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The Ribbon - Care for Caregivers
Volume 2, Issue 2
January 22, 1999

Since so many of our loved ones want to "go home" I thought this article might be of some use to many.


Wanting To Go Home

Practical suggestions for understanding problem behaviors

Possible Causes

Physiological or Medical Causes

  • Direct result of physical changes in the brain.
  • Unable to recognize home as home, due to memory loss or changes in perception.
  • Depression.

Environmental Causes

  • Stress level too high. Too much activity or noise can make the person want to go home.
  • Feels bored - not enough activity.
  • Recent move to new, unfamiliar place.

Other Causes

  • Feels insecure or frightened about the changes taking place in self or life.
  • "Home" means home of childhood. People with dementing illnesses may be searching for a home that no longer exists.
  • "Home"; means a time when life felt more comfortable.

Coping Strategies

General

  • Go for a walk or drive. Getting out, even for a short time, is helpful. Upon returning home, the person often recognizes it as home.
  • Respond to the emotion being expressed, e.g., "Are you feeling scared?" or "I know you are feeling lonely."
  • Offer reassurance, e.g., "I will take care of you," or "Don't worry. You will have everything you need here."
  • Look at a photo album with pictures of person's childhood. The chance to reminisce about the past may ease the anxiety and trigger pleasant memories. Avoid asking a lot of direct puestions that rely on memory and may cause anxiety.
  • Try to redirect the person's attention with an activity, food, music, dancing, a walk, or other exercise. Often, after a while the person will forget about wanting to go home.
  • Remove objects that remind person of going home, e.g., hats, coats, purse, coat rack, etc.
  • Try keeping a diary or log. Write down every time this behavior occurs. What time of day was it? What happened just before it began? Who was present? What was going on in the environment? Sometimes a pattern may emerge. If the person is particularly insecure or frightened at the same time every day, establish a very specific routine to help build security, and look for distractions to help get through that time of day.
  • Examine routine for events or stresses that may be causing or encouraging wanting to go home. For example, in nursing homes or foster care, shift changes are often stressful times; Some people's anxiety about going home is triggered by noisy, confusing shift changes.
  • As a last resort, ask doctor about medications to calm the person, if the behavior is very frequent and agitated, and nothing else works.

In a nursing home, adult day center, adult foster care home

  • Ask the person to assist staff in some way, (e.g., help set table, sort laundry, greet people) to help him/her feel more useful, important.
  • Keep outdoor clothing out of sight.
  • Work out a telephone routine with family members, if a phone call is reassuring. This might involve a daily or occasional call at a time when staff know the family member will be home. Sometimes, merely giving the person the relative's phone number to keep in their picket can be reassuring.
  • Try a reassuring tape recorded message from a family member. It might tell a day care client when he/she will be picked up, and reassure that family knows where he/she is. It might help to tell a nursing home resident that he/she is loved and missed and that family will visit soon. However, for some people, a tape is more confusing than helpful.
  • Try having the person carry a letter that provides a brief biography describing memorable events from his/her life. For example, one such letter told when and where the woman was born, whom she married, names of her children, etc. For someone who can still read, this can be very reassuring.

In a long term care setting

  • Have family stay with the person the first day of a move into a long term care setting. This is often a disorienting, frightening experience and family presence may be helpful.
  • Try a large poster on a resident's wall or door from family that lovingly describes their last visit together and mentions that they will be coming again soon.
  • Try a "visitors' book" that family and other visitors write in. Staff will need to reinforce this by reading it with or to the person. It can help convince a resident that he/she is still loved and visited, and is not forgotten.
  • Try looking at the resident's room together and identifying personal possessions. (But don't argue or try to be too logical with the person if this approach doesn't work.)
  • Have someone go for a walk outdoors with the person who is determined to "go home to mother's house." Eventually the person may tire or be distracted.
  • If this behavior occurs in the evening, try suggesting that the person spend the night since it's late and go home in the morning.

In a day care setting

  • Try making lunch later in the afternoon. Some day care centers have found that the time after the meal is when people begin to get restless and want to go home.
  • Have family members write short notes describing their own activities during the day, e.g., "I am going to lunch with Ann and will be here to pick you up at 2:30 p.m. Have a nice time. I love you. Your daughter, Joan."
  • Try a note from the family member that instructs the person to remain at the day center until a specific time when he/she will be picked up. "Mother, please stay here until 2:30 p.m. when I will come to get you. Love, Jan."

Other Considerations

  • Wanting to go home is sometimes a phase that eventually passes as the illness progresses. It often seems to be one of the most frustrating and difficult behaviors for both family members and staff, and often requires a great deal of tact and creativity.
  • Wanting to go home is often connected with the desire to see loved ones who are long dead. Don't contradict the person or try to reason about it, which may provoke pointless arguments or may cause unnecessary grieving if the person had fogotten the death. Instead, try to get the person to reminisce about the person or home which is being missed. Again, it can be helpful to help the person express the feelings of loss, fear, or insecurity, which he/she may be feeling.

References

  • Alzheimer's Association (ADRDA) Chapter Newsletters
  • Mace, Nancy and Peter Rabins. The 36-Hour Day. Baltimore: The Johns Hopkins University Press, 1981
  • Powell, Lenore and Katie Courtice. Alzheimer's Disease: A Guide for Families. Massachusetts: Addison-Wesley Publishing Company, 1983

Happenings

If you haven't visited The Ribbon website lately, you need to go and check out the newest idea that Kevin, Weather91, has come up with.

He has added a Message Board so questions and answers can be posted. You will need to register to enter but I promise, it doesn't hurt.

You may access the Message Board by going to TheRibbon.com and then clicking on the Message Board button or you may go straight there by clicking this link: The Ribbon Online Discussion Forum Message Board You can also use this board to find others in your area to talk to.

Thank you, Kevin!


In Passing: Those We Must Remember

From Guydeen@aol.com

To the wonderful people in our support group. My Aunt passed away in her sleep Jan. 15. I wish to thank all the caring people who's help kept me going when the darkness descended. It meant so much to know you were all there understanding what I was going through. I will think of you often and keep you in my prayers.

Sharon (Guydeen)


EMail Box

From LIZA 513@aol.com

Hi everyone,

As some of you know, January 31 is Alzjane198's birthday. I think a 'card shower' would be wonderful...what do you think? Of course it will have to be 'snail' mail and we would probably have to send them off by sometime this weekend for Chuck to have them to take to her on January 31. Again, if you need the address, let me know and will be glad to send it to you. Our second 'Mama' will probably need some cheering up...maybe a card shower will help. Till next time....Hugs to you!

Joyce
P.S. Jane's hubby, Chuck, shares the same birthday. Since he has been so good in giving us updates, you may want to send him a card also.


From MM Sunbury@aol.com

I have been receiving "The Ribbon" for several months now, but I haven't noted anything about caregivers for Developmentally Disabled individuals who might be suffering from Alzheimer's dementia. I have a Down's Syndrome daughter almost 31 yrs. of age who seems to be having all indications of going through this. I am interested in exchanging information with parents or caregivers who might be in the same circumstances. Actually my daughter lives in a home for handicapped individuals in a rural area, and I don't do her day to day care. I have already been in contact with the National Down's Syndrome Org., and the Alzheimer's Org. and read an enormous amount of information about this. I have yet to connect with anyone by e-mail who could share a little insight of what their Down's Syndrome person is experiencing, and what we have to expect for my daughter. She has been taking Prozac for several months, and now is on Zypresa as well.

Thank you.....mmsunbury@aol.com


From GivinCare@aol.com

Hello and Happy New Year.

I would like to share this grief site with anyone who lost their loved one this last year. It is a lovely site, that gave me some peace.

When Tomorrow Starts from Alzheimer's Outreach

Sincerely,
Debi Owens
Boulder, Colorado
Lost Mother to Alzheimer's Disease March 5, 1998


From eswint@aims.edu

I've written to you before and really appreciate all the help and support I've received from the AD family of friends. Now I have another request. Can someone give me some straight talk concerning Power of Attorney and Power of Attorney by Proxy? I am not going to get POA from Mom, but the Director of our local AD chapter told me that now I can use Power of Attorney by Proxy to decide when Mom should (with the help of doctors, counselors, etc.) be moved to the nursing wing of the senior home she now lives in. The Director told me that the chapter's lawyer on aging had told her that the POA by Proxy was now accepted for all medical decisions. I immediately set about getting notorized statements from my two sisters, giving me total control over medical issues. But when I contacted the Area Agency on Aging to start Medicaid papers for nursing home care, the lawyer told me that POA by Proxy still won't mean a thing if Mom says she doesn't want to be moved. The problem I'm finding is there is so much information out there from "knowledgeable" people, that I'm beginning to spin. At this point, I don't really know of a lawyer that has up to date knowledge. Can anyone recommend any literature, or even spell out what exactly POA by Proxy covers. For instance, can I now sign for my mother for pre-certifications for aricept prescriptions? I live in Greeley, Colorado.

Thanks once again, and again....

Elsa


From JDD1953@aol.com

Thanks so much for sending this newsletter, it could not have come at a better time.

My mother has many signs of dementia and refuses to got to her family doctor as he is the one who told her that she should not be driving. She seems to think the doctor and I are getting together against her. We tried to explain that it was for the safety of herself as well as others and she just says that she is ok to drive.

I have scheduled an appoint for this coming Wed. at a geratric center with a new doctor to have her evealuated both physically and psycologically to see how bad the dementia is. I have told her this doctor may be able to help her with all of her physical complaints and she is willing to go. One thing she has expressed to a family friend is that she is going to ask this new doctor why she can not drive.

So as you can see this newletter could not have arrived at a better time.

Thanks Again.


From BHthMeg@aol.com

Something you may want to mention to the other members of the group -- as a caregiver, with Power of Attorney or Guardianship, you can request that the state DMV remove driving privileges. This does not help with making the car less accessible (disabling my mother's car was the best thing we ever did), but at least IF the loved one DOES get the car, the license is no longer valid, and if stopped by a police officer, the reason for the loss of a drivers' license will be apparent. It also helps to contact the local police and sheriff offices and let them know the details on the car -- your loved one's license information, name and SSN.

Hope this helps :o)


From LauraW64@aol.com

Could you please add my brother and sister to the Ribbon's mailing list? I have not been a frequent visitor to the chat rooms for some time now. My mom was the caregiver for my dad, and things had been going smoothly. (We were the ones who took the family cruise together in April - I was quite excited about it and spoke of it in the chatroom.) Well, on December 26, my mom died in her sleep, with no warning, and luckily for her, no pain or fear. Now my siblings and I are responsible for dad's care, with the majority of the task falling on my sister's shoulders, who has moved in to mom and dad's house with her 3 kids. Dad is in the early to middle stages of Alzheimers.

This month's edition of the Ribbon was very timely for us, because dad is still driving. We all have concerns about it, but as he still drives very well and we know that driving is his main form of independence, we have cautiously been watching him and wondering when the time to stop his driving will come. All the information you gave will help us to make that transition when the time comes.

Thanks so much for all your work. I think I'll be back in the chatrooms soon...

Sincerely,

Laura Walker


From Sweetp2881@aol.com

I thought I would tell you how I got my mother to stop driving. She was in an accident and was called into court. At the request of her lawyer, I drove the 400 miles to be with her during court. Her lawyer, the judge and I met in chambers to discuss the situation. We agreed to have her retake her driving test, both written and road. She ended up failing the road test, even though she only had one error. It was especially sad, because she had been widowed for 20 years and was an extremely competent, independent, self-reliant person. She was extremely distressed over losing her license, even though her doctor told her he would help her find alternative transportation services. I might add that the judge had had her as an American History teacher in high school, and he was really distressed over what was happening to her.

My understanding is that you can have the Registry of Motor Vehicles call your loved one in to take the test. This could be done through his or her doctor, if necessary. I wouldn't be surprised if every state has a means of doing this, although I'm not sure.

The advantage of doing it this way is that it takes you out of that negative loop. They could be confused enough to not realize that the Registry doesn't normally call people in for road tests. In any case, the villain becomes the nasty government, and you can spend your time being supportive and sympathetic. I really recommend trying this alternative. If it doesn't work, you haven't lost anything. If it does, you have gained so much, and your demented loved one can retain at least some dignity out of a humiliating situation. And it certainly will help your relationship.

I did sell her car shortly after that and then had to bring her to live near me, because the situation was becoming desperate where she was living. That did make it easier. But I also think if you find alternative means of transportation and build up how much more convenient that is, they eventually will come around.

It is heartbreaking, that's for sure, but when lives are at stake, we need to take action before someone gets hurt.

I wish each and every one of you good luck.


From BHostSTS@aol.com

It certainly was a Long Good-Bye - the past ten years of the last twenty years. My Dad went very peacefully. He opened his eyes for a split second, took a deep breath and passed away.

I want to thank all of you for the many condolences, sympathies, cards and even more important all of the support I have received. I hope to see you all back in our AOL and/or in Web groups.

Thank you,

Sue (BhostSTS)


From Moose75mom@aol.com

To the person who wrote me in regards to Brighton Gardens here in Northville Michigan::: Please be careful of this new place in Omaha. Since I last wrote about them not allowing my mother to move in my mother-in-law that also has Dementia went to live there. She was just diag. with Dementia last fall after a stroke. She moved in to Brighton Gardens early Nov. My mother was refused admission to there facility and then spent her last days in a Hospice Home where she recieved excellent care. We were so gratful to the staff at Hospice for their kindness and care for our Mom during her last days with us. My mother-in-law has already been told or I should say our family has been told that Brighton Gardens is no longer appropriate for her and we should find another place for her to live. My sister and brother-in -laws were surprised that they were already giving her the boot. They did realize that she wouldn't be able to stay there for a long period of time. However I find it VERY difficult to believe that this facility has anyones best interests at heart except their own. Marriott SHOULD NOT be in the business of caring for those with ALZ. and Dementia unless they are ready to be in it for the long term. These diseases are so difficult for the families of their loved ones to cope with and just when you think you are starting to adjust to a new place to live they tell you to get out. Oh, you have 30 days!!! Good Luck!!! There are waiting lists everywhere!!!! I recommend that Marriott stay in the business of running hotels and passing peanuts on airplanes and stay out of the health care industry. They don't have a clue about these diseases!!!!! Oh, they will tell you they do. But the truth is out there!!!! They keep your deposit of $2,000.00 .Saying it's nonrefundable!!! They asked her to leave . There was no lease broken!!! My sister and I have written to corp. headquarters and have never heard from them. We have met with the manager of Northville's Brighton Gardens even after there was no way our mother would be able to live there. We didn't want to see this happen to any others. The question did come up during that meeting "Just what did we want???" Did he think we were all about $$$$$ NOT!!! We don't want others treated the way our Mom was. Now less than 2 months since my mom has died they have done it again to another family member. Anyone reading this PLEASE don't send your loved ones to live there!!! While it looks lovely, beware!!!! Moose75mom


From Tweety8940@aol.com

thanks for sending me this info... i am sure it will help me and my sister alot in dealing with my mother and ad.. she was diagonsed with it at the age of 62 and we had not choice but to put her in a nursing home not that long ago.. she will be 69 in may and it is certainly a very sad disease... also coping with my dad who has cancer just about everywhere a person can.. but i have the firm belief that god never gives us more than we can handle..i am so glad that i found this chat room


Karen and I want to take a minute of your time to thank you for all your help and inspiration. Without you, our support group, we would not be in our second year of putting out The Ribbon. You continue to show that this is Your newsletter by sending in articles, links, and all kinds of e-mail.We sure appreciate all your help. Let's keep it up during this second year!

Hugs and Peace,

Karen (KMenges581@aol.com)
and
Jamie (DRMOM1955@aol.com)

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