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    Angela Lunde

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  • Alzheimer's blog

  • June 28, 2011

    Tips for caregivers who need to take a break

    By Angela Lunde

48 comments posted

Alzheimer's Caregiving

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Your comments over the past couple of weeks have been filled with useful and practical strategies for managing day to day caregiving. More importantly, many of your ideas and strategies arise from the ingenious creativity that only caregivers can offer.

For example, Pat bought an executive desk chair with wheels for her husband (she says it makes him look like the former bank executive that he was) and now she can easily wheel him into the bedroom or wherever needed.

Bob wrote that he requests a booth rather than a table when eating in a restaurant so he doesn't have to worry about her standing up, potentially falling, or wandering off.

Despite the useful caregiving strategies many of you share, clearly the stress of caregiving is the most consistent theme in your recent comments. In my experience, one of the most significant ways caregivers cope is by taking regular breaks. Most of you would agree that respite care (hired or volunteer help) is a good idea and is important for caregiver survival. Yet, for numerous reasons, there's often a great deal of reluctance around accepting help.

I understand that bringing a stranger into the home can seem like a big gamble. We may fear that no one else can do it like we can, or that they may not be sensitive to our loved one's needs or cares.

Donna shared an all too common concern that her husband with dementia doesn't want anyone else involved in his care. Some of you wrote that your person with dementia would feel miserable, anxious, angry or uncomfortable with someone new. And most caregivers would put guilt at the top of the list as reasons not to consider respite care services.

In addition, obtaining in-home (or an adult day) respite services competes with denial. Caregivers often feel that their person with dementia isn't at the point where they need someone watching them. Using respite services requires a level of acceptance about the progressive nature of the disease. The decision to use respite care can be emotionally rough.

And, of course, there can be a financial barrier.

So, while I do have a sense of what keeps you from using respite, let me offer a few strategies to consider.

  • Believe that earlier is better — I encourage each of you to establish respite care early — well before it becomes necessary. This way the risks are low if the person doesn't work out — you can try someone else. In the early stages of a dementia, the respite caregiver is more of a companion and there's a greater opportunity for the two to create a meaningful connection; it feels less like a "sitter" to the person with dementia. As the disease progresses, the respite caregiver begins a subtle transition into a more direct caregiving role.
  • Don't ask for permission from your person with dementia. You'll never get it. A person with dementia generally lacks the ability to understand their own needs and limitations, much less yours. This is a decision only you can, and should make. Be assured you are making the best decision on behalf of the person with dementia.

  • Frame the arrival of a respite caregiver in a way that makes sense to the person with dementia. If you say, "A caregiver will be coming to stay with you when I leave," you'll likely be faced with a great deal of resistance. Nobody wants to feel like they need a babysitter or that they're giving up personal control. In addition, persons with Alzheimer's feel a great deal of anxiety around the anticipation of new people, new situations or a change in routine.

    • Instead, consider saying something like, "I really need some help so Martha is coming to spend a little time at the house." Or, "There's a college student who really wants to hear about your hobby, or career as a __________ (fill in the blank); I'm so excited to have him meet you."

    Some caregivers have said it's best not to say anything in advance and when the new caregiver arrives, they simply invite them in, have lunch, get acquainted, and then after a bit, casually mention you need to run an errand. Get the idea?

  • Accept guilt as normal and ever present.  One reason, among many, for guilt is that we set unreasonably high standards for ourselves. Yet it's not practical to think that we need to eliminate all feelings of guilt. We simply need to accept that guilt comes with loving.
  • Look for a combination of fee-based services and volunteer (donated) services to help manage the cost. Lela Know Shanks in her book, "Your Name is Hughes Hannibal Shanks", wrote this: "If I made cost my first consideration, I never would have hired a respite caregiver at all. And I have often had to use my savings to pay for such relief. But that is what savings are for — emergencies; and when the primary caregiver is stressed out it is an emergency."

Call the Alzheimer's Association toll free Helpline to locate respite care in your area at 1-800-272-3900.

"We are entitled to decide we can longer do it alone."

- Linda's blog comment on June 27.

48 comments posted

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  • September 22, 2012 4:09 a.m.

    WOW! four years ago i had to quit my job, move out of my house and move in with my parents to care for my mother who has Alzheimers. The job and moving to care for my mother I could except. But it is all the other things that im exspected to do that are killing me. We have 5 dogs 6 cats and a parrott. I care for daily. feeding , watering, triming and bathing. I prepare 3 meals a day, includes washing ,drying a dishes away. trash daily. we live in a 4 bedroom house all hardwood floors which i clean. I clean the house daily and I do the laundry. I maintain the swimming pool. I wash 2 trucks 1x week. i trim and keep up 20 sega palms. i weed front and back planters. Thank god we have a man that mows. I do all the shopping, meedical appointments. make out all the bills and or other banking needs. And the safety and caring for my mother. This caring also includes my dadS needs. who is retired and builds try 5 chevys as a hobby which keeps him gone from the house most of the day. And when he is home on sunday he is in his garage. He does water the grass in the evening 2 times a week. I do everything , My brother or his wife can't help because they both work. (not everyday)! my dad does take my mom to dinner 1 x a week and my neice cooks dinner 1 x a week but when we go to dinner I end up doing the dishes then playing with my nephew., who also lives behind us and asked to watch him too often. or he just wants to come and swim. HOW DO i GET THESE PEOPLE TO UNDERSTAND I NEED HELP.

    - Sheila

  • April 20, 2012 10:37 a.m.

    Oh my..you all live in my house!!!! My Mom stays with me, has for the past 10 years.....the dementia started 2 yrs ago, we are still in the process of getting an actual diagnoises....but I KNOW. I feel so bad when I lose my patience with Mom. My siblings are both 1500 niles away and it is ALL on me. When my dad passed away my Mom asked if she could come stay with me in Florida ( they were always going to retire here) Dad died suddenly and Mom came with me.. We were best friends......now I hardly know her. I asked My sister if I could send my Mom up to stay with her for a couple of weeks this summer so I could have a break ( I work full time ) She advise me this is what I signed up when I told Mom she could come stay with me, its MY problem!!! REALLY???? Who knew this awful illness would take our Mom from us!!! Sorry Just needed to vent!!! Reading her has been helpful, I have laughed and cryed a lot today!!

    - Dottie

  • March 23, 2012 10:57 a.m.

    I amalso the care giver for my Mom who is 92. She has lived with us for 12 years and it seems that my husband is using her as his target of aggression, etc. Is this natural?

    - Gloria

  • September 16, 2011 10:14 a.m.

    I could not afford to pay for any help for my husband. Then God brought me this little Menonite lady. when I talked to her she said she didn't just want to sit did I have housecleaning to do. I told my husband that it was too hard on him sitting at the store while I did monthly shopping. It is too hard to shop once a week. I said she will be here if you need anything but will be helping me by cleaning the house. He really likes her and best of all she charges me 5.00 an hr up to 5 hrs and that is it . I am usually not gone that long. But it wonderful to go shopping and remembet things instead of rushing and worrying. I never thought I would see the day when I would be happy to go grocery shopping along. It's the little thing that counts. God Bless all caregivers

    - Charreene

  • September 1, 2011 6:06 p.m.

    My Mom has Alzheimers, she is 81. My dad passed away alomost 2 years ago. We now have a full time caregiver during the week for my Mom, but she is alone in her home at night. I have 2 brothers and my sister (who was the oldest, passed away 4 years ago). My older brother lives on the other side of the mountain and only comes to help or visit Mom about twice a year, when it is convienent for him. My younger brother just had back sugery and is just at point of helping again, but is finding excuses why he can't. i am at wit's end and worn out with the weekend care giving (I work full time also). I purchased a horse for my Mom to ride (she rode her horse to school as a kid) so her and I have been riding in the mountains 7 times this summer and hope to go some more. She doesn't always remember the ride, but while we are out and riding she loves it. I was able to take her into where we took my sister's ashes, (she was able to go when we first took them because of my Dad's illness). She might not remember it, but the memories it leaves with me are priceless, and something my brothers will never have. I wouldn't change this summer for anything, it's not always easy, but the memories we can make with are love ones now are worth every minute. I'm not sure I could do a good job it it wasn't for the support of my husband and Mom's caregive- Sandy, they are my support system. God bless you all and find humor in all that you do, laugher is the best medicine.

    - CINDY

  • August 8, 2011 1:44 a.m.

    Hello everyone as I was reading your post I just would like to say to all of you that you are all so great and I know and pray that all your efforts be much blessed for I know God see's the heart of the giver and what you all give is a lot of love. That is the greatest gift the gift of love and commitment.I just got back from visiting my family an hour away and now that my mother 84 who came to me 1 year and 2 months ago. I can say that I thank the Lord that I finally feel supported by my siblings I opened myself up to them and told them how moody our mother is getting and how annoyed she is with my son and that I am really torn I love my mom but my child is my child and I feel over protective over both,sounds silly but it's my issue but I know that although it's hard at times I love them both and whoever said we are hares hit it perfectly I totally agree to that statement. This is my prayer Lord Jesus help me today and everyday to love and take care of my mom help her mind slow this disease down Lord,give me wisdom to remove myself when I have had enough and keep us in your will always In Jesus name amen and amen.May u all be blessed that every offering you make is an offering of Love for your loved one and God loves that!!!for God is LOve.Rest in the Lord and in his word for it gives direction and peace to the soul night all!!!

    - sylvia

  • July 31, 2011 6:04 a.m.

    my husband of 27 years is in the latter 5th stage of Alzheimers. Everyday there is a change. This week has been extremely hard because he has been talking and crying over loved ones that have been gone a long time. Then yesterday morning he started talking about how useless he is and that he would be better off dead. Oh how my heart is breaking, because I tell him that he is my life and I would be lost without him. The truth of the matter is: He is there in Body but I lost him along time ago. I am 58 yrs, old and this is the first time that I have been this close to Alzheimers.This disease is so mean and if there is anyone out there that thinks it is a peice of Cake, They should have to spend just 24 to 36 hours with them and they would change their mind real quick. I feel like all my friends have deserted me, guess they just can't live with the excess baggage that comes with being my friend.A real friend would stand by you so I guess they aren't true friends after all. But I feel like I am carrying this load all alone.Thanks for letting me blow off some steam I have found that writing your frustrations down is somewhat helpful. To those out there dealing with the same thing I am dealing with; my prayers go out for you, because when all is said and done; The Good Lord is all we have** He is a friend that will never turn his back on you or desert you.

    - vicki

  • July 19, 2011 9:59 a.m.

    My husband was diagnosed in 2002. He now has severe ALZ. Recently he was in the hospital for a colon infection. The hospital stay and illness greatly sent him on a down hill spiral. He is now much worse. It has been very hard to see his ALZ. get so much worse in such a short time span of 2 weeks. I have help now from hospice that I didn't have before. They have been a blessing. I just wanted you to know how detrimental an illness can be to Alz.

    - Phyllis

  • July 18, 2011 11:47 a.m.

    This is my first blog regarding my Mother's care. I brought her to my home when my older informed me there was no more money to maintain her in the upscale facility where she had been. As always there is a story behind that one. Anyway I brought her to my home because I was unemployed and attempting to maintain a catering business that I had started as a part time situation. I prepare dinners on a steady basic two nights a week for professionals who do not have the time to prepare meals for their families and then special occasions as they arise. (background) There have been many family issues regarding money and currently my brother which placed all the assets in his name after my father passed away is now on trial for bribery and conspiracy go figure. When my dad was alive about two years prior to his passing away he told me "your mother is losing her mind." Not have the most calm childhood, listening to Sat night brawls my mom packing up and leaving the three children me taking care of my younger brother I answered him by saying Dad you guys are old cant you just get along and he repeated that mom was losing her mind and she was. After his protection was gone it was more and more evident, she accused my brother of stealing her money and drove 150 miles round trip every weekend to set up meds and handle meals for her before we decided she could no longer live alone (she lived across the street from my older brother and his wife). Looks like I am almost th

    - Carol

  • July 15, 2011 10:07 a.m.

    My wife was inflicted with Alzheimers 9 years ago and is now in the final stage. Since she broke her hip over 3 years she hasn't been able to walk or do anything else. I had to quit work to care her full time and after 40 months I decided I neede a break so I put her in respite for 2 days and spent the whole time worrying about her. Although I did get a break from the daily routine, it was rather stressful. Hospice has been a big help. Even though this can get exhausting, I wouldn't have it any other way. My wife is 83 and I'm 65. We've been married for 36 years.

    - Bruce

  • July 10, 2011 9:44 a.m.

    Wow that is indeed an amazing site, you are doing a great job maintaining it. Thanks A lot!

    - terry

  • July 9, 2011 1:42 p.m.

    Rose this is easier said then done, you have nothing to feel guilty about and now must wait for your Mom's final call home/heaven. Your Mom gave you a beautiful name and by being her Caregiver you have proven she's given you a name that is beautiful on the inside as the outside. You are now at the end of the path that we are all traveling to, our final good-bye.....as I have said to many a friend who is losing a parent to Alz or not. End each visit or when they go to sleep telling your parent/Mom how much you love them and then leave the rest to the power/nature/God that deems all things. The cruelist disease leaves our hearts broken, we lose them first in mind then in body. My prayers are with your Rose

    - No name given

  • July 9, 2011 12:56 p.m.

    Rose: My heart goes out to you. Please don't feel guilty about your mom. She is not in any pain and doesn't feel hunger. This is nature taking over. Your job is over and God is doing His now.

    - shirley

  • July 9, 2011 7:40 a.m.

    My Mom is in her final days of this disease. The guilt is so hard to take. Not being able to feed her, by any means possible, ie feeding tubes,etc breaks my heart. Watching Mom waste away, starving and all the experts saying it is okay is truly hard to take.

    - Rose

  • July 7, 2011 4:23 p.m.

    Terry-- Your words are so true. If we don't take care of ourselves, we can't hope to do a good job taking care of our loved ones. They are like small children and can sense when we are frustrated and besides ourselves.

    - shirley

  • July 7, 2011 4:19 p.m.

    Betty: I want to correct the website address I gave you. It is www.thealzheimerspouse.com.

    - shirley

  • July 7, 2011 8:30 a.m.

    Sometimes in this race called life you have to ask the question I am the tortoise or the hare......I think Alz caregivers are Tortoise's. We have to move slowly threw the course use that hard shell to deflect the pain that comes our way and continue to move slowly and with care. If we try with all our might to take care of ourselves in our 36 hour day we can then answer those repetative questions, do double duty on everything and we can understand the statement "I am exhausted" . BUT we must find, we must fight to care for ourselves. Our darling loved ones can't understand, they can't they just can't. But that doesn't mean there will be done. RESPITE care is a must !! We all have to work to find it, it's not going to come because we just want it. And none of us need permission or validation from anyone that we need it. When guilt comes your way pull into the shell and let it bounce off. When my husband gets in one of those states (you all know what I mean) I remember disease not husband. And Shirley's right Alz spouse another good site

    - Terry C

  • July 6, 2011 10:15 p.m.

    Betty: I hear your dilemma. Try going on www.alzheimerspouse.com. There are so many spouses that can help you. That site has been a lifesaver to me with their practical suggestions. This Mayo site is great also.

    - shirley

  • July 6, 2011 7:22 p.m.

    I have been married to my husband for 55 years and he has been diagnosed with AD. I have been his lone caregiver for 5 years, or longer, and 3 years ago he had a stroke, which makes him less physically able to do anything he always did. He was a person who did everything, and now, he can hardly make a sandwich. Today, I took him to Adult Day Care, but they called me after 4 hours to come and get him as he wanted to walk home and was getting restless. (The center is very close to our home). He has yet to acknowledge that he was anywhere today, or that he did anything out of the ordinary. This is typical of him. Now my problem is, do I keep going to day care, do I shorten the time span. I do need a break from the constant questions, the constant repetetive stories, or do I wait until he doesn't know whether he is home or not. I cannot stay home all day and wait for them to call me to come get him. That defeats the purpose. Help.

    - Betty

  • July 5, 2011 10:58 p.m.

    I have been married for 57 years to my husband that now has Parkinson's disease, he is 80 & I am 76. PD patients have dementia also along with some of the same problems as Alzheimer's patients. I took my wedding vows as, for sickness or health and believe that the Lord will not give me more than I will be able to handle. Wake up every morning saying what are you sending me today, Lord. Please help me with it. Somedays I think he is really putting the pressure on me.ha ha I had read that a person said they uses a computer chair to make her husband feel important. I use my computer chair to move my husband up to the kitcken counter and when his legs lock up on him while trying to walk. I grab the chair and can wheel it right up to him and get him set down. He don't like to use his walker, says someone is pushing him to fast. I can wheel him right to the door and get him in the car also get him into the house when we return. We have a wheel chair but he preferrs the computer chair. It has a high back and is leather so if he spills anything on it I can clean it very easy.I do take care of him myself, meaning bath,shaving, hair,complete dressing daily. He can stil handle eating by him self but needs help with cutting his food up. I have yet to set down and cry for I try to do my things around the house when he naps in the day. We went for 6 weeks with only 3 hours sleep a night, non in the day. God Bless all CareGivers, we are special people, remember. Always keep your chin u

    - Julia

  • July 4, 2011 6:21 p.m.

    I am in the process of enrolling my wife of 43 years in adult day care once a week. She has moderate to severe AD, having progressed these past 6 years. My advice is to not wait until your spouse is not able to process what is going on and reach an understanding that this mental health time is needed for the marriage/caregiver relationship to continue strong. Fortunately, my wife got it, and reminds me that although she is not crazy about day care, it does give me a break. That, of course, does not solve the guilt issue, but it does give me permission. I was ready to persist against oposition, but that was not necessary. It is always a difficult matter as to how much discussion of AD is appropriate. My wife weeps when I raise the matter of her illness, so I tend not to discuss it except when there is no alternative. We strive to find happiness each day, and to take strong physical activity each day by hiking or walking. I know there will be a time when there will be little happiness to be found, and walking together will not be possible... but those are issues for another time. I do appreciate this newsletter and the remarks of those who add comments. Both staff contributors and bloggers have given me permission to make changes and accept my feelings. Thank you to each for helping make caregiving more tolerable and enjoyable. There are some true saints out there! Again, do not put off too long getting some respite time. Be strong!

    - Dick

  • July 4, 2011 1:55 p.m.

    I started getting the newsletter about a few months ago. It sure has turned out to give me some relief with the pressures of being a caregiver 4 a person with alzheimers. I am 31 years old and have been cring 4 my grandmother 4 about 3 years now. Her disease is progressing quick and it has sure been taking a toll on myself and my family. It seems like over nite she has gotten combative, depressed, and going through a milion of emotions in what seems like a second. This has 2 b the hardest thing that i have ever had 2 do. Make good decisions 4 her but try not 2 feel bad 4 what the next step should be. I want to say thank you for all the information i have been reading, it sure has lifted a weight from my chest.

    - Kim

  • July 3, 2011 9:55 p.m.

    My problem is on Sunday when the people bring us home from Church and say they will see us later that he starts in after the mean and wants to know when they will arrive. It is written on a paper which I show but he refuses to take a nap walks the house and even goes outside to see if coming. Today he went across the street and ask they people if they knew where they were. He doesn't understand time. I usually don't tell him we are going some place when we are going as he drives me up the wall asking who and when will they come. We don't have a vehicle so are dependent upon others which family is so good and others. I want to be a good caregiver but how do you call someone when he wants to know who you are talking to and who they are. I get this all the time. What do I do. I do have breaks as he goes to bed early and I stay up. He also sleeps until 7:30 but not always so I get a break there. He sits outside and waits for the mailman and I am concerned with the heat but he don't seem to mind. Thank you for listening to me.

    - Dorothy

  • July 3, 2011 9:03 p.m.

    To Donna: It is wonderful that you have a long-term care policy. just find out its provisions! Although you have to pay the first 120 days, it could be as little as an hour a day - the company doesn't care how much or how many hours you pay per day, it just counts the days. Your policy will tell you how much they will pay per day and the maximum amount of your total policy or length of time; i.e. mine will pay a total $234,000 or 3 years - whatever comes first. Also, as soon as your 120 days are over, the company will reimburse you the monthly premiums you have paid on your husband during the 120 days wait time. I was a little overwhelmed initially when it was recommended that I should have a caregiver for 8 hrs a day as I had been able to care for my husband with his dementia until he completely lost his eyesight overnight. I quickly realized then that I could handle less caregiver hours during our 120 days of responsibility and ultimately paid out of pocket about $6,000. As John's dementia has progressed I now have 7 day, 10 hour caregiver help which has helped me keep my sweetheart home with me - my primary goal. Donna, you had wonderful foresight to make the long care insurance choice "way back when" and that policy should make your life much easier. Long term care facilities and agencies are very flexible when you have a policy. Donna, know that you have what it takes to work this out for you and your husband. I'm cheering you on.

    - Pat

  • July 3, 2011 1:31 p.m.

    "don't ask for permission" from the person w dementia is te most helpful advice I will try. My mother has always been the boss and I have a deep respect for the elderly ; my attempts to get help have been huge failures because I have discussed the need for outside help. Your advice has given me courage to get help w/out discussion or permission.

    - Terry

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