Greetings and How are ya?
I'm sure some of you have noticed that there hasn't been a Ribbon in a while. I got just the kick in the bottom to get this out from my brother...he called and said what's going on up there? He says he keeps up with me through The Ribbon and since there hadn't been one he thought he'd call to make sure I was ok. Boy did the guilt factor come into play in my mind. (smile)
I've been working a WHOLE LOT and I don't think I will burn out on the work itself but the body does get tired. I've just been too tired to even sit down at the computer let alone think about doing any research. I finally got to do that and found a wonderful sight. I am including an article from the website later in this issue.
Nick seems to have improved a great deal. He is talking more and doing more inside and outside the house. He was even able to build little stair steps and cover them in carpet to help the dogs get up on the bed. Six months ago he would not have been able to do that. He is no longer taking Clonazepam and he has recovered from his rotator cuff surgery. I'm wondering if maybe the pain from the shoulder had a lot to do with some of his memory problems. All I know is that I'm happy to have Nick functioning better. It was hard seeing him sit in front of the TV all day and do absolutely nothing.
I bought me a "Stay Active Happy Meal for Adults" from McDonalds the other day. It had a Stepometer in it and I'm going to give it a try to see how many steps I take in a day at work. I've often wondered just how much walking I'm actually doing and now I will know. I'll let you know what the results are. Right now we are down to 7 patients so it won't be as high as when we have a full house. I will be checking both types of days.
I don't know what the weather is where you are but man it is hot here already. Nick and I are fighting over the AC control. He has become cold natured and I'm hot natured. It seems that we are always going behind the other changing the thermostat settings. My mind tells me it's much easier for him to put another blanket over him in bed than it is for me to take my clothes off. I do have to remind him that I have 4 little heaters all around my body at night. The dogs are cold natured too. (heehee) The problem is that Nick moves a lot at night so therefore they sleep cuddled up next to me. I think my solution is to let Nick get in bed then I go change the thermostat to 70 and go to bed. Now if I can just remember to change it back to 74 in the mornings!!!!!!
We have been getting quite a few new subscribers and a lot from other countries! We would like to ask all of you to send us a little email and let us know how things are with you. We consider ourselves a "family" and we like to hear from all members. If you are from another country, tell us a little bit about where you live and how we might help you with caregiving. Other countries have different customs that we aren't aquainted with and therefore some of the tips and tricks would be different. If you've come up with a workable solution to a problem that has come up we'd love for you to share it. After all, we are here to help one another. Every little tip helps make life a little easier for someone else if it is shared.
Now, on to this issue of The Ribbon!!!!
Look For Signs That An Elderly Loved One Could Use Your Help
The focus of the conversation used to be, "How are the kids?"
It was an opening to happy news of school and sports and the latest funny story.
Now, here in middle age, catching up between friends usually includes, "And how's your mother/father?"
It is an opening to news of concern and caution and sometimes even crisis.
A survey conducted recently by Harris Interactive reveals that more than a fourth of today's American workers are caregivers to an elderly loved one. A third devote more than 20 hours a week to that care. Most of these caregivers are women.
Add to these numbers the fact that in 2011, the first of 77 million baby boomers will turn 65. Caregiving is about to become a way of life for many more.
Knowing so many people in this position and having been there myself, I feel we often react to aging loved ones' needs as situations arise rather than with anticipation and planning. That's understandable. We are reluctant to bring up unpleasant "what ifs" with aging parents. It's something neither generation is eager to face.
But planning for the inevitable can take a lot of pressure off everybody, says gerontologist Linda Rhodes, creator of a kit for caregivers kit for caregivers(Link: http://www.lindarhodes.com/ ) and adviser to Home Instead Senior Care(Link: http://www.homeinstead.com/ ), a company offering support services to the elderly with several offices in Middle Tennessee.
I talked to Rhodes about several issues related to caring for elderly loved ones. Because the information she shares is vital to so many these days, I felt it warranted more than one column. This week I'm starting with signals for recognizing when an elderly loved one might need help. Next week, I'll write about her suggestions for how caregivers and loved ones can prepare together for the future. Finally, I'll tackle some of the pitfalls and emotional issues families face with caregiving and how to avoid them.
According to the study commissioned by Home Instead, plus their panel of experts, there are 10 basic signs that an older loved one may need some level of help. These can occur as early as a person's late 50s or long thereafter, depending on the individual, Rhodes says.
"Too many people rely on the parent telling them they need help," she says. "But most don't, because they want to stay independent. So there ae certain things you need to look for when you visit." These are:
Rhodes says parents often deny needing help because they think the next step is being removed from their home. Reassurance is important. Today, the growing senior support industry gives families many more choices.
"I'm always one to encourage families to look for ways for parents to stay independent as long as possible," she says. "They often think it's either home or a nursing home. It's not that clear-cut a choice. There are many steps in between."
Beth Stein writes about family issues for The Tennessean. Reach her at firstname.lastname@example.org (email@example.com)
Sunday, May 16, 2004 The Tennessean(Link: http://www.tennessean.com/ )
You must be
Host a Forgetting House Party!
When: June 16, 2004 Prime Time http://www.pbs.org/tvschedules/
We are once again calling on volunteers to host house parties across the country to be held in conjunction with the re-release of The Forgetting on Wednesday June 16, 2004.
Thanks to advocates like you, Forgetting house parties became the largest, one-time advocacy mobilization in the Alzheimer's Association's history. Over 1000 house parties took place, with representation from all 50 states and the District of Columbia. More than 14,000 letters requesting an increase in funding for Alzheimer research were sent to Congress. The parties were hosted by a diverse group of people, and at least two-thirds of those were new advocates.
Based on the best-selling book by author David Shenk(Link: http://www.davidshenk.com/ ), The Forgetting is the first television program ever to tackle the entire spectrum of the Alzheimer's epidemic - it portrays the full personal and social impact of the disease and gives viewers reasons for hope.
I hosted a House Party in January; do I need to sign up again?
Yes, based on host feedback, we have made changes to the materials you previously received. Volunteers will be provided with new host materials including: sample invitations; discussion guide; a new advocacy action and follow-up materials.
Sign up to Host a Forgetting House Party(Link: http://www.alz.org/advocacy/forgetting.asp )
In Passing: Those We Must Remember
Pegusus (Mary Etta) lost her beloved mother on May 11. Mary has chatted with us at The Gathering Place(Link: http://www.theribbon.com/GatherPlace/ ) several times and we are very sorry to hear this news. Please join us in sending your condolences to her and her family at this time. Her email is firstname.lastname@example.org (email@example.com)
After an illness, Timothy K. lost his uncle earlier this month. I know Timothy really took the illness hard and he took several days off from work to go to NC to attend the funeral. Please include Timothy and his family in your prayers during this time of grief. Our sympathy is with them.
Nick Aguilar lost his father on May 18. Please include Nick and his sister, Anita in your prayers as they grieve this loss. Nick will be going to Dallas for a Memorial Service at a later date.
When People With Dementia Walk
Guidance for Carers
"He's just home from the care centre, and he goes for a walk between 4:30 and 5, then we have our tea. Then he goes for a walk. He will not sit still unless I give him something to do. TV won't hold him. He's always been that type of man, he never sat very much. It's not till you're retired that you notice, and it's only got worse." (Carer, talking about her husband)
Sometimes people with dementia walk - this is often referred to as 'wandering'. They may walk around the house, or they may leave their homes, sometimes at odd hours of the day or night. Perhaps they can't explain where they want to go, or their explanation doesn't seem to make sense. Often the person's walking can be frightening for the carer, who worries about him or her getting lost or hurt. Or the carer may be frustrated because of restless walking.
"In Inverness, he had the roads, and he would come back. But on the island, it was so empty, and I wouldn't know where he'd gone. He could have gone along the cliff path, where the rocks were crumbling. ... You're waiting for the worst. You're just waiting to hear what might have happened. You can't sit, you can't eat, you're just waiting for the terrible news. ... So far the Lord has spared him. But there's a busy road not a mile from where we lived, and if he'd tried to cross it, well, I don't know what might have happened." (Carer, talking about her husband)
Walking can be one of the most stressful issues that a carer of a person with dementia can face. But it may be possible to improve the situation both for you and for the person with dementia.
What do we mean by walking?
A person with dementia may wander away from home, or walk restlessly about the house, apparently unable or unwilling to stay still. In the past this has been called 'wandering'. We now call this behaviour 'walking', as often it's inappropriate to describe what the person with dementia is doing as wandering: he or she may have a very definite purpose, even if it isn't immediately obvious.
"One time we saw a lot of cars parked outside, and my son said 'Oh, there must be a football match on.' And my husband said 'Oh, there's a match, I must go.' And we said 'Wait a minute, you don't have a ticket!' But he said 'What do you mean, don't be stupid, I don't need a ticket, I'm one of the directors, I've got my box.' And he just went off, we couldn't stop him. My son phoned up the football ground and told them: there's a man coming along, he thinks he's one of the directors, here's my number to call if there's any trouble. I died a thousand deaths, waiting for him. ... We asked where have you been, and he said 'I've been to the football, I had tea and pies'." (Carer)
Walking may be just a phase. Eventually the person with dementia may stop trying to get up and go places. Often in the later stages of dementia, the person becomes calmer and less likely to roam about.
Why do people with dementia go walking?
Walking may appear aimless, but almost certainly has a purpose behind it, even if the person with dementia cannot explain the reasons very clearly.
"I went out with him, and we walked for two and a half hours, and we were just in the house, when he said 'I think I'll go for a dander.' Never see him tired. But then by 9pm I'll say to him 'I think it's time for bed,' and he'll say 'yes' and then he'll go." (Carer)
What can carers do?
If you can let the person walk freely in a safe area, do so. In order to best deal with the situation of a person with dementia who is walking, consider the reasons why the person is walking. You might find another Alzheimer Scotland information sheet useful: Understanding and Dealing with Challenging Behaviour(Link: http://www.alzscot.org/info/behaviour.html ) - call the Dementia Helpline on 0808 808 3000 or read it on our website. If you know why the person is walking, you may be able to help him or her do it safely, or find another way to help.
Safety at home
Carers often worry that a person with dementia walking around at home may accidentally come to harm.
You can get help in safety-proofing your home from an occupational therapist (OT). You can contact an OT through the social work department, your GP or your local hospital.
There is no such thing as a completely risk-free environment. However, you can minimise risk.
Walking with company
Many people walk for pleasure. Walking, or other forms of regular gentle exercise, may actually help someone with dementia keep his or her mind in better shape.
You may not always be able or willing to walk with the person with dementia, but feel safer if the person is not going out alone. Ask friends and relatives for help. Perhaps a neighbour with a dog might like company on their daily walks. Some carer support groups offer group walks: it's worth asking if there is one in your area.
If the person with dementia is walking because he or she is bored, it might help to arrange outings.
"On Tuesdays, when I have him all day, we sometimes just jump on the bus to Inverness, because that takes an hour, and then we just wander around, and then we come home, and then that's one day taken care of. If we go on a bus it's not so bad, because I might see someone, and he's looking out of the window." (Carer)
Too much energy
If a person with dementia is walking because he or she has too much energy, it may help to join an exercise class. Regular physical exercise is good for people with dementia: consider dancing, yoga, tai-chi, or even a marching band. Some local councils offer special exercise programmes for older people. Talk to the person running the class and find out what's needed for the person with dementia to attend: safety requirements may mean that someone else must attend too.
For a younger person with dementia, who has been used to regular exercise in a gym, (and if you can afford it and have space), you might consider buying a walking machine or treadmill, of the sort used in gyms. In this way the person with dementia can get daily exercise without the fear of getting lost. This would probably be unsuitable for a person who has never used a walking machine before. Experiment in the local gym first.
You may find that asking the person to help with household tasks that are still within his or her ability is a diversion from walking, as well as good exercise. For example, using the vacuum cleaner, sweeping a path, or cleaning the car. It doesn't matter how frequently the task is done, if the person with dementia still wants to do it.
You may be able to divert the person with dementia from wanting to walk. Sometimes a person with dementia will forget having just come back from a walk and want to go out again, or want to go out at an inappropriate time (when it's night, or it's raining hard). Or he or she may want to carry out old routines: going shopping in his or her old neighbourhood, returning to a workplace, preparing a meal.
Giving the person a clear task to perform may distract him or her from wanting to go out. For example, you could ask the person to sort objects - tidy out the cutlery drawer or one of the kitchen cupboards. Some carers have found that they can suggest a bath as a distraction.
One carer gave her husband a box of garden tools. He would spend hours outside in the garden. The carer resigned herself to the damage he did because he was safe and active and she could watch him from the window while she did something else in the house.
Is the person really at risk?
It can be especially worrying for carers if the person goes for walks alone. If this concerns you, consider carefully whether the person is really at risk. For example, perhaps the person has never yet failed to come home, and is careful on the roads. In this case, perhaps the person's independence is worth the low level of risk. However, if the person tends to get lost or is not safe on roads, the situation is quite different.
Arrange safer routes
If the person with dementia is walking outside alone, you can minimise the risk of getting lost. Arrange consistent outside walks - walk a well-defined route that ideally does not entail crossing major roads (though people with dementia often retain basic road skills). Go with the person until you are confident that he or she has learned the route. Stand outside the house with the person with dementia and work out together how to recognise his or her home at the end of the route.
Tell people in advance
Make sure that local shopkeepers and your neighbours know that the person with dementia may have difficulty finding the way home, and ask them to help. Inform the local police station. You could also speak to the local taxi company, especially if there is one you regularly use, and the local bus company, if there is a risk that the person with dementia may catch a bus. (Obviously this will only be practical if there are regular drivers and only a few buses that the person might catch.)
Stay in touch
Make sure that the person with dementia has a contact phone number on him or her at all times when outside the house. You can get a card from Alzheimer Scotland that the person with dementia can carry: it's a small, single-folded, credit-card size, with space to include a contact name and phone numbers.
You can also get jewelry - a bracelet or a wrist pendant - from MedicAlert(Link: http://www.medicalert.co.uk/ ), a registered charity that provides emergency identification for people with hidden conditions such as dementia. The MedicAlert jewelry is engraved metal (options run from stainless steel to solid gold) and includes a 24-hour helpline number as well as the person's medical needs.
If the person with dementia is reluctant to wear the jewelry, you could try one or more of the following strategies; have it presented as a gift, especially as a gift from a grandchild or a nephew or niece; ask the person's GP to present it as a medical requirement; place the bracelet on the person's wrist next to their wristwatch or another bracelet he or she often wears, so that it is associated with something that he or she is already accustomed to. Make sure that the bracelet is sized accurately to the person's wrist measurements, so that it can't slip off easily.
If the person with dementia does not live alone, and has only mild dementia, it may be a useful reminder for him or her to carry their address in an accessible form such as a card in the wallet. But people who might be vulnerable should only carry a contact phone number.
It is a good idea to make sure that each day the person with dementia wears one or two items of brightly-coloured clothing. If he or she goes out at night, a jacket with a reflective stripe helps, or you could sew bicycle reflector strips onto jacket sleeves. Bright clothing may make it easier too if the person should get lost and you need to describe what he or she is wearing.
Finding the way home
Make sure the person's home is easily identifiable. Is the street number freshly painted and visible? What can the person with dementia see, standing on the street, that would remind him or her that this is home? If the person lives in a block of flats, can you mark the door of the flat in a very distinct way, perhaps with a photograph or a poster? Think about this both in terms of helping the person with dementia to return home alone, and also to make it easy for someone who wants to help to get him or her home safely.
Discouraging walking alone
You can discourage a person with dementia from leaving home without locking him or her in the house. Try a mirror on the door or a bead curtain over the door. However, some people with dementia may find these distressing, and this will work for some and not for others.
If the person is at risk if he or she goes out alone, for example at night, it may be necessary at times to restrict him or her from leaving (deadbolts on doors, new locks), but this is not recommended as a general tactic. There are legal issues involved in restricting someone from leaving his or her own home. There are also safety issues if someone cannot leave the house in case of fire or other danger.
But what if the person does get lost?
Always have a recent photograph of the person with dementia to hand, and if possible, a recent video. Make a list of useful information to pass on to the police: better to do it in advance even if you never need it, than try to think of things when you are panicking because the person has gone missing. Information such as date of birth, identifying marks, jewelry, hair colour, medical condition, allergies, blood type, medication, complexion, eye colour, and dental work may all be helpful to the police. Don't forget to include any other names the person used in the past - for example, a woman's maiden name.
You could also have notes of places where the police might find the person, such as old neighbourhoods, former workplaces, or favourite places.
Keep an item of recently-worn clothing in a plastic bag - you could simply keep a blouse or a pair of trousers or socks out of the wash each time, and put it into the next wash, replacing it with a more recently-worn item. This is, of course, for the kind of emergency that you hope will never happen, but bear in mind that you do not make an emergency more likely to happen by preparing for it in case it does.
What to do?
Don't panic. Check the person's usual route for walking, and ask your neighbours and local shopkeepers if they have seen him or her. Remember that someone who does not know where he or she is going will often follow the direction of the dominant hand - a right-handed person will often turn right, a left-handed person will often turn left. Think about where else the person might have decided to go to: where did he or she live in the last clearly-remembered period of his or her life? Is the person trying to return to the home he or she remembers? Has the person been thinking about going to work, or to a social club, or some other familiar place, and started out in that direction?
"He went into long-term care but he got out of the home. He went missing. The care home rang the police, but he had walked over a mile in a very little while. Someone spoke to him, and asked him his name and where he lived. He gave the address he had when he was a young boy." (Carer)
If you can, ask a friend or a relative to help you search. Keep a list of neighbours and their phone numbers. Don't forget that someone must be available at all times at the contact number that the missing person is carrying.
If you cannot find the person yourself or with help, notify the local police. Give them the person's photograph or video and the other information you have ready.
When the person with dementia returns, do not scold him or her for getting lost or show that you are upset and worried: he or she may already be anxious with the experience of getting lost. The person needs to be reassured and to return to a familiar routine.
Once the person is are safe and calm, call a friend or a relative or the Dementia Helpline (0808 808 3000) - talk to someone to whom you can vent your feelings of anxiety or anger.
Don't forget to contact all the people you asked to help when the person with dementia was missing, and let them know the outcome.
Further useful information and sources used in writing this information sheet:
MedicAlert(Link: http://www.medicalert.org.uk/ )
Stokes G. (1986) Wandering. London: Winslow Press
Hinman-Smith E. A. & Gwyther L. P. Wandering(Link: http://www.zarcrom.com/users/alzheimers/c-23.html )
Alzheimer's Society Advice Sheet (2000) Caring for someone with dementia: Walking about or 'wandering'(Link: http://www.alzheimers.org.uk/Caring_for_someone_wi th_dementia/Unusual_behaviour/advice_walking.htm )
Ageless DesignChallenging Behavior - Wandering(Link: http://www.agelessdesign.com/wander.htm )
National Institute on Aging, USA Caregiver Issues - Wandering(Link: http://www.dphhs.state.mt.us/sltc/pubs/ah.newslttr .10.2002/ah.10.2002.page5a.crgvr.issues.wandering. htm )
Grateful thanks to the carers in Invergordon and on the Isle of Lewis, who talked about their experiences of coping with walking, and to Kate Allen, Kirsten Coulter, Kate Fearnley, Katie MacPherson and Brenda Rattray, for providing information and commenting on the draft of this information sheet.
This information sheet was produced as part of the Dementia Carers Project, funded by the Scottish Executive under the Carers' Strategy for Scotland.
Alzheimer Scotland has a card for people with dementia to use to help people who serve the public to understand their special needs. You can show this to transport staff as well as in shops, etc. Call the Dementia Helpline (0808 808 3000) or apply for a free Helpcard on-line(Link: http://www.alzscot.org/info/helpcard.html ).
Alzheimer Scotland - Action on Dementia(Link: http://www.alzscot.org/ )
Editor's note: This website is chock full of great information no matter where you live! Please visit this site and read the interesting articles! I highly recommend it!
The Seattle Times: Health: Losing Betsy: A family pulls together(Link: http://seattletimes.nwsource.com/html/health/20019 12116_betsy25m.html )
This link has the stories of 3 families. It is a must read!! The site may ask you to register in order to read the stories. You may do so and it will cost you nothing. It is well worth the small amount of time to register.
My husband was officially diagnosed in Jan 01. I believe that it began in 1998. At that time he started to lose interest in using the computer to write the book he had been working on for 2 years. In 2001 I noticed he had some aphasia. (inappropriate misuse of words.) I immediately called a neurologist and the testing began. They put him on airacept.
From firstname.lastname@example.org (Mary Emma Allen)
From email@example.com (Sadie Wells)
Got your e-mail today and what a coincidence! Just today I had a call from the PA of Bill's PPO at the nursing home and she told me she saw a definite difference in Bill since he has begun the Namenda. I was really upset for about a month as he was not responding with his beautiful smile and was not at all interested in eating, taking his meds, etc. I was beginning to think this was the beginning of the really late stages of AD. I was afraid he would forget how to eat and thus not remember how to swallow. But although he is on pureed food, he is doing great. Eating every thing he is offered and taking his meds. The smiles are back and he responds appropriately to remarks made to him and is willing to kiss almost everyone. Thank God for Namenda. I know it will not cure, but at least where ever he is, he is happy and I am not ready for him to go home to God yet. Have a friend who thinks her husband is beginning with AD and I print out copies of some of the articles for her. God Bless you guys!
From CAREVOICE@aol.com (Brenda Avadian)
WOW, What a Great issue of The Ribbon. From Jamie's heartfelt update and Nick's journey to Texas to Tips from the Alzheimer's Association and letters from AROUND THE WORLD--all the way from Cape Town, South Africa (Welcome and please write more! I, for one, enjoy reading caregivers' experiences from around the world.) and far from the mainland to Hawaii and Ann's success (okay, except for the hallucinations) story of Namenda. WOW.
Keep it up Jamie and Karen and Kevin and Linda and ....
I miss you. Once we are moved (start late May through July in between travel and more) and once I send "Where's my shoes?" the second edition, to the editor, I'll be back! (Oops, the Terminator said that and now he's our Governor!)
From DKThomp@aol.com (Name)
Good Morning All,
About four weeks ago I had an attack of asthma, the first time for me, and in the course of finding out my problem the X-rays showed another problem unrelated to my current breathing problem, but one that is insidious in nature. It seems I have developed Pulmonary Fibrosis, which is a terminal disease. How long I have had it, and at what stage the disease is in are still questions to be answered. There is some medicine that may slow the disease down, but there is no known cure.
There are two prayer requests that I have. One, that I finish my race well, my prayer and intention is to spend what time I have left to be about the work the Lord has given to me and do so with every ounce of strength and will power I have, under the guidance of the Holy Spirit. Second, that I can use this time of testing to be a witness and a testimony to God's goodness to me. Lamentations 3:22, 23, "It is of the LORD's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness." He has been so faithful to me all these long years.
I am at great peace about this, "For me to live is Christ, and to die is gain." Phil 1:21.
So please pray for me as I continue in His work and will.
In His Great Love,
Hugs and Peace,