Expect the Unexpected

For every challenge in caregiving there is a way to make adjustments, find support or make the situation a little easier to cope with.

Sometimes it is just standing back taking a deep breath, re-thinking the situation and diving in and trying something new.

When providing care for someone with Alzheimer’s there are several things you should keep in mind.

The first is to expect the unexpected.

The second is to understand that adjustments will need to be made frequently.

The third is that you as the caregiver are going to be the one to make all of the adjustments.

The fourth is acceptance Alzheimer's is what it is. Alzheimer's is the result of the brain dying. (In the case of Alzheimer’s perhaps that should read, “It is what it isn’t)

Unexpected

Adjustments

Self-sacrifice

Acceptance

If it helps, draw yourself a little diagram and put this on your refrigerator.

If your feeling challenged and need a few suggestions for coping with those challenges~ Ask Dutchy!

New Bathroom for mom!

Wow so you have the opportunity to build a bathroom from scratch for your mother! What a blessing. Here are some things you may wish to consider.

1. When your mother is no longer to walk and transfer herself, you will want to minimize the lifting. A roll in shower may be your best option. http://www.paraquip.com.cy/05_apthw.jpg If you chose to build a regular bathroom that will be used at a later time a bath transfer bench will be your best bet. I have found a picture for you of the one that I used in my adult family home. I believe it is the best transfer bench around.


This type of transfer bench is the top of the line. I prefer it for several reasons. The cushioned seat works to not only provide comfort when they are sitting on it, as apposed to a hard plastic bench, but the cut out "toilet seat" helps them maintain their balance, and provides a place for BM's to fall through. They will happen in the shower, and if they are on the hard plastic, it is very difficult to clean up your loved one and the bath bench. This bench is also handy for sitting transfers. If you will notice part of bench is out of the tub. The bench is also more stable than the ones that are just seats in tub. Here is another link to a site that has bath benches.


Grab bars are another thing you will want to think about. I have provided a link for you. Depending on what type of shower/bath you end up installing, here are a few diagrams for you to look at.

Next toilets, yuck! A few things to consider here. Messes are very hard to clean up around your standard toilet! Perhaps you would consider a wall hung toilet that you can put at any height, and clean around when accidents occur would be best.

As far as carpeting in the bathrooms goes...I currently clean the home of an elderly woman who has carpets in her bathroom. My advise...don't. Look for low pile throw rugs, that can easily be picked up and washed. Keep in mind you will most likely be assisting in the bathroom at shower time anyways! The rug can be placed over the transfer bench to dry in between showers.

Hopefully, this will get you pointed in the right direction! ~ Dutchy

Come Glow With Me

~Please Spread the word, pass this on to a caregiver or a friend who's loved one has Alzheimer's/Dementia.

An invitation to come glow with us.

Across the country and around the world there are thousands of people fighting the dark battle of dementia.

Holding their hands and leading the way are a group of primary caregivers - the loved ones who want their special someone to live their live with dignity and pride.

Day in and day out we struggle to find a piece of hope - a shred of light on this terrible disease and a way to cope with it.

In recognition of this, the 100th anniversary of
Alois Alzheimer discovering the plaques and tangle traits of Alzheimer’s disease, we have formed a group to try and shed some light on the struggles we face each and every day.

We are ‘Eclipsed’
‘ Entwined carers of loved ones placing the spotlight on dementia's’

Dementia is like the moon eclipsing the sun. We cannot stop it yet, we can only try to slow it down and appreciate the light of our loved one while we still have it. Eventually we are left with just a brilliant ring, one that is everlasting and forever a part of us.

We will be sending the following notice to the public - our friends, our politicians, our medical society.


An invitation to ‘Come glow with us’ at – 8 P.M. local time on Oct 1st this year and every year.

2006 is the 100th anniversary of Dr. Alois Alzheimer discovering the plaques and tangle traits of Alzheimer’s disease.

Starting this year we want to draw awareness to our group ‘Eclipsed’. We are the Canadian unpaid, primary caregivers who support 97% of those with Dementia's. We are the brilliant multifaceted colours of perpetual energy that unselfishly and silently sacrifice our health, time and lives to fight for value, hope, dignity, respect, compassion and human rights for all those afflicted with dementia's.

We primary caregivers reach out to share our torches of experience with each other to light each other’s journeys as we suffer watching the minds of those afflicted slowly eclipse into a permanent abyss of darkness.

Now we reach out to you. We merely ask that you do not forget to remember.

Please place a string of multicolored lights on your home to spotlight the challenges of dementia's and our struggles as primary care givers.

We do not ask for anything other than you ‘Come glow with us’ at 8 p.m. on October 1st to place the spot light on dementia's and light up our lives, so we know you care about those who someday, may be caring for you.

Thank you!


Thus far we have people in Nova Scotia, Quebec, Ontario, Alberta and British Columbia who will be lighting up that night. The goal is to have a set of lights start to sparkle each and every hour, the night of October 1 - so that we as caregivers will know for at least one night anyway, that somewhere through the darkness another set of lights are shining and another and another - and hopefully someday they will connect brightening the path for those who walk our journey in the future.

36 hour day

Several years ago I was introduced to a book called The 36 Hour Day. It is a well known basic book for those who are caring for a loved one with Alzheimer's Dementia.

The kind person who introduced me to this book, had been caring for his mother in law in his home for several years. I now was providing that care.

Night after night I would listen to his mother in law drag her commode accross the wood flooring in her room. She thought it was a walker. She thought her chair was the commode and also thought night was day. He suggested this book, after I had many sleepless nights.

The first Chapter I read was on dealing with Problems of Bahavior. The 36 Hour Day was essentially the first book written for caregivers of those with Alzheimer's and Dementia. It was a God send.

Since this book there have been many others written on the subject of Alzheimer's and Dementia.

Another great book that I would recommend is Into The Mist, When Someone You Love Has Alzheimer's Disease.

To see a book review of Into the Mist

To find out what books other caregivers found helpful

Varicose and Spider Veins

Varicose & Spider Veins

Varicose veins are veins in the lower legs that are distended, widened, and in some cases, twisted. The veins most commonly affected by this problem are the ones just under the skin, called superficial veins. Besides the obvious swelling of the veins, symptoms are aching legs, muscle cramps and a feeling of heaviness in the legs. Because of bruises, blood may leave the veins and ulcers on the leg may appear. Varicose veins may also appear around the anus, and are called hemorrhoids. This situation, which is described in more detail in our section on hemorroids is caused by constipation, improper diet, and sitting too long in a seat without enough padding.

Doctors have a nebulous catch-all phrase, chronic venous insufficiency or CVI, to describe vein circulation problems. All this means is that a person's vein circulation system is failing and blood is backing up either in the tissues or the veins. When blood backs up in the tissues, it produces edema (swelling). When it pools in the veins it is called varicose veins. Symptoms of CVI include nighttime leg swelling, leg pain and cramping.

Causes

The primary cause of varicose veins is a breakdown of the valve system in the veins. Blood carrying nutrients to the cells is pumped from the heart through the arteries to the legs. The depleted blood then returns to the heart through the venous system - veins having one-way valves. If one or more aggravating factors are present, the swollen, distorted veins, which are called varicose veins, may develop. Age and extra weight, especially in the hips and waist regions, are some of the contributing factors. With age, the valves and veins become weaker, and muscle mass and tone tend to decrease, thereby impeding the return of blood to the heart and increasing the risk of developing varicose veins. These factors may cause the valve to leak or fail, allowing blood to accumulate in the veins, causing them to stretch.

Any activity that may add strain to the circulatory system or constrict the flow of blood may be a contributing factor. Prolonged standing or sitting, lifting heavy weights, long-distance running, lack of exercise and obesity are some of the factors to be considered. Wearing tight fitting clothing or boots are other possible causes. Aging, pregnancy, hormonal changes, and dietary deficiencies are also contributing factors.

Tips

• Avoid standing for long periods of time. This will reduce pressure on the valves in the veins in your legs. If you are pregnant of if your occupation puts a lot of stress on your legs, wear support stockings.

• While standing, get on your tip-toes by lifting your heels off the floor. Do this twenty times, relax for a few minutes, then repeat. This exercise will strengthen your calf muscles and promote circulation.

• Your job or hobby may be the cause of your varicose veins. If you have to stand or sit too long in one position, this may cause circulatory problems. Crossing your legs may greatly enhance your problem, too. Try changing your work or sitting conditions and take the mini-breaks mentioned above. Varicose veins did not happen overnight and alleviating them will take time, too. Be patient.

• Heat dilates blood vessels so the veins are more visible after hot showers or baths. Try cool, quick showers instead of hot soaks. Cold compresses can also temporarily hide veins.

• Elevating your feet whenever possible will reduce the pressure in your legs. Use a recliner or ottoman when reading or watching TV, or if you read in bed, elevate your feet with cushions or pillows.

• Weight may also be a problem. Exercise and dietary changes to lose weight will be very beneficial to relieving varicose veins.

• Jump rope to strengthen the leg muscles and blood vessels. Begin slowly to build up tolerance; jump one minute per session and slowly build up to 5 minutes.

• Rubbing your legs with some sort of soothing lotion such as St John's wort oil, lanolin, or massage oil will relax the leg muscles and improve circulation. Gently massaging with an upward motion with your palms or fingertips and occasionally squeezing your legs will help force blood out of the veins in your legs and back to the heart.

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Changes to Make

Dietary

• Constipation is one of the leading causes of varicose veins. Although it may initially be hard to see the connection, let us explain. Constipation may restrict the blood as it returns to the torso through the deep veins in the legs. Straining to have a bowel movement closes off the veins. As the blood backs up it takes another course through superficial veins, thus the blue streaks in the legs. As part of our recommended wellness program, we suggest a diet low in fats and refined carbohydrates, and high in fruits, vegetables and whole grains. This diet promotes health for the entire body, and, in the case of constipation, the high-fiber diet promotes regularity.

• Eat more ginger, garlic and onions. These foods help break down the fibrin surrounding the varicose veins. People with varicose veins have a decreased ability to break down this substance.

• Some people recommend going on a juice diet one day a week to improve regularity.

• As part of dietary changes a program to lose weight will greatly help prevent or ease varicose vein problems. Carrying too much weight creates extra pressure on your heart and interferes with circulation.

Supplements

As with so many diseases, there are underlying nutritional problems, that, if corrected, may well alleviate or eliminate the disease. We recommend the following supplements to help strengthen the circulatory system.

Vitamin A Intake of 25,000 IU, for skin integrity and to promote ulcer healing.

B-complex to help maintain strong blood vessels.

Beta-carotene This antioxidant is a healing nutrient.

Bromelain This nutrient aids in activating a factor that promotes the breakdown of fibrin and help prevent blood clots.

Vitamin C and bioflavonoids to aid circulation, promote healing of sores, and strengthen vein walls.

Calcium A calcium supplement will help stimulate the venous system.

Lecithin Take one tablespoon of granules (or two capsules) daily to emulsify fats and aid circulation.

Magnesium To relax the arteries and muscles in the legs.

Tissue salts Take two tablets of 6X Calcium Fluoride, mornings and evenings, to improve elasticity of blood vessel walls.

Vitamin E Take 300 to 800 IU, in gradually increased doses, to promote and improve circulation. Vitamin E may also relieve calf pain due to narrowing of the arteries.

Vitamin K will help.

Zinc Take 50 mg. daily, to assist with healing and collagen formation.

Exercise

• As with any wellness program, exercise is an important component. Exercise helps promote circulation and improves muscle tone. People with varicose veins need to have moderate exercise as opposed to more strenuous forms, such as high-impact aerobics, jogging, strenuous cycling or other activities that increase the blood pressure in the veins. Walking, weight training, low-impact aerobics and swimming are a few of the preferred means of exercise, but anything that helps shift your weight or standing or sitting position will help. If you have a bad problem, take short breaks several times a day and walk around and stretch.

• As we age we lose muscle tone and the skin loses its elasticity. Veins that are undergoing pressure from some of the factors mentioned above will have a tendency to bulge out and become noticeable varicose veins. Any form of exercise that will strengthen the legs will help relieve varicose veins. Consistent exercise over several months will generally reduce the throbbing and aching often associated with varicose veins.

Clothing

• Clothing that is too tight, including shoes or boots, will restrict circulation and may be the cause of your varicose veins by not allowing the blood to properly flow through your body. Snug fitting girdles, pantyhose, belts, and boots and shoes, especially high-heels, cut off circulation, thus forcing blood to seek alternative routes or causing back-pressure on the veins. Support hose, on the other hand, helps promote circulation. Make sure it is the kind that is tighter at the ankles, gradually decreasing the pressure as they get higher up the leg. If you can't find a good over-the-counter brand, they can be medically prescribed.

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Remedies

Folk

Aloe vera Aloe vera gel can be applied to relive itching.

Apple cider vinegar The old stand by - apple cider vinegar - has shown significant benefits for relieving varicose veins. There are several variations to choose from. Twice a day apply cheesecloth or other bandages saturated with vinegar to the legs for 30 minutes. Lie down and keep your feet somewhat elevated.

• Another variation of this remedy is to apply straight vinegar night and morning using a cupped hand. To accelerate the results, after each session slowly drink a glass of warm water with two teaspoons of the vinegar. Shrinking of the veins should be noticed at the end of a month to six weeks.

• For another remedy, mix three tablespoons of sugar, two tablespoons of vinegar, and one pint of warm water. Drink this mixture daily. Or, mix two tablespoons of vinegar with honey, and drink.

Aspirin An aspirin a day may relieve the pain of varicose veins by thinning the blood, thereby making it easier to circulate.

Cayenne pepper Take a teaspoon in a cup of hot water three times a day. This will stop the pain in your legs and reduce the varicose veins by making the blood flow better. This remedy may take a week or two, but is very effective. Then keep on a maintenance dose of one teaspoon twice a day.

Chlorophyll Chlorophyll provides stronger blood which helps revitalize the vascular system in the legs. Chlorophyll is also a rich source of vitamin K - the anti-hemorrhagic vitamin. Because of poor circulation the blood does not have enough oxygen and minerals to nourish the veins.

Cod liver oil/honey Make a blend of half cod liver oil and half raw honey, bandage, and leave on overnight.

Epsom salts Alternating 2 minute icy-cold and very hot soaks (with 2 tablespoons of epsom salts per quart of water) for ten minutes daily will stimulate circulation.

Garlic Eat plenty of fresh garlic.

Sugar, powdered For ulcers that may form on varicose veins, apply dry powdered sugar.

Witch hazel Apply witch hazel, an astringent, twice a day to the veins, or take 10-60 drops of witch hazel tincture four times a day.

Herbal

Horse chestnut (Aesculus hippocastanum) Studies done in Europe found that horse chestnut helped to increase blood flow up and out of the legs, strengthen connective tissue, tighten up veins, decrease redness and swelling, and relieve painful leg conditions caused by poor circulation. One of its compounds, Aescin, has been found to close the small pores in the walls of the veins, making them less permeable. This strengthens the vein walls and reduces leakage of fluid into the surrounding tissues. Take horse chestnut capsules containing 50-300 mg of aescin 2-3 times a day, or 1-5 drops of horse chestnut tincture three times a day. Improvement should be within six weeks. Avoid horse chestnut if you have liver or kidney disease or if you are pregnant or breast feeding. Unlike diuretics, horse chestnut is unlikely to cause potassium deficiency or other side effects.

Horsetail (Equisetum arvense) Take 20 to 60 drops of horsetail tincture 3-4 times a day.

Pycnogenol, sometimes sold as OPC or PCO, made from pine bark extract, significantly improves symptoms of CVI. Pycnogenol contains flavonoids with anti-inflammatory and antioxidant properties. Several studies have shown their significant benefit for CVI conditions. Start by taking 100 mg three times a day for two months with food or on an empty stomach. Subsequently, adjust the dose to 1 mg for every two pounds of weight for a month, then 20-50 mg daily for maintenance.

Tea Drink a tea several times daily made by combining the following herbs: St John's wort, Yarrow, and Arnica root (we stress the root, as the flowers are not for internal use). For pregnancy, start using this tea several months before delivery as it has been shown to be especially effective for reducing vein problems during and after pregnancy (and other forms of surgery, too). It is also good for ulcerated legs. If you can get tinctures of the fresh herbs, they are stronger. Again, only get the tincture of the Arnica root.

White oak bark Drink 3 cups of white oak bark tea daily.

Homeopathic

Lachesis To relieve painful inflammation, take Lachesis 10x and 12x.

Calcarea fluorica at a potency of 12x. Take two tablets (0.125 gr each) three times daily. This, taken with Yarrow will help improve the elasticity of the walls of the veins.

Spider Veins

Spider veins normally appear on the face, neck, upper arms or thighs and are often characterized by a small round, red spot with tiny red veins radiating outward like a spider's legs. This condition is known as spider angioma or spider telangiectasia. They are chronically dilated capillaries usually caused by excessive alcohol, medication, or elevated estrogen levels that occur during pregnancy, postmenopausal estrogen therapy, or perhaps exposure to estrogen-mimicking substances, such as petrochemicals and xenoestrogens derived from pesticides (Ed: this last possibility is a supposition on the part of this website only, and might be a cause if you have estrogen dominance or fibrocystic breasts). Quite often it occurs with cirrhosis of the liver.

This condition is harmless to your health, however some people want to treat it for cosmetic reasons.

Spider veins can come and go. If you are undergoing estrogen therapy, consult with your physician about reducing the dose. One way to eliminate spider veins is to undergo sclerotherapy, which involves injecting a substance into the veins that destroys them. Laser surgery is another but more expensive option. Two other traditional methods of treating spider veins are cryotherapy and cauterization. Caution: stay out of the sun until you are completely healed, which should be fairly brief.

We suggest trying some of the remedies for varicose veins mentioned above, especially ones with bioflavonoids such as pycnogenol (PCO or OPC), quercetin and bromelain. If used regularly, horse chestnut, horsetail and witch hazel will prevent spider veins. Vitamin C will also be beneficial in your protocol. These supplements will help strengthen the integrity of the capillaries, reduce inflammation and aid in healing.

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Article was modified in that I did not leave their links in. To view their links, please click on article source

~ I found this article very interesting and thought perhaps it would give you a few ideas to help those who you are providing care for~ Dutchy

EOAD Part ll- Happy Birthday Donna

Thursday August 10th.
Happy Birthday to you. Happy Birthday to you. Happy Birthday Dear Donna, happy birthday to you.

Today is Donna's 56th birthday.

"Donna remains on 100% oxygen. She opens her eyes for a few minutes
once in awhile. She is being attended by the nursing home staff and a
24/7 hospice nurse. They keep turning her and keep her clean and warm
and fed.

The hospice chaplain and case worker have been in touch with me
asking if I have thought about funeral arrangements. I told them
I was on it. I asked them both to PLEASE find a priest that is local
to the nursing home so that last rights could be given. They said it
would be taken care of.

Preliminary funeral arrangements have been made.
The "who, what, where and how much" stuff is done, anyway.
I'm planning a memorial service here for our friends and co-workers." ~ Richie, Donna's Husband

Up until 6 years ago Richie and Donna were leading a fairly normal life. At the young age of 49 Donna was diagnosed with Early Onset Alzheimer's Dementia.


"In the begining my wife started to forget little things. No big deal right? Everyone forgets. Thens she started losing jobs. That is not like her at all. With that her self esteem took a nose dive. It was about 2 years from not quite right to diagnosis." Richie


For a spouse of someone with Early Onset Alzheimer's there life is significantly altered.

"I have put my life on hold because my priorities change daily.
My life is centered around my wife's care and my job...THAT'S IT!

My "job" includes my work and keeping the house and finances in order.
I'm on call 24/7 and the department is short-staffed.

My wife's care includes dealing with medicare, medicaid, lawyers,
doctors, pharmacies, hospital staff, nursing home staff and family.

I too, would like to go back to school...especially now, after dealing with
this disease. I too, want to help others. I will (maybe), but not right now.
It's not time to move on yet. I'm needed RIGHT WHERE I AM.
For me that's an easy choice because actually, there is NO CHOICE."

My current responsibilities greatly outweigh any future plans." Richie


It is difficult socially, because friends just do not understand. They cannot put their lives on hold for you.

"I was told by a so-called "friend", "I really don't want to hear about it anymore."

One part of me wanted to knock him on his butt (some friend, huh?). The
other part of me didn't want to hear about it either. When people ask me
now, why I'm so quiet, I just tell them, "I have nothing good to say."

We just don't "fit" anymore...just damaged goods, I guess." Richie

You have to reajust to life on your own.

"The memories are now, and will always be, warm memories.
The problem is that one can not share/relive those memories with
the one person who made those places and times so special.

That being said, I've booked a hotel near Sea World and will be
trying to play "tourist on vacation" next week. One week of not
having to go to work. One week of not bouncing around inside an
empty house. I'll be closer to the nursing home there than at home,
so I'll actually be visiting more.

I've got to start doing things on my own... a bit.
Guess it's time to try...a bit." Richie



You must become an advocate for your loved one.

"I found it to be down-right apathy by doctors and one doctor in particular.
His attitude was, "Who are YOU a mere mortal, to tell ME, A DOCTOR what you think!"
This doctor was certainly "concerned for HIS mortality" when I cornered him alone
in a hospital elevator because he WOULD NOT listen to me about what my wife needed.
"CAN YOU HEAR ME NOW?" We even took our case before the hospital administrator...another putz.
It wasn't until 3 hospital stays later, that I FINALLY got a few doctors to start listening to me (in another hospital, of course) When doctors WILL NOT listen to informed family members,
they can miss a big part of a diagnosis...and hence, miss proper treatment." Richie



You must figure out how to deal with caregiver guilt and depression.

"Emotionally, my biggest struggle is in watching my wife decline knowing there is nothing I can do about it. Now my biggest problems are dealing with this phase of the disease and in knowing what comes next, no one wins with AD!" Richie

You are forever changed by the experience and in that change you figure out how to help others.

"......don't wait to get POA's, wills, living wills, trusts, etc. Set up ASAP! AD patients can decline quickly and might not be able to reason or sign their name. Work with an elder-law attorney to get legal matters, as wellas, finaces set up properly. Medicare, medicaid and Social Security disability are difficult to get , but are necessary. Get any and all help you need to get and keep your benefits." Richie


You eventually find a way..... your way!

" Never stop fighting.......never give up. Find out all of the information you can about this disease. Know your enemy. Take one day at a time. When things get rough and one day at a time seems too much, take one hour at a time. Find one good thing that happened everyday and hold on to it!!! Focus on that one good thing instead of dwelling on the bad." Richie

Perhaps most importantly though, you never give up hope!
"Oh dear Lord...my baby is broken. Could you please fix her?" Richie


WARNING SYMPTOMS FOR EARLY ONSET ALZHEIMER S DISEASE

The early-onset patient is often still active in his or her career, family, social obligations, hobbies and religious persuasion when productivity is suddenly cut short. Some falter much more rapidly than others; some level off at a plateau where they remain for as many as 9 or lo years before sustaining further deterioration or perhaps dying of an unrelated cause. This appendix lists the most common symptoms. All symptoms do not apply to all patients, however.

If anyone reading this list recognises the warning signs, they should undergo a complete and thorough physical immediately. Many other treatable and curable ailments can cause symptoms similar to Alzheimer's disease.

Checklist
1.Unusual confusion and short-term (recent) memory loss occurs, akin to a transient, innocuous blight. You may remember the information tomorrow, but not today, when it is needed.

2. Becoming lost, even temporarily, in what should be familiar surroundings. Anyone can lose their house keys. If you have the keys but cannot fmd your house, you're in trouble.

3. Losing your 'label' system. Cannot recall the names of well-known people or even family members.

4.Work efficiency spirals downward, causing great anxiety, tension, depression. Everything seems to overwhelm you.

5. Speech is usually fluent, but you may suddenly lose a key word in mid-sentence. You improvise by substituting another word which may not be appropriate.

6. You have to carry notes around in order to per form the most routine duties or errands.

7.You become secretive, hiding away evidence of your lapses of orientation or memory.

8. You always seem to be looking for a lost item.

9. Weight loss is sometimes experienced, as is insomnia.

10.Sudden change in sexuality, libido. Usually this is an acceleration; however some male patients experience impotency.

11.Spatial concept is sometimes affected; you experience awkward accidents or clumsiness.

12. Your language may become saltier than in the past and you may dress or behave inappropriately in a momentary lapse of decorum.
article source

Donna,
While you are dreaming your wonderful husband is standing by your side.
If you could see how wonderful he has been, you would smile and be so proud.
We are all sorry that your life is being cut short by this terrible disease! We are honored to know you through Richie. We are all praying for your comfort! Happy Birthday! ~Dutchy Hatmaster and the forum members of mycarelink.