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• Housecall
• Alzheimer's caregiving
• Living with cancer

• November 6, 2009 8:29 a.m.

  I have just made arrangments to move my uncle of 88 years of age with Alz to an assisted living phycility closer to me by 186 miles. I have restled with this for so long. Being the only family member taking on the responcibility of making sure my uncle is taken care of has been a donting undertaking but I wouldnt have it any other way. I always have worried am I doing the right thing on every aspect of his care since he really can not tell me how he feels with out either being very angry and aggitated or being very compliant and just going with the flow. I had promissed him I would keep him in his apt (ind Living) but after having to add 4 nurses aides at least 4 times a day it just isnt enough. Going throught boughts of not eatting, taking his meds,wanting to stay in bed all day, not maintaining daily hygen etc. In addition to doing this for a year and a half with 2 falls, fracturing his hip, breaking a rib and just overall brusing. I needed to do more than I was and I am glad that there are places and organizations to assist familys with this loving care that is needed to make our loved one have the best that they can have during these ever changing times.

  - ruby

• November 5, 2009 3:31 p.m.

  The gals at the facility beauty shop will often take some appts. from the community. It is a good way for your loved one to get to know the place so if respite care or long term placement is necessary; they already know the place and so do the caregiver. I am doing this with my husband who always went to a barber until the barber retired. He likes the gal because she understands and is patient with his memory and word problems. He also is making friends with some of the men and feels helpful to them.

  - Joan

• October 24, 2009 9:22 p.m.

  Well...I have promised to keep Mom here until the end. I don't suppose she knows or cares much anymore. She is still marginally continent but getting out of the bathroom is often a major war. She eats better for me than anyone else, and I just got a lift to pick her up on "bad" days. She is fast losing the ability to stand up making transfers a nightmare. Having been a caregiver for 12 yrs I worry about putting her in a facility. I have worked in those places and know what goes on. My own physical inability to go and visit her regularly would impair my advocacy and likely lead to a swift demise. I am struggling here to keep her home. I know eventually I will have to give in and thanks to those who have written here and made me feel a tad less guilty about it. I just pray I will recover some physically so I can care for her better. Though I have to admit it would be very nice to sleep in one day without feeling guilty about mom person not getting her care soon enough. Let's hope we all die quickly and painlessly. Thanks for listening

  - Vicky

• October 20, 2009 11:10 a.m.

  I am the oldest child and I have been taking care of my 83yr old mother for over two years in my home. She came to live with us when she could no longer drive, cook, take care of daily things and not remembering her meds. So we moved her up here to live with us in north georgia. She has now progressed to the stage where she has tremors, walking is difficult, memory is gone, can't dress or bath herself I thought several mmonths she could go into an assisted living and we were on a waiting list but now she is getting owrse and the doctors are saying that a skilled nursing facility is best. I have most everything in order but would like to know if anyone if familar with the medcaid law in georgia. My mom has a condo in florida and she and my dad (who died in 2003) had the business and the condo put into a Living Trust as to protect these assets. The business was given to my brother and now the condo is still in the trust for me and my sisiter. I would like to know if anyone knows if this Living Trust would still be protected in the state of Georgia? Please reply soon.

  - Sherry

• October 8, 2009 9:45 p.m.

  I married a man 26 yrs. older than me. He is now 86 and has AZ. It is so very hard for me not to feel guilty. Some things he still knows and he makes me feel guilty for being younger. He cannot walk or stand. Can't dress or bathe himself. I have a sitter 5 hrs a day 5 days a wk. It is the only time I have to run the business, shop for necessities, go to bank or postoffice, etc. I do all housekeeping. Cracked two ribs picking him up when he fell. I know I need to take him to the nursing home but feel sooooo guilty about it. He really plays on this, too. What to do? What to do? I am at my whits end but love him so much and know that if he goes I will miss him and feel so alone. This is a terrible disease. I hate it for him and for me. I try to go to support meetings but it is hard to find time to go.....but I know I need it......it helps me help him. Fay

  - Fay

• October 6, 2009 3:47 p.m.

  My was diagnosed in 2007 with Alzheimer's Disease.She is 84 & has always been independent & has always taken care of herself, my dad (before he died), her kids. grandkids, etc. Now, without the help of my siblings, I am caring for mom by myself. She is moving from the mild to moderate stage. She lives alone; gets up mornings & makes her bed, makes her instant coffee; fixes herself cereal, works word search puzzles' goes to church with friends, etc. However, she is becoming severely paranoid. She has always been paranoid, but the disease has accentuated it. She imagines a stereo & cedar chest are missing from her driveway. No matter how many times we tell her there never were such things in the driveway, she continues to call & say the thieves took them & she calls the police. The police now speak to me on a first name basis. Accept for the paranoia, mom does well in her home. BUT, she is killing me & the neighbors with her constant phone calls about the things stolen. I have had to take time off from my job just to be available for her. I have meals delivered to her house; I buy her groceries; I buy her clothing; I pick up her meds (her neighbor gives her medicine); I take her to her doctor appointments; I have tried to get her into clinical trials. I do everything for her even though she is capable of living at home. Trying to get funding to get her into an adult day care center. I don't have the money for assisted living or nursing homes. There i

  - Chere

• October 5, 2009 2:50 p.m.

  Trying to live up to the traditional Italian definition of "bella famiglia" hasn't been easy for my family's situation. My father-in-law of 83 was kept at home for 2 and a half years and watched over by his aging wife, children and the "nuora' (me). Incontinence, inability to eat and being lifted by a type of manual crane has finally taken its toll on all of us. Lack of sleep, eating improperly while trying to maintain jobs has just about destroyed this nice Italian family...We've all been sick and even lost weight during this last year while Nonno Mario keeps plugging on...Today was his fourth week in a "casa serena"(nursing home) and for him everything is the same...We should be relieved and looking forward to getting back to a normal routine but it's difficult when the neighbors 'tsk-tsk' over the fact that we weren't up to the task of caring for a loved one in the house(up to 75% of Italian families do this). For myself, I can't wait to visit him tomorrow...just to see if there is a glint of recognition in his eyes and maybe if I'm lucky I'll capture one of his toothless smiles.I'm on a major guilt trip in spite of all the research we've done on his illness..It's a disease that I think I'll never really come to terms with.For this reason, I'll be volunteering time to help out in the local daycare for the 'anziani' now that I've been graciously 'let go' from my teaching job. It's time for me to learn more even at the ripe old age of 52.

  - marisa

• September 22, 2009 11:58 a.m.

  My 85 year old father is caring for my 89 year old stepmother at home. Her dementia or Alzheimer's has greatly progressed this year. This summer he finally consented to have a caregiver two afternoons a week. His health is suffering, since he insists on doing everything himself--including all the yard work! She really needs more care, because she has fallen several times, and will leave or try to get out of the house whenever she sees a chance. My father is convinced she wouldn't survive in a care facility. As an only child, I'm caught in a bad situation. She is not my mother and has no children, only nieces and nephews. One of her nieces and I have teamed up and have become close friends, too. I'm very concerned about my father's physical health and he is beginning to make decisions that aren't well thought out. He's very strong minded and my input doesn't have too much influence. Not only am I his child, but I am a woman. Unfortunately, I see nothing changing until something disasterous happens. I have so much empathy for other families in this position. This disease sucks the life out of family members too.

  - Jenny

• August 19, 2009 12:03 p.m.

  In July I put my husband of 24 years in a memory unit, then I went off on a much needed vacation. When I returned I thought I would be bringing him back home, but his doctor and the unit felt he needed more care than I could give him. (he's diabetic as well as 3rd state AZ) I have watched him deterioate fro the past ten years. I know my health has suffered as well, but the guilt and the questioning is so overwhelming sometimes. Other times I feel amazingly free, alone but not really lonely. Able to eat or sleep when I want is an amazing gift. I don't visit him much yet, it only upsets him and when he sees me he kicks and screams that he wants to come home. I hope I'm doing the right thing.

  - anna

• August 15, 2009 2:44 a.m.

  My husband and I have moved his mother in a year and a half ago. We are now researching nursing homes close to our house so one of us can stop by on a daily basis.(We work opposite shifts). Just changed our todddlers crappy diaper and hers. Shes 82 he is almost 3. Haven't been able to leave overnight since she moved in. There is guilt and reality. She needs more than we can give her. We serve her every meal in her bedroom because she won't come and dine with family. She is very frail and needs help with everything from dressing to showering. A place for mom is a good non profit organization if anybody needs help to place a loved one. There are insurance issues and asset issues that need to be handled if you are not able to help with the monthly expense of a home.Research them and show up unexpected before you pick one out. We still have her at our house until we are 110% comfortable with our decision. Good luck to all.

  - Kerry

• August 7, 2009 10:37 p.m.

  I see the care home from both aspects as a family member and a professional caregiver. I give advice to all - do not become the sunday visitor. Stop in on different days and hours so that you get to see what is really going on with mom/dad. You are still their advocate- don't be afraid to ask questions and demand changes. Even the best places are not perfect.

  - No name given

• August 6, 2009 3:54 p.m.

  This is nicely said, and one of the best articles i've read as a nurse and caretaker of a parent who has Alzheimer's Disease, whom I'm battling siblings on reasons why we need to move our loved one. Not because we don't love them any less, we love them dearly they just need more care than can be provided at home. Thank You again for this article.

  - RN

• August 5, 2009 6:11 p.m.

  a year ago went through everything in your article you are right on... your notes would have relieved so much anxiety for me, yet, we did get to the same place thank you oh, one addition, be prepared to cry a lot until the transition is made.

  - al

• August 3, 2009 7:52 p.m.

  Besides having dementia, my mom has diabetes. After our dad died, my brother lived with her to test her blood sugar levels and make sure she got her insulin and meals. So he could continue to work, we hired home helpers to come in during the day. The trouble was, mom would lock them out of the house or try to hit them. She also started fighting my brother about taking her insulin. In December she came down with the flu and could not keep any food down and had to be hospitalized. As she recovered though, her doctor suggested she be placed in a skilled care facility. She hated it and us for taking her there, but we now realize that she was beyond our control. Since December she has been in three different nursing homes. The first got rid of their Alzheimer's unit, and the second sent her to a mental hospital to evaluate her meds because our mom, who was always a sweet and gentle person, tried to strangle a fellow patient. She is now in a very "homey" place with staff that really deals well with their dementia patients. It breaks my heart to see her declining in this place, but I know in my heart that it is the best care for her...and her kids.

  - Alex

• July 8, 2009 1:58 p.m.

  My parents retired overseas almost thirty years ago, to a place that has no known services for the care of dementia patients. We don't even have a diagnosis. It has been nearly impossible for us give them the care they now desperately need. Both are in their 80s, and the laws and standards are so well, backward, our struggle is to get them home to the US and into a facility as soon as we can (we've been trying for eight months now), and dealing with things like indifference, lost passports, lack of technology, and doctors who don't see the urgency of the situation. We earnestly hope that when we finally get them to the airport, they'll be physically able to travel. And as for walkabout, our worry is driveabout. There is no recollection of the revoked license, strenuous insistence on being just fine, and a whole lot of hostility aimed at the very ones who are losing sleep over all of it -- us.

  - Name Withheld

• June 23, 2009 8:44 a.m.

  What do you do when the main caregiver sees their sole identity and purpose as the spouse of that same Alzhiemers sufferer? There is full-time help. They both need it. He should have been in an appropriate facility 2 years ago but she just can't give him up. This is the second time he has gone "walkabout". The first time was last year and he came back by himself 2 hours later. This last one he went missing for 12 hours, it was 90 degrees most of the day and the diligent police found him and brought him home. These people are not my parents but tend to rely on me heavily as a part of their support system. How do I shake her into making the decision and not being persuaded otherwise? How long can a person selfishly rely on the good will of many others? When does the system step in and take over? In their case it has been said that if he moves to a facility it is a death sentence for them both. Is it?

  - Sally

• June 11, 2009 1:05 p.m.

  My father has Lewy Bodies dimentia and was diagnosed about 7 years ago. He is now on the finall leg of his journey in this life and we are staying close to support him for as long as possible. My mother made a valiant attempt to keep him at home for as long as possible and finally during a regular visit to his doctor, he was admitted to the hospital for respite care, to help my mother care for herself, and he has not and will not come out again. The tradgedy of this is the conversation about how to care for him in the future had already turned to a care home. Regretably his condition deteriorated so quickly that the decision was removed from my mother and the family without any choice in the matter. It is not easy seeing him in a facility now, but his level of care and security is far better now that it would be had he stayed at home. Have an open discussion with your partner or parent before it is too late about what inevitably will happen and let them know that even if they can't stay home anymore, you will continue to be their care-taker. Do this while they are still able to understand the situation and get their approval to do what is best for them and yourself. This will go a very long way in eliminating the feelings of guilt and sense of abandoning aloved one. There is no happy ending to this saga, but it can be a comfortable and safe experience for everyone.

  - D C Long

• June 3, 2009 9:18 p.m.

  My cousin, who lives alone had gone through most of her life savings, buying new cars, jewellery from a mall kiosk etc. with huge visa bills before her POA was put into effect. With much work a mortgage has been obtained to keep her in her house and automatic bill paying and a weekly allowance to her for extras. We have a PSW 3 times weekly for dinner help and medicine compliance, two day programs at the Senior Centre with van drives to and fro. She constantly tells her friends she has no money, no food, her family have taken everything away and insists there is nothing wrong with her. She is very convincing and they believe her. Her licence was taken away by the MOT but she still insists she is getting another car. Has bought 2 bicycles promising to pay folks back, which she cannot ride because of poor balance, due inpart to 2 hip replacements.She has had a 2nd opinion. We are told by CCAC that we must wait for a disaster to happen before she is put in a nursing home which we feel she is not ready for now. We feel a retirement home (which she refuses to consider) would be ideal but she could walk out. She will not accept any more home help and is constantly threatening to fire the PSW help we have now. Today we discovered a "friend" had advised the government to send her old age cheques to her house rather than the bank so she would have some money. How do we protect her and keep her safe? Our goal is to have her enjoy and make the most of the days she has le

  - Linda

• June 1, 2009 8:01 p.m.

  After reading your article, I cant seem to make it fit! My husband was told he was not care facility ready because of his constant care due to not wanting to stay in his bed or chair and his sleeplessness. I just dont see where his situation is so different than millions of others with the disease but I was told I would have to have a sitter in the nursing home because they dont have usfficent staff. Currently I am paying sitters around the clock but have no idea what I will do if the money plays out before he does!

  - MeMe

• May 13, 2009 5:44 p.m.

  My husband of 45 years-almost 2/3 of my life has been with him-started his downhill trip with dementia in March of 2008. Earlier he became a type 2 diabetic, then after a colonoscopy in 2005, lost the ability to urinate the usual way & eventually had a suprpubic tube inserted + bags for day & evening. In 2007, became legally blind from macular degeneration & had to give up his license. In 2008, he had a minor stroke, & dementia descende on him. On April 20 this year, I was unable to wake him for supper, & called 911. After two hospital stays & two rehab stays, he is insecond rehab stay & getting physical & occupational therapy, etc. It is heartwrenching to see the change in him. I run out for all errands & try to get to see him every day. The staff is taking good care of him, but I am torn up every time I see him. I come home, and once inside with the door closed, & break down , every day. I have been told not to hold it back, but to let it all out. The apartment is so empty without him & every time I look at something he has made or his paintings, I go to pieces all over again. I have GI problems over this every day. Imaganing life without him is an awful thought. I have lost parents, both brothers, and the grandmother I loved & spent most of first 11 years of my life. This one will be the worst loss. I feel devastated. Please-pray for me.

  - Emily

• May 13, 2009 1:40 p.m.

  I don't know what it is like in the US, but this time of life for elders must be terrifying. Loss of home, maybe auto, furniture, ability to make many decisions. We never thought so many would live so long with many attendant health problems. This is a lesson for many of us younger caregivers. We need to mind our own health, exercise & eat well, keep our minds alert. In Canada a good many seniors have pensions that cover their expenses in Assisted Living facilities and Personal Care Homes. Those who don't have adequate pensions can qualify for government subsidies. Health care and drugs are also covered by government. I am amazed at the care provided. So - caregivers - take care of yourselves. We are next up at bat!

  - Liz, (Canada)

• May 12, 2009 3:59 p.m.

  My husband of 61+ years has been in a care center for less than one month. It has been a roller coaster experience for me. The sundowning became so severe that he was uncontrollable in the Alzheimer unit. He was sent out of town as a person seriously mentally impaired, to be treated and his meds evaluated as to how he reacts to them. As it turned out, he had a mild pneumonia, and early signs of congestive heart failure so that is what treatment was done at the hospital out of town and then he was sent back to the original care center. There was no med evaluation done. He is no longer in the Alzheimer unit. Hospice has accepted him and will tend to him at the care center. I am still wondering if some of the meds used to calm him were not the best choice for him. I am an emotional basket case to say the least, with all the guilt feelings, sadness, and wondering if I should have kept him at home. I love him dearly, even though he is not the same now. I feel he is suffering the loss of his home and the farm life. There were times when he was still at home that he did not know who I was and that was painful for me. It is a vicious disease. I hope there is a cure for the future generations.

  - Bonnie

• May 10, 2009 9:47 p.m.

  My Dad was diagnosed several years ago (maybe 3-4?) with Alzheimers. He will be 87 this summer, and has another number of health going as well (Heart disease, now diabetes, etc.). His little brother has been in a care facility for 4-5 years with Alzheimers as well, and while it's easy to speak from the outside, he was probably kept at home a little longer than he should have been. While we have been fortunate that my Dad's wife is still willing and so far able to care for him living at home, we all agree that those days are very numbered based upon his steep decline in these past 6 months of so. Dad does go to an adult senior facility specializing in this disease about 3 days a week, not only for his own stimulation, but to give his wife a well-deserved breather as well. After spending the last 3 days full time with him in the hospital for heart related issues, it makes me SOOOO appreciative and empathetic with his wife who deals with this disease day in and day out, and has a heart of gold. Take care of the Caregiver as well as the patient. The Caregiver may rarely speak up and recognize the stress they are putting themselves under, regardless of the best of intentions. Even though it may be a struggle initially, moving towards the best interest of the patient I believe at this point is the right decision. Moving Dad to a FT facility will be hard when the time comes soon, but it's not going to be an option for anyone (him included) to keep him home for long now.

  - Patty

• May 5, 2009 6:49 p.m.

  Today is the first day of my journey. I was just asked by my Dad to please look into becoming my Mom's caregiver. He has cancer and he wants to be prepared. Where do I start ? They have insurance that pays a caregiver. I will be giving up work to do this.

  - Annie Z.

• April 29, 2009 7:37 p.m.

  Does anyone know where you can download a sample Letter of Medical Necessity that relates to the necessity for placing your loved one in a facility? If you have one and wish to email it to me, it would be greatly appreciated!!! djboca@gmail.com Thank you!!!

  - David Rubin