, on really bad days, I might have an extra half glass!
But if the meds you are on have the opposite effect, please tell your doctor and let him give you something else.
This shadowing thing..not so much now but earlier on my DH would ask " where are you?" but he was not at my elbow or in the way.. is that a form of this shadowing thing?
i feel stressed out to and the emotional wear down is terrible i feel that i never get enough sleep and like the others i have to work he has started shadowing i will be in with the computer and hes sitting at his playing his games he'll mumble hes had enough of this and go to watch tv a few min later here he is on the computer again i have him hooked on some of the games so to keep his mind occuppied he is still early on he gets ssd but was turned down for his ltd they said there was no reason he couldnt work he used to do maintance but krpt going to the wrong buildings and couldnt remember how to do the job he was supposed to do i paniced he worked with plumbing and electricty and was afraid hed kill himself with the power thing and they wanted him to really have a problem before he went out of workwhen he applied for long term dis. they changed his job code to make him a custodian instead of a maintenance manager nice huh
PatK : A couple of months ago, I would have written the same words you did to describe my situation. Including the hatred. Now, with my DW placed, I find myself feeling sorry for her, loving her, and wanting her with me. No-I don't understand me either, but, I will say that our emotions are deeply involved in this and some people can handle their emotions better than others. I'm not very good at it.
I still find it amazing how similar all of our experiences are.
Yes, Dean, it is amazing. For so long I thought I was going crazy or I was just the worst person in the world. It is oddly comforting, to know so many others are going through the same experiences. I miss my husband, as well. My strong, loving, selfless protector. Now I protect him.
Welcome to my website. Someone else has initials similar to yours, so at first I didn't realize you were new. No matter how long I do this, I still find it fascinating how alike we all think, especially in the beginning. Guilt over how I was feeling towards the stranger in my husband's body was one of the reasons I started this site. I could not believe that I could be the ONLY spouse who felt that way. I soon found out that almost every spouse shared my feelings.
You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. Since your husband was diagnosed so young, the EOAD sections definitely apply to you.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a new "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Dean, I know exactly how you feel. I placed my DH in mid-January. When he was home I had all those horrible feelings. Now when I go to see him, I can love him so much more now. We sit and hold hands and tell each other that we love the other. I have all the patience in the world with him now. He dozes in his chair a lot. After I've been there a couple of hours, I'll try to leave then, knowing he won't remember. Before if I left when he was awake, he was always asking why he couldn't go with me.