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    lauramay6 posted:
    Hello All! I'm new here, and looking for a sympathetic ear. My mother was diagnosed with Alzheimer's about 4 years ago. I HATE this disease and what it is doing to her and my father. She's 80 and he's 82 and still insists on keeping her at home, even though it is wearing him out. Lately, Mom seems to be sighing a lot. Her doctor has found nothing wrong, and many common causes of shortness of breath have been ruled out. Her doctor says it is Mom's way of letting us know she's feeling bad, cause she no longer has the words. Has anyone else heard of Alzheimer's patients doing this? I'm thinking I need to join a support group or something. This disease really takes it's toll on people...and I still work full time, and live 50 miles away from them. Thanks for 'listening'. I appreciate ANY feedback!
    cjh1203 responded:
    Hello Lauramay,

    I'm so sorry about the situation with your parents. It's so common for a spouse to refuse to get any help with caregiving and, as you said it takes a huge toll. We had a case manager for my uncle, who had Alzheimer's, and she said that what often happens is that the caregiver will end up having a health crisis and then the family is in turmoil, trying to figure out how to care for the Alzheimer's patient, who is completely overwhelmed by the absence of the spouse and the upheaval in his/her life.

    Your father needs to know that if he doesn't take care of himself and accept some help, there's a good chance he'll reach a point where his own health prevents him from caring for her.

    My suggestion would be to contact the Alzheimer's Association chapter closest to you and arrange to talk to someone about this, and see if they can refer you to a case manager. Joining one of their support groups could be a tremendous help to you. Even though you probably feel isolated because of this situation, you will be surprised to see how many people have dealt with the same things you and your family are.

    Best wishes to you. I hope you'll continue to post here.

    cjh1203 responded:
    Hello again,

    I forgot to say anything about the sighing you mentioned. I have read that this is common in the later stages of Alzheimer's when, as your doctor said, the patient can't communicate very well, and the person's health starts declining. I don't know how far along in the disease's progression your mother is, so that may not apply to her. Maybe she just sighs for the same reasons the rest of us do; feeling unhappy or frustrated, for instance, but more often.

    Sorry I can't tell you anything more definitive.

    davedsel responded:

    Carol has already given you excellent advise as usual. I just wanted to welcome you. We are sympathetic and understand the affects of Alzheimer's on the patient and the family in this community.

    My dad is in a VA nursing home due to Alzheimer's. My father-in-law passed away this past February and he had Alzheimer's. My mother-in-law did take care of him to the end. She did have Palliative Care for a few months which helped her take care of him, and then finally Hospice Care who helped him remain comfortable to the end. You may want to see if Palliative Care would be a good option for your parents.

    I understand your father wanting to take care of your mother, but his own health will suffer. Can they get some type of health care aid coming in on a regular basis? This, along with the Palliative care, could ease your father's burden for a few months. It may come to a point where an assisted living situation may be the best option, and they may be able to live together in that type of facility.

    I pray you can get answers and resolutions soon.
    Click on my username or avatar picture to read my story.


    Deborah_107 responded:
    The others' advice is all spot on, you should join a support group. I "thought" I was too busy, because I had my son who had a health condition that got exacerbated by the stress of seeing his grandmother's decline. The faster you can get support coming in, the better, too. My great grandmother went into convalescent care with AD, and my great grandfather passed away shortly after. My mother just passed a couple of years ago, from it, and she was diagnosed too late in the game to be assisted by meds. For your own help, though, go to the support groups. If I'd known sooner, I'd could have had a DNR in place that would have saved her a couple of years of nasty falls. She forgot how to walk or even balance and how to swallow at the end. Falls accelerate the severity of the Alzheimer's, and your dad won't be able to be picking her up, if that becomes an issue, so if it starts getting to that point, she should be in assisted living. God bless you in your decisions and in how to help your dad face getting help.
    Deborah_107 responded:
    I forgot to add, having Power of Attorney in both medical and legal areas is a must, and you always have to carry the DNR paperwork, in case it hasn't been filed at the facility you're taking her to. If dad can't make decisions, someone has to. Just make sure that if you have siblings, you're all on board for this, and you stay in contact with them over everything. Email was a great resource for that. You don't want to run into squabbles, and if they don't realize how badly off she is, they may be in denial over the things that really need to happen. My mom's was fairly early onset at probably 62, when I started noting things. She passed at 73, so it's never too early to have these things in place with someone who has AD.
    SunFox replied to davedsel's response:
    John V: to Lauramay6: You have received outstanding response from clearly experieced caregvers and providers. By all means prtect your dad's health. I have been a caregivr for the past nin years to a wife of 63 years who has just passed. I still hellp those in a caegiver group here in Sun City AZ who meet every Tuesday morning to share inform ationfrom technical presenters. One of those is a Maribeth Gallagher who would not accept the medical opinion "No brain no pain". working in the environment of Hospice of the Valley she studied patients who were "Sighjing". Her empathy could sense their pain. She devloped a chart that caregivers could carry to help them be more sensative to the subtle indications of pain. She developed a simple Tylonol "pain vrification" proticol that proved effective in demonstrating to skeptical doctors ad nrses that there was pain. She would be gratified to comunicate wit you about your mom's condition. Hopefully you or a friend can reach her at her internet address . my heart is with you... John
    BPDcaregiver responded:
    Dear Laura,
    You definitely have my sympathetic ear. I am in the process of arranging separate living and support systems for my husband of 54 years.
    Here are a few points that really have to be addressed (emotions are so strong for caretakers that practical solutions are often overlooked):
    1. Home is home. Aside from emotional attachment, there is great fear of the unknown new lifestyles that have to be made, for both patient and caretaker.
    2. A medical support team has to be established through the family doctor, the Alzheimer Society or your nearest community health care services.
    3. An honest knowledge of financial availability has to be discussed.
    4. Your father is aging and becoming fragile himself and it must be realized that should he,the caregiver break down,your Mother will break down totally.
    I have BPD and just come out of the hospital for the second time in ten months. I thought I could take 24/7 care of my darling husband, but I could not. Now I am being supported by professional, financial and family members. We have to start living apart and it hurts like hell. Yet arrangements are in process and perhaps in a month or so, the earthquake will have stopped.
    My heart goes out to you, my prayers are with you and may you find somebody who can help your father make the necessary changes. Family love makes us deaf at times, so professional intervention is critical.
    Judith L London, PhD responded:
    So sorry for the delay, lauramay. I've been so busy trying to downsize and move.

    Please read my book, Connecting the Dots: Breakthroughs in Communication as Alzheimer's Advances. The sighing is definitely a communication, and the book gives you practical tools to deal with that. People with Alzheimer's have feelings, but they don't understand what makes them feel that way. They also have unconscious memory and get impressions of what's going on without realizing why. Almost all behavior problems stem from the frustration of not being able to communicate, and we can help them.

    I also urge you to contact community and religiopus groups - they often have volunteer help for caregivers. And, there are still a number of fine memory care facilities that accept medicaid and offer respite care for the caregiver so that even if you are not ready to place your mother in a facility, she could stay there short-term while you have a much-needed rest.

    It's tough to deal with siblings in denial, but keep reporting the facts to them, and definitely find an in-person or other support group for yourself. The Alzheimer's Assn is the key.

    Keep on checking in with us,

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