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• Housecall
• Alzheimer's caregiving
• Living with cancer

• November 20, 2009 4:49 a.m.

  FOR SOMEONE WHO MISSES FAMILY WHILE LIVING IN A RESIDENCE, I HAVE FOUND THAT IN ONE TO ONE CARE THAT I HAVE PUT TOGETHER A THREE RINGED BINDER WITH A PERSONALIZED FRONT PAGE "ESPECIALLY FOR", THEN THE PHOTO OF THE PERSON WITH A NOTE ON THE BOTTOM...WITH LOVE FROM YOUR FAMILY AND FRIENDS. THEN, FAMILY MEMBERS & FRIENDS SEND ME A NOTE WITH A PHOTO ATTACHED WHICH I PRINT OFF, PUT IN A PLASTIC COVER..THEN WE READ THE NOTE, LOOK AT THE PHOTO AND CHAT. THE RESIDENT KEEPS THE PHOTO BINDER TO LOOK AT IN THEIR OWN TIME...IT SEEMS TO ASSIST IN HELPING ONE FEEL THAT THEY ARE STILL INVOLVED IN THEIR FAMILY'S LIFE, ARE LOVED, THAT THEY MAKE A DIFFERENCE TO FAMILY & FRIENDS - IT ALSO ASSISTS WITH NOT FEELING SO ALONE IN BETWEEN VISITS. THIS IS JUST ONE INSTANCE WHERE THIS WAS HELPFUL, EACH INDIVIDUAL IS SO UNIQUE AND ONE MUST CONSIDER OF WHETHER THIS WOULD BRING A POSITIVE TO THAT PERSON. IT SEEMS TO HELP FAMILY STAY CONNECTED BY SENDING UPDATED NOTES AND PHOTOS, GOOD THERAPY FOR ALL. IT ENABLES ALL TO APPRECIATE, ACKNOWLEDGE AND CELEBRATE OUR LOVED ONES/FRIENDS WITH ALZHEIMERS - FOR US ALL TO STAY IN THE MOMENT, APPRECIATING THE PERSON BEFORE US, THE MOMENT AT HAND AS IT IS AND BE GRATEFUL THAT WE CAN SHARE IT TOGETHER.

  - LINDA

• November 19, 2009 8:34 p.m.

  MY HUSBAND HAS ALZHEIMERS FOR 5 YRS. NOW..IT'S GETTING HARDER ON ME AS WELL AS HE. HIS SPEECH IS HAVING SOME DIFFICUKTIES TALKING AND OF COURSE FORGETTING AND EVEN NOT FINISHING WHAT HE STARTED SAYING TO ME OR OTHERS. HE 64 HAS HAD THIS 5 YRS. WE ARE MARRIED 43 YRS. WENT FOR 3 YRS BEFOR THAT I WAS NOT YET 15YRS. I LOVE HIM BUT I GET SO ANGRY AT THIS DESEASE I READ SOME OF THE OTHERS AND UNDERSTAND WHAT A CARTAKER GOES THROUGH NOW. I HAD TRIBLE-BY-PASS 2 YRS. AGO AND IT'S HARD SOMETIMES..I HAVEN'T PUT MYSELF FIRST AT ALL NOT DOING WHAT I SHOULD WITH SLEEPING,EATING AND DR.S I JUST MAKE SURE HE IS BEING TAKEN CARE OF ALL THE TIME. I TRY TO MAKE LIGHT OF THINGS BUT AT TIMESW I CRY WHEN HE ASLEEP SO HE DOESN'T SEE. MY QUESTION IS ..HOW LONG IS IT OR DOES IT TAKE FOR THIS ILLNESS TO GET WORST OR WHERE DO I TURN FOR HELP ...THE INSURANCE DOESN'T COVER ALOT..AND WE ARE ON A SET INCOME ..CAN I GET FOOD STAMPS? OR ANY THING ELSE THAT WOULD HELP US ALITTLE. I JUST FOUND OUT ABOUT HEALTH CARE I'LL BE PAYING 230 STARTING JUNE WHEN HE TURNS 65 .HE ALWAYS TOOK CARE OF THE BILLS SO I NOW TAKE CARE OF EVERYTHING AND I REALLY DON'T UNDERSTAND SOME OF THESE INSUREANCE OR MEDICARE STUFF. WHAT TO DO?????TKS FOR YOUR INFO AND HELP JOANNE,FL.

  - JOANNE

• November 9, 2009 1:36 p.m.

  My 83 year old wife with 7 years into Alzheimers has recently started to eat very little. What should I do? I am the sole caregiver. I have two hours of hired respite twice a week. I am one of those who do not want to give up caring. I placed her in an Alzheimer unit for 5 days with some disasterous results.

  - kenneth

• November 6, 2009 8:30 p.m.

  This is for Sally. We live in Bryan, TX and we have the Rose Home here. I had to put my Mom there this week and though I agonize over if I have done the right thing(she is heself, sometimes), they are houses with 3-5 people and at least one nurse's aide there 24/7. The cost is much less and the care is great. She is realizing what has happened and is very angry. Tomorrow she may or may not remember. I love my Mom and I just cannot be there to protect her all the time. It hurts soo much to have to do this.

  - SJ

• November 4, 2009 1:24 p.m.

  people with Alzheimer's are not "crazy" and they are not children and it is counter productive if they are treated in that manner. Remember that they have lived adult lives and the person is still inside and their feelings remain with them.Treating them with respect and dignity -- and love --will be reflected in their behavior. They respond happier and calmer, and with fewer outbursts from frustration. Their increased feeling of security improves the life of person and caregiver. The 11 years that my husband and I shared his disease, as chronicled in my memoir (Everything Will Be Alright: an Alzheimer's memoir) shows how awakening emotional memories made it possible for us to grow closer than ever to each other. Being a caregiver is not just about physical needs, but the psychological needs as well. I donate proceeds from my book to Alzheimer's research.

  - glory

• November 2, 2009 8:02 a.m.

  My mother has Dementia. She has started declining quickly. She is hungry all of the time and craving sweets. She will eat dinner and say she has had enough then in just a few min she says she is hungry. When we give her something else she says "what's that, I can't eat all of that" then she does. She has also been craving sweets. She is insulin dependent diabetic. None of her doctors have ever heard of this. We keep fresh fruits and several healthy snacks around for her. We have tried bulkey foods, pasta, rice anything to fill her up. She is constantly hungry and gets very aggitated when we do not give her something to eat even though we know she can't be hungry. When we tell her she has just eaten she ask "what did I eat" She does not remember eating anything.

  - Sherri

• October 30, 2009 8:53 p.m.

  My father was diagnosed with dementia just recently and was put into a nursing home dementia unit. He is high functioning and when he sees me he asks to be taken home immediately. I am finding it difficult to go to see him, yet I know he depends on me. I feel as though I have abandoned him.

  - No name given

• October 13, 2009 7:49 a.m.

  I help care for my girlfriend's ninety-year old dad on a farm in rural Minnesota. He's had dementia for a few years and does not like the idea of leaving the old farm house and dog to live at a nursing home in town. He grew up drinking milk straight from the cow and is independent as the day is long so trying to get him to mind is not easy. Two things help though: Speaking in a soft tone helps. And, trying to make tasks such as using the toilet or taking a bath sound like fun. Reminding him that he'll feel better after completing the task or associating the task with a pleasant memory sometimes makes both of our lives a little easier. Many thanks to the Mayo Clinic and all the contributors.

  - craig

• October 12, 2009 7:57 a.m.

  Very helpful article on caregiver strategy. Hope you can visit our rural Maine Alzheimer's blog at hazidaze@blogspot.com

  - barb and gordon

• October 11, 2009 10:20 p.m.

  My ex-stepmother had a stroke a few months ago and was placed in a nursing home by my brother. The doctors felt that she would not be able to take care of herself properly after being released from the rehab center. She was able to walk at this point, but had difficulty remembering how to do things. She, of course, did not want to go to a nursing home, but attempts at having her stay with a daughter or have her sister stay with her failed. The nursing home staff says she is verbally abusive, kicks, etc. There have been 2 ocassions when my brother went to see her that she was completely zoned out...slack jaw, drooling, non-responsive. The last time, about 3 weeks, my brother questioned her mental and physical condition to the nursing home staff and has been making random visits. Since the last episode, she has been fairly alert, able to read and answer questions posed by my brother, has known my brother, her other children and grandchildren. It has been said that she suffers from Lewy Bodies Dementia. Does this type of dementia cause the zoned out physical state that my brother found her in?

  - Gail

• October 1, 2009 3:12 p.m.

  Sally - Yes, the costs are horrendous. You need to contact an Elder/Estate Law attorney. The Alz Assn in your state might have some names or your Area Agency on Aging will have the names of a Senior Advocate in your area, referral names, etc. While you still have resources, you might be able to protect some of your assets or legitimately spend down some of them before you need to place your husband into a care center, if it gets to that point and you decide that you can no longer caretake him at home. Medical Assistance rules vary from state to state, my state has a 7 year look back period. Don't delay -preparation is essential. May God Bless You and your family during this journey. Remember to smile, laugh, breathe deeply, enjoy the fall colors, hug another and Celebrate TODAY!

  - MK

• September 30, 2009 6:25 p.m.

  Of the many comments I have read, I have not seen a reference to the cost of placing one's loved on in a nursing home or other care facility. My inquiries have only yeilded a horrendous expense of $6 to $7,000 a month which is absolutely out of all possible consideration. Having home help is slowly eating away all our resources even now and my husband is only in the earlier stages of Alzheimer (diagnosed 2 years ago though I knew things were not right 3 years ago.) What do others do? Is there any agency that offers help? Does Medicare help a little in some ways? We live in Maryland, are there other States that offer help? If so, can one move to those places to qualify for their assistance? Where do I turn for advice and help. Thank you. Sally

  - Sally

• September 30, 2009 12:25 p.m.

  12 Steps for Caregivers continued ~ 8) I need to remember that my relative is not being 'difficult' on purpose rather that his/her behavior and emotions are distorted by illness 9) I need to focus & enjoy what my relative can still do rather than constantly lament over what is gone 10) I need to increasingly depend upon other relationships for love and support 11) I need to frequently remind myself that I am doing the best I can at this very moment 12) I need to draw upon the Higher Power which I believe is available to me I send this out with love & hope that it may give you comfort and knowledge. Knowledge that others have walked this life's journey in similar shoes & are survivors, unique and 'real'. May the Higher Power bless you in all aspects of your life journey. Smile, Laugh, Hug Another, Breathe Deeply & Celebrate TODAY!...it is a gift, that is why we call it the present.

  - Mary K

• September 30, 2009 11:43 a.m.

  My husband in the fall of 2004, at age 52, was diagnosed with frontotemporal lobar degeneration. My then 14 year old son and myself decided to caretake him at home until the spring of 2008 when we no longer could manage his increasing erratic behaviors and my son was preparing to leave for postsecondary school. Wayne was placed into a wonderful memory care unit and on Monday was placed on hospice. When dealing with the disease's progression & the effects it had on my husband; as caretakers, a gazillion times we said to each other with humor, "It's the disease!". We also had posted around our home the following 12 Steps For Caregivers: 1) Although I cannot control the disease process, I need to remember I can control many aspects of how it affects me & my relatives 2) I need to take care of myself so that I can continue doing the things that are the most important 3) I need to simplify my lifestyle so that my time & energy are available for things that are really important to me 4) I need to cultivate the gift of allowing others to help me, because caring for my relative is too big a job to be done by one person 5) I need to take it One Day At A Time rather than worry about what may or may not happen in the future 6) I need to structure my day because a consistent schedule makes life easier for me and my relative 7) I need to have a sense of humor because laughter helps make life easier for me & my relative ~ to be continued

  - Mary K

• September 30, 2009 9:37 a.m.

  As an exercise/movement therapist I cannot stress enough how valuable simple, thoughtful exercise/movement sessions are to an Alzheimer patient. Non verbal communication is still available to these patients; sometimes it is the only way to reach them. I find that gentle, sometimes passive movement (i.e. you move the patient's limbs for them, encouraging them to extend their range of motion---but only once you have gained their trust and can see that they are relaxed)will bring astonishing results. My client's responsiveness, state of mind, and ability to ambulate all improve after every session. To be honest, there are some days when she simply can't be motivated, but those days are few and far between...and she's 88! Her dr's are amazed. From what I understand, this hasn't yet been studied adequately. The mindbody connection is full of potential benefits for these people, and their care-givers.

  - Cristine

• September 29, 2009 4:08 p.m.

  I really enjoy the articles on this blog. After caring for my great grandfather for over a year I built the site AlzMall.com. I am really looking for those who are passionate about Alzheimer's care to contribute articles, stories, or just general information to my site.

  - Jerry

• September 29, 2009 3:24 p.m.

  My aunt is 85 and has advanced alzheimers. She has stopped bathing and cleaning her teeth. If I insist she will clean her teeth, but it makes her very angry if I do. She thinks I am very rude to raise the matter with her. "I've been cleaning my teeth twice a day since I was 3 years old" is her standard response. Does anyone have any tips on how to tackle this?

  - frances

• September 21, 2009 9:59 a.m.

  I took my mom to a doctor's office for a follow up visit a couple months ago and she became agitated, angry, and stressed. She didn't recover from that and it seemed to make her medications ineffective. The health provider wants my mother to go to a doctor's office again but I can't let her go through that again when the ramifications were felt for months later. Has anyone else experienced this? Any thoughts?

  - Janice

• September 15, 2009 8:15 a.m.

  my mom has alzheimer's . she will not come out of her room but to use the bathroom or go shopping. i am shopped out. she will only eat supper with us. she will keep food in her room after i tell her no.she also has high blood pressure ,dibitic . she always says she let a wet gas and she is changing her clothes. she will not let me was out her undies. i can't figure out why she likes to watch program's on people being killed and children being rapped and beaten. she tells my kids about this. i told her we do not want to hear about it. she gets mad and storms off. i know she has told my 12 year old daughter since she was 3. i love my mom . i try very hard to keep her happy. but living in the dark and not wanting to be around people is not good sign. everytime a dr. told her she had this she would change dr's. i made her listen and move in when she was getting into cars with people she didn't know. she also does black outs with throwing up. the dr. has figured it all the way out on why she does this. mom will not let me help her with her meds. we think she was taking to many blood pressure pills. or if she got woke up when she lived on her own. i confessed her and she took the wrong meds at the wrong times. mom has been with us since feb. i didn't give her a choice. she has had this for five year.please tell me more about the stages. thank you for listening.

  - SANDIE

• September 11, 2009 3:33 p.m.

  Chris - Have you checked the "resources" tab at the top of this page? There are a bunch of organizations listed there that can give you advice and support in dealing with your mom's alzheimer's. Apart from that, you should treat her like your mom -- somebody you love and respect. You won't get everything right all the time; we all get tired, impatient, or just make mistakes. Just do your best. Good luck.

  - Agatha

• September 11, 2009 2:47 a.m.

  My Mum has developed Alzeihmers. She's 88 and forgets things easily. How do I treat her?

  - CHRIS

• August 25, 2009 3:28 p.m.

  Dear Jackie - please get in touch with his doctor again and explain exactly what's going on. If he refuses to come see his patient (your granddad), then find another doctor. If he is experiencing hallucinations (the puppy) and delusions, he may well have a serious disorder. You might also get in touch with one of the organizations dedicated to supporting people with dementia and their caregivers (the lewy body dementia association, the alzheimers association, there are others as well). Does the Red Cross or other agency organize respite care in your area? Is there support available through the church? You might want to check the library, too (oddly enough, a lot of libraries perform a sort of clearinghouse function for the community and they may know about a program that can help you). Once you can get your granddad's problem diagnosed, then there should be more support available to all of you. Good luck.

  - Agatha

• August 21, 2009 1:04 a.m.

  someone to help explain..we moved to my parents house, where my grandparents also reside (4 generations out here). my gpa started having halucinations a year ago about a puppy who lived n the xmas cactus, and we couldn't see it because we scared it and it hid when we came over. Now, he's nice to me, my 9 y/o daughter, my mother and that's it. He's nasty mean (verbally) to my dad, husband and gma... he's having many more bad days than good anymore. We contacted his doctor who we asked to come in and talk with as to what we could do etc, he wouldnt have anything to do with us without my gpa's ok which will never happen. We need HELP!! someone to give us an idea of how to cope with him, he's 86 and still drives.. i been buying him ensure as he's now not letting gma cook for him when he's mad at her he drives all the way in town to Mc D's for a burger. he has lost a bit of weight, he thinks we do things to "show him up" so to speak, that there's always something behind what's said... that's never been him until the last 6 months. he's thinking things are happening that are not, my husband can't even say hi to my gma without him getting jealous, my father can't take my gma to the store without him getting jealous.. what can i do?? thankfully i have a loving understanding husband and a terrific father which is his(my gpas) actual son..but gpa says such hurtful things and when i see my 6' 4" 325lb dad cry it breaks my heart. can someone help and direct me where to g

  - Jackie

• August 12, 2009 2:09 p.m.

  My heart goes out to all of you. Bev - I don't think anyone can tell you exactly what to do in your situation, but maybe there is someone in your life who does care about how you feel about things? It is exhausting to be the primary caregiver, and you need a respite now and then. I hope someone will listen to you and give you the rest you need once in a while. Billie - It must be difficult not to feel uncertain or even frightened by your memory loss. I hope you will feel supported and safe no matter what the future brings. We all need to remember to enjoy the good days while we still have them. And Jim -- my heart breaks for you. My father was never very nice to me, either, and now that there's a bona fide excuse for his meanness, I still find it hard not to rise to his remarks. We all have to decide what kind of people we want to be and also how we're going to spend our limited time. I hope I can find a balance between being a nice person (which will involve spending time with my not-very-nice relatives) and being a happy person (which will involve spending time with my own family and friends). Please try not to let the nasty people turn you into one of them! I wish you all well.

  - Agatha

• August 11, 2009 3:41 p.m.

  I've been reading the posts on this website for the first time today. My husband was diagnosed with Lewy body dementia a year ago. The past few months have been very difficult, as his dementia is progressing. Today, I found him pulling out all the grass behind our garage. He said he was pulling out weeds! "Didn't I see the crabgrass and the clover?" I know, by what has been said in a support group for caregivers and what the doctors have said, and from countless things I have read, that I'm supposed to agree with him and not argue. What do I do then? Do I let him continue pulling up all our grass? This is only one of countless things I deal with every day. It is so difficult to put aside all of my feelings so that his will not be hurt, although most of the time I am successful at this. I hope someone will tell me how I deal with such a situation because sometimes I feel I'm going to lose MY mind!

  - Bev