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• Housecall
• Alzheimer's caregiving
• Living with cancer

• August 17, 2009 11:54 p.m.

  I wanted to share my friends story with everyone.. she is a dear friend who has a disease called wegener's granulomatosis. She had insurance through her hospital she worked at for over three years.. When my friend found out about her disease, she had to quit her job.. She went on long term disability and was paying $495. a month to cobra insurance. After 18 months, cobra dropped her coverage due to an 18 month contract. My friend still has wegener's due to no known cure.. Her medicines run around $1400 a month without insurance.. This does not include the chemo drugs she has to have, which runs her now $75. instead of $15. She has tried to find help.. She gets Social Security Disablity.. But that does not pay all of her bills and medicines.. I really am tired of all the phone calls day after day from people trying to collect more money.. More test from Doctors who can't understand that she no longer has insurance.. I am mentally and physically drained not only because of my part in her healing, but day after day of watching her stress over how she can pay for her meds and doctors.. She can't get medicaid, medicare, etc. until the end of this year.. Because of no help out there, she has become very depressed. I do not know how to help her. Since she has no insurance, she can't drive anymore because of a defibulator transplant, new outbreaks, she can't work anymore.. She has no family to help her.. So, I have become her caretaker, it is overwhelming sometimes..

  - Molly g.

• July 21, 2009 3:22 p.m.

  i appreciate your blog on this subject. I am now faced with caring for my mother who is only 60 years old and I am 34 with bipolar disorder. My family members are not available except my twin sister who's time is limited for this matter. I have help from a friend but my stress and anger is telling me she will not last long, she's gonna get tired and burnt' out from helping with my mom, i am grateful for her don't get me wrong, but I am reallly angry with our healthcare system. It is very scewed when it comes to long term care for disabled adults. Everything is too expensive and Kiasar Permanente told me to go down to Social Services to get medical when this hospital is a big entity and can't provide a home for my mom? It's ridiculous and scary and I am very mad about this. i have school and a life to live and now I feel it's been ruined.

  - Jenny

• June 27, 2009 2:03 a.m.

  I don't know what to do! I am taking care of my grandfather that I barely know (have been for almost two years) it seems his children don't want anything to do with him and he says he wont tolerate a home...I take one day a month to go out with my very tolerant fiance....but it doesnt seem enough...I don't sleep (right now I'm awake at two am and my fiance is sleeping) my doctor said I was stressed and wanted to prescribe me narcotics to make me sleep but I dont want narcotics....there is no help here...I wish there were...depression is seeping in :(

  - spenceralyssa

• June 10, 2009 9:32 a.m.

  i've taken my mother in two years ago when her alzheimers progressed. i had to hire 24 hour care. my husband and i gave up half our space to make a small living area to try to keep our privacy as much as possible. my siblings completely abandoned me. my mother has been extremely lucky with her care. now i find myself completely empty and it's taken a strain out on my marriage. we've lost our life somewhat and can't remember what it was like to be free anymore. i'm having trouble with depression. any help out there?

  - anonymous

• May 19, 2009 2:19 p.m.

  I think w/ such a lack of community that exists in most places (in America anyways), it is extremely challenging to be a caregiver. I would say don't be a martyr--take care of your own mind, body and spirit. Get respite and professional help if need be. What I've seen happen so often is that one person in the family gives and gives and gives, while the rest stand by. Then, when the ill person dies, the caretaker starts to suffer various illnesses. There is nothing worth your health and sanity. Help, but be mindful of where you begin and another person starts. WHen you can't take anymore, say so. It's a tough issue.

  - Nancee

• April 21, 2009 8:40 a.m.

  I wholeheartedly agree with Dr. Creagan's comments. As a gerontologist who primarily works with caregivers of Alzheimer's sufferers, I see the statistics - half of all caregiver die before the person they are caring for! I therefore strongly advocate stress management in a 2-pronged approach. First, anything that I can offer the caregiver that will simplify their life is indeed making their life less stressful: support groups, adult day care, home health, etc. Second, are things that the caregiver can do that will work directly on the stress in their body and eliminate it: simple exercise like walking around the block, or prayer and meditation. However the most powerful stress buster in my arsenal is 'guided imagery'. For those that don't know, Guided Imagery is a mild form of hypnosis, and extensive research has demonstrated its effectiveness over and over again. In fact in studies where Guided Imagery is one of several modalities, it invariably ends up being the most effect of all them. The beauty of it, is it is easy to use, you need only a quiet place for 15 minutes and a CD player or computer.

  - Donahue Vanderhider, MSG

• April 2, 2009 1:45 p.m.

  My mom is in stage 4 cervical cancer that has metastisized to the lymph nodes...Long story short...she moved in with me for 4 months right after the diagnosis...She decided she wanted to go back home and wanted to take care of herself...well she has since then went downhill...she has lost 30lbs(she weighs 88lbs now) and has began smoking again...she started to get very depressed and had a psychotic breakdown...she has been in a psychiatric facility for 2 weeks now...she has no will to live and has been trying to kill herself....Well they are releasing her to me tomorrow and she is going to come live with me again...but my husband does not want her here...what am I suppose to do in a situation like this...he is completely unsupportive and is bold on her not being here...my moms life is limited and she cannot take care of herself....I just need some advice on this situation...it has me completely stressed out and I have enough on my plate having to take care of 4 children at home...thanks for reading...

  - Steff

• March 31, 2009 7:09 p.m.

  In response to Nancy, I too am coping with my mother being admitted into a long term care home 3000 miles away! I have siblings in the area, so thankful for that, but they do not understand how difficult it is for me to be far away. I visited her during her transition into the home, and spent 8 days with her for all meals, but had to leave to return home. I am feeling depressed and extremely sad about this - and trying to cope. The sad part is I keep thinking of how my mom 'used to be'..very active and healthy. She has a degenerative disease, that is ravaging her body and leaving her weak and in pain. She is cognitively fine and very aware. I am wondering what to do.

  - KAREN

• March 20, 2009 12:31 p.m.

  My husband was diagnosed with stage 4 non small cell lung cancer, last year, is on the chemo rotation, is insulin dependant diabetic and I'm it for his care. Can't leave him alone overnight nor very long in the daytime and that presents a problem; so I am looking for a person who can come. Might have to hire someone so I can have a weekend away, once a year.

  - Patsy

• March 19, 2009 12:14 p.m.

  Marlene, There comes a time when you just have to tell your Mom "No, not today or tomorrow. With your health, I'd be scared for you living alone" After I had Mom move in, due to moderate-stage Dementia, she'd want to go home. She'd insist around 4pm daily. I'd tell her, "It's and 8 hr drive and much too late to go today. I've got work scheduled for tomorrow. We'll go another time, just not now." Eventually we did go back to visit my brother, who still lives in the family home, but I brought her back to my home after the visit.

  - Betty J

• March 19, 2009 10:52 a.m.

  Over my career I have cared for many ill and dying people to allow them to stay in their homes. Now that I am disabled, others expect me to continue to care for them and nobody helps me, including my spouse of 40 yrs. Any ideas? Yes, I've asked and been turned down

  - Mary Lake. MS, BSN, RN

• March 18, 2009 8:41 p.m.

  As an independent caregiver for over 40 years I can relate to the need to take time out for us. At the age of 68 I am still taking care of others. Time away from the clients has to be or I get "burned out". That is not a good thing as a caregiver cannot give the right kind of care if that happens and it is important that a caregiver realize when that time is at hand. It is time to shorten their week by a day for awhile or if possible to have a sub come in, take a week off. It is hard as I well know, but it is as important for the client as it is for the caregiver.

  - Pat

• March 18, 2009 5:14 p.m.

  In response to Dotty, has Zoloft ever been suggested for your husband? It has done wonders (along with Namenda) for my husband's mood.

  - Letha

• March 18, 2009 3:45 p.m.

  Caregiver stress is something that I, as an RN for the past 28 years, was unaware of, until I was told that I had it by a colleague. She could sense it in my voice over the phone! Caregiving is one of the most difficult and energy-stealing things to have to go through when dealing with older parents. My mother is 88 y/o, in a nursing home, 2,000 miles away from me, and has a plethora of problems (dementia, legally blind, MRSA, c-diff, had bilateral endocarditis, and inadequate pain control following a total hip replacement which caused delirium). My siblings are all local and they have been good, but they do not see that I undergo a different kind of caregiver stress being so far away. One thing that I know for certain, is that one sister in particular is undergoing extreme caregiver stress but will not acknowledge it. This has led to her being very distant to our mother, non-communicative, and embittered. For all that are reading this, I would advocate talking to someone who is not involved immediately with your situation, someone who can be objective. This could be a professional counselor, therapist, or case manager. It isn't enough sometimes, to work out, eat right, and go out and have fun. You need to be aware that you have it. By not recognizing caregiver stress, you risk losing precious time left with your loved ones by carrying a huge chip on your shoulder due to being so burned out that the loved one is 'blamed' and no relationship exists any longer.

  - Nancy

• March 14, 2009 8:08 p.m.

  I am a lone caregiver for my husband, who has Alzheimers. My kids have disowned me, and I have no one to help me. He used to be a very sweet man, now he cusses at me and is nasty to me 24/7. I had him in a Nursing Home from 1/9 to 1/22, but had to bring him home, as I couldn't afford the $100 I had to pay. Does anyone have any suggestions where I can get help. The Alz Assoc won't help, they say I am doing everything they would normally do. I take Antidepressants and sleep aids, which I don't like doing, but have to, to survive. Thanks for any advice you can offer. He's also has had 10 brain surgeries for Hydrocephalis, 4 heart attacks, and 3 strokes.

  - Dotty

• March 13, 2009 6:28 a.m.

  Fortunately I require very little sleep. I never have, but now I find it more important to get some "rest time". That may be just going to the store, a quick chat on the phone, putting Mother down for a nap or going out to feed calves at the barn. It can be anything that gives me a break and lets my mind wander elsewhere for a few minutes.

  - Janean

• March 5, 2009 8:42 p.m.

  MY DAUGHTER DOESN'T UNDERSTAND WHY I AM NOT SLEEPING NEXT TO MY LATE STAGE CANCER HUSBAND NOTING THAT WE HAVE ALWAYS SLEPT NEXT TO EACH OTHER. I EXPLAIN THAT IF I MOVE, HE WAKES UP. AND I FOCUS SO MUCH ON HIS BREATHING THAT I CAN'T SLEEP. I NOW SLEEP ON THE COUCH. IT IS THE ONLY WAY WE CAN MANAGE TO GET A BIT OF SLEEP. WE BOTH NEED IT. NEVERTHELESS, WE SPEND MOST OF OUR TIME TOGETHER AND TRY VERY HARD TO MAKE IT QUALITY TIME.

  - ELLEN BORN

• March 5, 2009 10:03 a.m.

  Although this is true why is it that we disregard our health and push our limits? Why do we think we are immune to burnout until we are past the point? As a nurse I see it all the time and have recently experineced it. Wanting to do it all had a huge affect on my health. After a two yr absence I have returned to my job with a differnt outlook. Self care and happiness make me better at what I do. Too bad I've only learned this after 33 years of nursing. Why aren't we teaching this in school to our care givers???

  - diane

• March 5, 2009 5:05 a.m.

  My husband has been disabled for 16 years. He is relatively independent. I take several trips per year without him and some with him. He encourages me. I also work out and get plenty of exercise. We have some interests in common so we have lots to discuss. I try not to dwell on the negative aspects of our lives. I am not a good sleeper but nap, if needed, shortly in the afternoon.

  - Martha

• March 4, 2009 10:53 a.m.

  I have Fibromyalgia and suffer from it daily. This past year has been so stessful with my husband losing his job of 35 years, my son who is a quadrapaligic having a 3 month battle to live from an infection in his body and being in intensive care for 6 weeks, my Mother's 6 week stay in the hospital and then losing her, another son who died unexpectedly at 39, and now preparing to lose my father in-law who is seriously ill. I had a panic attack last week trying to deal with seeing my father in-law's condition and knowing I have to go to this level again and go through another death. I am afraid and fearful this panic attack will stay with me and will be hard for me to face more crisis in my life. I work full-time also with trying to handle everything in my life. I have always taken care of others but my body and mind are shutting down. I need to stay strong for my son who is a quad as we have had many crisis in his life and will continue to. My husband suffers from severe back pain also and has had surgery and seems depressed from his back pain and the pain we have been through in our life. Any suggestions? I feel fragile.

  - Jan

• March 4, 2009 8:24 a.m.

  Marlene, Have you considered talking to a doctor about something to help you mother's mood? Perhaps a mood elevator or an antidepressant. People reach an age where they may be rational, but physically unable to maintain. They have lost their independence and resent this terribly. Loss of their independence is a major void, emptiness, which can be compared to that of a loss of a loved one. Depression can be expressed in a number of ways, not just crying. All the stages of grief are present. Talk to a good gerontologist who can recommend the appropriate dose for the elderly to minimize side effects. Talk to nurses at local hospitals and see who they recommend, believe me they know the good ones.

  - Rosie

• March 4, 2009 6:47 a.m.

  I may have a unique problem in todays world ,I am a caregiver for my 88 year old Mom,and I am having a great deal of difficulty in convincing to stay with me. She lives alone in a trailer park in Florida and has literally no support system there. In the last several years, she has had bouts of congestive heart failure that forced her to live with my husband and myself for six monthes at a time, but she is so fiercely independent, that I am left with no alternative but to drive her back to Florida. My friends and other family members tell me that at her age, I should insist she stay with me, but as long as she is able to rationally decide to go home , I can not in all conscience refuse her.

  - Marlene

• March 3, 2009 9:50 p.m.

  yes how i can relate. what i do not understand is why so many children throw their parents away and go on with theeir everyday lives. I am that caregiver of a preious man whom i have looked after for several years now he has only me to love respect and adhere to his wishes,so at this time i have made this my mission not only has it been very hard as i have had really no one to help me i gave up my job so far it has been three years. i think i understand a little more now as i am not his child nor part of his family thankfully i worked for him before all of this started and he made all of his wishes known to me. I love him as my own father.there are times when i have been so exhausted that my own health was put into jepordy.i finally have doctors nurses healthcare professionals that support me in what i am doing and i am finally able to breathea sigh of relief and get the rest i need . what amazes me is you can throw your loveones in a home or whatever you want to call it and they get paid thousands of dollars yet i do not get a dime and only through the grace of GOD HAVE I MADE IT THIS FAR .i will never throw him away i will always be there.

  - kristal e

• March 3, 2009 8:03 p.m.

  Yes sleep is very important. I have been caring for a husband for five years with vascular dementia. His short term memory is a challenge for him. he goes to bed at 6p and gets up 3/4 times night to go to bathroom. I am a light sleeper so I wake up but I go to bed early so I get eight hours of sleep. I get up early in the morning and relish that time alone to just think and veg.

  - Ruth Hamman

• March 3, 2009 7:09 p.m.

  this is a note to AJK, whose husband had a stroke 5 yrs. ago and stays up 'till 2am to watch t.v. and wants her to stay up with him. Learn to say "no". Perhaps make it a Friday/Saturday nite thing. You have to look after yourself and if he was in a care facility, he would not be allowed to do that. Perhaps "no" would also benifit him in many other ways. As the saying goes: sometimes we have to be cruel to be kind, so be cruel to yourself and to him and get your proper sleep. Actually, it sounds to me like you are crying out for help and my dear, you are the one that has to help yourself. You have a very heavy load. Get hubby to do the wash and fold the clothes from the dryer. If vacuming is too much for him, get a swiffer sweeper and a swiffer duster. Plus, He needs a hobby.How about a cooking classes? My mom was dying and she taught my dad to cook when he was 80 years old and he loved it, I could tell some funny stories about his procedures. They were very surgical. His pies were great!! There are loads of ideas, get crackin' and all the best to you both. Hope you both get a proper nights sleep real soon. Margaret from Canada

  - margaret