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Alzheimer's
With Mayo Clinic health education outreach coordinator Angela Lunde
Depression common among caregivers
I am frustrated, full of anger. Sometimes I lose my temper and blow. Then I feel guilty. Even when I don't lose my temper, I feel guilty. I am grouchy. I have lost a sense of who I am these days. I grieve. I am sad and I cry, uncontrollable at times. I do not sleep well. I am lonely and I am fearful. Who am I?
I am the spouse of someone with Alzheimer's.
Does this resonate with you? For some of you, I know it does.
Think about it, many of you 'work' as a caregiver 7 days a week, 24 hours a day. And even if caregiving is something you think you do reasonably well, it can be hard to find satisfaction as a caregiver when your loved one's condition only declines. It is difficult to feel good about yourself when everything around you is unpredictable and unreal. It is tough to feel happy when you can no longer find the time to do the things you enjoy and that bring meaning to your life.
According to the Alzheimer's Association, more than 80 percent of Alzheimer caregivers report that they frequently experience high levels of stress, and nearly half say they suffer from depression. It's not difficult to see why.
All of us certainly experience negative feelings from time to time. But according to the Family Caregiver Alliance, "when these feelings become more intense and leave caregivers totally drained of energy, crying frequently or easily angered by their loved one or other people, it may well be a warning sign of depression."
Many of you have written on this blog and shared concerns about yourself, or expressed support to others related to the challenges of caregiving. I want to offer my genuine appreciation. Circles of support, of all kinds, are incredibly valuable. If you have signs of depression, I hope you seek the medical attention you need.
Depression amongst Alzheimer's caregivers is more common than most of us realize and deserves to be treated with the same attention afforded any other illness.
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I live in El Cajon CA. My mother has AZ. My father and a few family members take care of her. She has a very part time caregiver too, however, she does everything she can do to fight this help. It is all so depressing. What I was wondering is this, is there anyone out there who would like to start a support group, or maybe just meet once a month, with my father and I and share your feelings and ideas about ALZ. My father is such a nice person. He is social and needs a male friend to talk to. My mother is at the point where she does not like anyone but family. I was thinking we could meet at the Coco's, on E. Main ST., in El cajon, once a month. My poor dad is proud and would never admit he needs some one to talk to. Is there anyone out there, who would like to get together and share and just be a friend to my dad? He is 77 yrs. old, he loves sports, he was in the Korean War, he loves gardening, he is a nice person and has no friends at all! My mother has pushed them all away with her mean outbursts & stuff. My brothers are a bit of help, but they are family. He needs some friends. PLEASE, if you think you would like to meet for dessert at in Coco's in El Cajon once a month to vent, be friendly, share ideas about ALZ. and just start a support group, please e-mail me and let me know. I am desperate for my father and I to talk with someone. Lisa the a caregiving daughter. E-Mail: lissasunflower92021@yahoo.
This is the first I have been to this site although my 2nd round with Alzheimer's. My Grandmother passed away in '99 after a 10 yr. battle & now my step mother has it. My Father takes care of her and is very stressed out. I live 150 miles away. She is in the last stage. HE has sitters who help and help from her daughter. But he is getting depressed. I'm not sure how to help. I visit and call as much as possible. But your article is right because my Grandpa also got depressed taking care of my Grandma. It is a long hard road. My step mother is abusive, hits and curses. That does not help I am sure. My Grandma never was. (Thankgoodness) I wish he had access to something like this to know he is not the only one. I am sure he feels that way.
My husband is 81, has dementia, emphasema, and COPD. I am 57, still work full-time, and am his only care-giver. He needs help doing virtually everything, but is still aware enough to be left alone (in bed---he's too weak to be up) for a few hours at at time. Luckily I'm able to go home and feed him lunch and am home by 5 in the afternoon. I'm exhausted, but reading this blog is somehow comforting because it reminds me that others are in similar situations. My big worry is what I will do when he can no longer be left alone because we cannot afford long-term care. Most of all, I just don't want to lose him but am seeing him slip away a little more each day. It's hard not go give in to depression.
This is the first time I've been on this site. And...the first time ever I've posted my thoughts anywhere. I am really touched by the stories share. The one from "Elizabeth" from just this past December resonated the most for me. I am Mom's primary emotional caregiver. She lives in an assisted living facility, so her daily physical needs are taken care of. It's her emotional needs and concerns that I attend to. Mom is the tough place of drifting back and forth from making complete sense and sometimes being so profound....to completely getting lost in confusion. I have two sisters who live locally. They do call Mom pretty much daily and one does visit. I am angry with them pretty much of the time because I know Mom needs their love, attention an support and yet there is nothing I can say or do to convince them of the importance of that. Almost out of space...just want to say that in reading through this site, I realize many of you are dealing with much harder situat
Just wanted to finish up my thoughts...I just posted some of them. My heart goes out to all of you. I know this is the hardest thing I've ever done. I know for all of this...it is literally heartbreaking. I, too, am sad and tired most of the time. I got to a major "meltdown" just before Christmas. I knew then that I had to start taking care of myself. I am now seeing a therapist and going for acupuncture. I still have many tough days....but I am better. I encourage all of you to do something...even one thing to take care of you. We all need all the support we can get....so I am sending "white light" to surround those of you that want it...also sending a spiritual "hug".
My dad is an alzheimer's patient. I stayed with him and my mother, who is his primary caregiver. Her main complaint was she could not sleep at night because he would get up and go through the frig. & freezer, etc... she was hospitalized for 6 weeks and I took care of him. i resolved the problem of him getting up at midnight and making a mess and going through the frig. and freezer by taking a paper plate and placing an assortment of dry foods he could snack on. By golly it worked for us, I make sure there is a small night lite on in the kitchen so he can see. No more mess to clean up in the mornings.
My sisterin-law developed AZ in July 2007, She is unable to walk oe talk, she does not recognize family members. She is in hospital awaiting a spot in a nursing home since the fall. My brother has been going to the hospital to be with her daily during meal times as the staff is overworked, she is being tube fed as she takes very little by mouth.It is so sad to see her present state. My concern now is for my brother's health as he is 78 yrs old.A devoted husband for the past 50 yrs.I live in another city 2500 miles from him, Besides prayers, what other ways can I show support?
My husband has had Alzheimer's for 2-3 years now. We are both 78 years old. I am doing my best to care for him but I have MS and have to move around in an electric scooter, so it's hard for me to physically help him. I also find I lose patience easily and get very frutrated at mealtimes trying to get him to eat and take his pills. My two daughters are very helpful and have finally convinced me to get some hired help, so today is the first day for an aide to arrive. We'll see how it works out for her to make him feel comfortable with her helping him with his shower and all. More later. Wanda
I look forward to each new blog - to read and empathize with each one - knowing you are real people with one thing in common - a loved one with alzheimers - I know it's been said many times - but i can't encourage you enough to get the book titled The 36 Hour Day - I just got mine two days ago - and spend every free moment reading it - it explains so much about how the person who actually has this dreaded affliction feels and helps me to understand why my dad does certain things - my prayers are with all families dealing with dementia/alzheimers and those who have before us -
Hi, just a quick update, my husband has Az and has been undergoing radiation for prostate cancer, well, thank goodness tomorrow is is last radiation session, I am feeling a little more upbeat than what I have been, could still use some prayers, he still isn't out of the woods as yet.
Today was the first time ever reading a blog and other's thoughts that are so fa miliar to me. It has been 11 years since my husband was diagnosed with AZ. Life has been continuous change and loss of the person I love. As close as we were, I could not believe he would not trust me to care for him and to help him with even the personal private cares he needed. I contacted the Dept of Aging in our town and they were wonderful! They helped me find day care which we were not able to use as he was too advanced for that but they also gave me leads to other services available. We did see a lawyer early on and did our power of attorney to health care and financial also. We also specified that we did not want feeding tubes, etc. to extend life. I am so happy that we did it when we were both able to express our desires. My husband has now been in a nursing facility for 8 months. I am so relieved that I do not have to make a decision about feeding tubes, AZ patients suffer too much!
Hi Everyone, My mom developed alz in her 50's. I am now 28 and taking care of her a lot to help my Dad. We're starting her in daycare to transition her away from my father slowly. She's starting to be unsafe at home and harder to control when angry so it's not far away. She's starting to have little "accidents" so we know she's entering stage 6. I dont think there is a day I havent cried since she was diagnosed. I've read some comments and our family has agreed not to do anything to extend her life (such as feeding tubes) she doesnt want that and neither would I if I had it. They're already gone. It's a tough road to diagnosis. Medical providers are not trained to look for alz so early. There are many things that it could be at that age that are more common. Just get multiple opinions if you're in doubt. My prayers are with all of you. I know the road well and know the pain and suffering everyone endures losing someone this way.
meditation is helpful to recover from depression
AFter 2 yrs trying to get help for my 51 yr old wife, finally getting validation from a counselor there was something seriously wrong yet being brushed off by our local medical providers who suggested depression and marital discord, I took her to Mayo where they actually paid attention to her behavior and answers to questions, listened to what I had been going through with her then made very quick work of an obvious diagnosis of ALZ, which I had concluded 2 yrs earlier. As I feel I've cleared one hurdle now, I struggle mightily every day with the way I was treated by our local medical providers and the lack of support from my wife's close friends and her siblings, 2 who live in same area. Almost nonexistent, even to call her.
As a wonderful person who would always help anyone, she deserves much better.
What I am thankful for is my oldest son
moved home to help me a month after the June '07 diagnosis. My wife is lonely and slipping fast but my son & I are doing our best.
My wife is 55 y/o. She has what the doctors are calling 'aggressive dementia'. I am the primary caretaker with very little outside help. She is getting to the point that she has to be told to bathe. She is fabricating more and more stories, and constantly repeats herself. Am I wrong to be looking for long term care. Right now, I'd give almost anything to have some relief.
As some have stated in other blogs, I love
her beyond imagination, but have told my doctor that I have to have some relief.
How does one go about finding out how to move an Alzheimers patient from home to a full time care facility? Yes, God is not going to put more on us than he's going to see us through, but right now, my wagon feels fully loaded.
Hi All,
My Mother has AZ. She is in the last stages. She is in a nursing home for now due to infections in her bladder and lungs. They had to put a tube in her stomach so she can eat. They now tell us that even though she is getting feeding through a tube, her body is not using the nutrition. She has hadthe tube in for almost three weeks now. She is basically starving. She will not eat more than a few bites of food. She just will not eat. We now have hospice called in. Our problem is do we remove the tube and then she will die soon, or do we let her stay on the tube and have her go slowly. The slowly part freakes me out. Are we keeping her around just for ourselves? Any advice would help. The Dr. said she is going one way or the other. Do we let her body go naturally or keep her on the feeding tube till the end! PLEASE HELP! God Bless.
God loves you all, angels, who take care of the AZ patients.
"Lo, I am with you always, even unto the end of the world"
I don't know anyone who has AZ but your love touches my heart. May God bless you all.
A special 'Thank You' to the Mayo Clinic and all the doctors and staff helping the Alzheimer patients and families! You saved me and gave me hope for dealing with the overwhelming challenges of caring for my mother with alzheimers. You showed me how to begin to think logically and remove SOME of the emotions that clouded my thinking and my life. Thank you for all you did and for all you are doing now to further the research and to help those caught up in this disease. Consider yourselves all hugged!!!!
This is tough. Mom had Alzheimers for 12 years until her death in 2002. I have spent the years since her death re-building, re-becoming myself, letting go of the enormous anger and pain of seeing her slowly drift away from me,from herself and become a different person. I was so angry!For so long!Mom and I were close-best friends, confidants,sisters, Mother and Daughter-we supported each other through all kinds of life's events and trials. What a blow to us both when we realized she was drifting away into the strange, lost world of an alzheimer's patient.I begged my brothers for help. They could not deal with losing Mom to this disease-I had no choice!So, we lost our mother to Alzheimers,and we lost our family as well.What an insidious disease. It has taken me these years to begin to live my life, see colors, laugh, let go of the anger and sadness.Bless you all who are living with this now!
My mom has AZ and is in the beginning stages.She lives at home with my mentally disabled 52 yr old brother. Mom is 80. I retired early from teaching to take over her financial/medical needs. This is by far the hardest thing I've ever done. I went recently to a caregivers' luncheon and the speaker said it's a given that most caregivers of AZ patients will become depressed. When she named some symptoms, I knew I was. So my doc agreed to put me on EFFEXOR and it's helped some.
My brother is also my responsibility. My other two brothers are dysfunctional in that one is manic/depressive and the other addicted. I have a normal sister,but she lives four hrs away. God, my husband, and dear friends are what keep me sane. Regular exercise is vital.
Keeping healthy is a high priority with me, not only so I can care for my family, but also that I'll be able to enjoy my life after caregiving.
I can relate to what has been said. I just turned 60 My husband travels with his work. I quit my job to stay home and take care of his Mother. He has 5 sisters who promised to come and stay every so often to give me a break. Will it hasn't happened. I was so angery with them. I finally decided it didn't do any good to ask them for help because they always have an excuse. They don't even come to see her on holidays. They all live in the same city as we do. I don't want to take it out on my mother en-law or my husband so when I get upset I just remember I'm doing this not because I have to, but because I want to. One of these days they will be sorry they didn't make time for thier Mother when it's to late and she doesn't know who they are.
I just wrote the previous blog - no name - sorry - I just wanted to add that my heart aches because in spite of the love we have for those we are caring for - there are moments of anger and stress - but I keep reminding myself of the selfless love our parents had for us - and all we put them through - and that they need our understanding and love now.
My heart aches for everyone who is a full time caregiver - I too am one. But the beautiful thing is we know that they are getting the best quality care possible for as long as we are able to give it. My dad was diagnosed 2 years ago with dementia of the ahlzeimers type. My sis and I took turns driving 80 miles a day for over a year to give him meds and see he had good meals - we tried a nursing home - they are wonderful - but the quality of life wasn't there. So now we live with dad full time - it's only been six months - and I wouldn't trade places with anyone - in spite of the ups and downs.
God bless you Anna!
I am a relatively new caregiver. My husband, age 60, is in the moderate stage of frontal temporal dementia. He can't work and I quit my job to take care of him. I already find myself losing patience and it's going to get a lot worse. Sometimes I feel like we are just waiting around for him to die (he doesn't know his prognosis). Then I figure I'll just die right after him. I have to remind myself that God is with me and "I can do all things through Christ Jesus who strengthens me". It doesn't mean it isn't hard, however. I need to develop more supports, I guess.
I left my job because I was working the night shift and they had me taking care of Alzheimer's patients in a locked unit. A little after a year, I got tired of the spitting and biting and throwing feces at me. I hope we find a cure soon.
My mother's mother had Alzheimer among other diseases. She has caregave for more than 20 years. Because of my health I couldn't help her. She really needed someone to give her at least a break perhaps two or three hours four times a week. She was basically was on her own with no one to let her rest. I think all caregivers need some help even if it comes from family, friends and mobile nursing staff and other support could happen if someone could just sit for them while the caregiver can rest.
I understood my grandmother had Alzheimer's. My mother didn't have the support she needed. She was basically stuck in the house. She hardly had any social life. If someone could at least find a family member or friend, that would refresh the person is the caregiver. Please respond.
How can you prevent alzheimers? I understand coming into to contact with alumium is one cause. What else can be done to avoid alumium and other problems?
Angela - I see myself in all that you wrote. When we were in the process of determining my husbands disease (AZ) I cried every time we went to our Dr. Thank God she put me on EFFEXOR, I don't believe in taking med.s but I don't think I could make it without it. I do hope to get off in a few months. This disese is worse than any other, as it robs us all of any sense of normality. We need to find a cure soon! God bless all the caregivers, lets hope our nightmare is worse than our loved ones that have AZ!!!
My story is a long one and there isn't enough room to tell it all here. This is a brief synopsis. There are 4 people in my household, my husband, my brother, me and my mother. My brother,(63) has brain damage and my mother,(88) has Alzheimer's disease. We are all over 60. Its up to me and my husband to be caregivers for both my mother and brother. My brother has been with us for 18 years and my mother for 14. I'm so tired.
I can definitely relate to this. I am caring for my mom and have found that it takes a lot of patience, love and understanding to deal with her. I had already been diagnosed with clinical depression several years before I began caregiving so I have to balance my illness with Mom's needs. It's hard and I have to be vigilant to avoid a relapse.
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