CAREGIVING – Chasing MY Life WHEREVER it Leads ME

The Elephant in the Room…

November 9, 2009 at 4:04pm

When you google dementia this is what you get:
Dementia is a loss of brain function that occurs with certain diseases.

Symptoms ~ Problems may involve language, memory, perception, emotional behavior or personality, and cognitive skills (such as calculation, abstract thinking, or judgment). Dementia usually first appears as forgetfulness.

Symptoms include:
*Changed feeling (sensation) or perception
*Changed sleep patterns
*Change in sleep-wake cycle
*Insomnia
*Need for increased sleep
*Decrease in problem-solving skills and judgment
*Disorientation
*Confused about people, places, or times
*Unable to pick up cues from the environment
*Disorders of problem-solving or learning
*Trouble making calculations
*Unable to learn
*Unable to think abstractly
*Unable to think in general terms
* Impaired recognition (agnosia)
*Trouble recognizing familiar objects or people
*Trouble recognizing things through the senses
* Lack of or poor language ability (aphasia)
*Unable to form words
*Unable to name objects
*Unable to read or write
*Unable to repeat a phrase
*Unable to speak (without muscle paralysis)
*Unable to understand speech
*Have impaired language skills
*Repeat phrases
*Speak poorly (enunciation)
*Use slang or the wrong words
*Memory problems
*Unable to remember new things (short-term memory problems)
*Unable to remember the past (long-term memory problems)
*Motor system problems
*Gait changes
*Impaired skilled motor function (apraxia)
*Unable to copy geometric figures
*Unable to copy hand positions
*Unable to dress self ~ and lack of desire to bathe, brush teeth and the ability to live with those smells and without regard to those around them.
*Inappropriate movements
*Other motor system problems
* Seeing or hearing things that aren’t there (hallucinations) and having false ideas (delusions)
*Severe confusion
*Personality changes
*Anxiety
*Decreased ability to care for oneself
*Decreased interest in daily living activities ~ often accompanied by frequent “woe is me I’d be better off dead” drama scenes
*Depression
*Inappropriate mood or behavior ~ such as blurting out whatever they may be thinking without censure, often creating ambivalence in those around them.
*Irritability
*No mood (flat affect)
*Not flexible
*Only concerned with self (self-centered)
*Poor temper control
*Unable to function or interact in social or personal situations
*Unable to keep a job
*Unable to make decisions
*Withdrawal from social interaction
*Unable to be spontaneous
*Unable to concentrate

Other symptoms that may occur with dementia:
* Incontinence
* Swallowing problems

Treatment ~ The goal of treatment is to control the symptoms of dementia. Treatment depends on the condition causing the dementia. Some people may need to stay in the hospital for a short time.

Stopping or changing medications that make confusion worse may improve brain function. Medicines that contribute to confusion include:
* Anticholinergics
* Central nervous system depressants
* Cimetidine
* Lidocaine
* Painkillers (analgesics)

Treating conditions that can lead to confusion can often greatly improve mental functioning. Such conditions include:
* Anemia
* Decreased oxygen (hypoxia)
* Depression
* Heart failure
* Infections
* Nutritional disorders
* Thyroid disorders

Medications may be needed to control behavior problems. Possible medications include:
* Antipsychotics
* Cholinesterase inhibitors (donepezil, rivastigmine, galantamine) for Alzheimer’s-type dementia
* Dopamine blockers (haloperidol, risperdal, olanzapine, clozapine)
* Mood stabilizers (fluoxetine, imipramine, citalopram)
* Serotonin-affecting drugs (trazodone, buspirone)
* Stimulants (methylphenidate)

A person’s eyes and ears should be checked regularly. Hearing aids, glasses, or cataract surgery may be needed.

Psychotherapy or group therapy usually does not help because it may cause more confusion.

LONG-TERM TREATMENT:
A person with dementia may need monitoring and help at home or in an institution. Possible options include:
* Adult day care
* Boarding homes
* Convalescent homes
* In-home care

Family members can get help caring for the person with dementia from:
* Adult protective services
* Community resources
* Homemakers
* Visiting nurses or aides
* Volunteer services

In some communities, support groups may be available (see elder care – support group). Family counseling can help family members cope with home care.

Other tips for reducing disorientation:
* Have familiar objects and people around
* Keep lights on at night
* Provide environmental and other cues with reality orientation
* Reward appropriate behaviors and ignore inappropriate ones to control unacceptable or dangerous behaviors
* Stick to a simple activity schedule

Advance directives, power of attorney, and other legal actions may make it easier to decide about the care of the person with dementia. Seek legal advice early in the course of the disorder, before the person with dementia is unable to make such decisions.
Causes

The two major causes of non-reversible (degenerative) dementia are:

Alzheimer’s disease ~ Alzheimer’s disease is the most common form of dementia. Dementia is a term that is used to describe a group of brain disorders. These brain disorders cause memory loss and make it harder to carry out daily tasks. Alzheimer’s disease develops slowly over time. The symptoms begin to appear so gradually that it is often mistaken for normal aging.

Loss of brain function due to a series of small strokes (vascular dementia)

The two conditions often occur together.

Dementia with Lewy bodies (DLB) is a leading cause of dementia in elderly adults. People with this condition have abnormal protein structures in certain areas of the brain.

The structures and symptoms of DLB are similar to those of Alzheimer’s disease, but it is not clear whether DLB is a form of Alzheimer’s or a separate disease. There is no cure for DLB or Alzheimer’s.

Conditions that damage blood vessels or nerve structures of the brain can also lead to dementia.

Treatable causes of dementia include:
* Brain tumors
* Dementia due to metabolic causes
* Infections
* Low vitamin B12 levels
* Normal pressure hydrocephalus
* Thyroid conditions

Dementia usually occurs in older age. It is rare in people under age 60. The risk for dementia increases as a person gets older.

Tests & diagnosis
The following tests and procedures may be done:
* B12 level
* Blood ammonia levels
* Blood chemistry (chem-20)
* Blood gas analysis
* Cerebrospinal fluid (CSF) analysis
* Drug or alcohol levels (toxicology screen)
* Electroencephalograph (EEG)
* Glucose test
* Head CT
* Liver function tests
* Mental status test
* MRI of head
* Serum calcium
* Serum electrolytes
* Thyroid function tests
* Thyroid stimulating hormone level
* Urinalysis

Prognosis ~ Dementia usually gets worse and often decreases quality of life and lifespan.

Prevention ~ Most causes of dementia are not preventable.

You can reduce the risk of vascular dementia, which is caused by a series of small strokes, by quitting smoking and controlling high blood pressure and diabetes. Eating a low-fat diet and exercising regularly may also reduce the risk of vascular dementia.

Complications ~ Complications depend on the cause of the dementia, but may include the following:

* Abuse by an overstressed caregiver
* Increased infections anywhere in the body
* Loss of ability to function or care for self
* Loss of ability to interact
* Reduced life span
* Side effects of medications used to treat the disorder

When to contact a doctor:
* Call your health care provider if dementia develops or a sudden change in mental status occurs.
* Call your health care provider if the condition of a person with dementia gets worse.
* Call your health care provider if you are unable to care for a person with dementia at home.

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LIFE – IT IS WHAT IT IS!

As I was scrolling through facebook this morning I ran across this post from 7 years ago. I found it speaking to me as it still describes life so well. I’m also pleased to say that even though there have been MANY (cancer, 5 surgeries and The House from HELL just to name a few of the BIG ones) curve balls thrown at me since then, I have de-cluttered my life really well, for the most part. So I offer you a rerun of that post below.

“Life has this funny way of testing us and sneaking in trials and tribulations that weren’t in our original game plan never quite fit into “OUR” plans. That is how it’s been for me the past many months.

As many of you know I have spent the last 7 1/2 months helping out various family members around the country. First it was my elderly in-laws (MIL just turned 90) who begged us to come help them sell everything including the house and move them closer to family (we all know how that went – FIL is still trying to assign sentimental prices to everything in sight) and now it is my aunt & uncle. My aunt has end stage Parkinsons disease, such a sad disease. My aunt is extremely artistic and a beautiful painter – or at least she was. The Dyskinesia from the Parkinsons disease has robbed her of that ability. My uncle recently saw the Oprah episode on hoarders and has decided that my aunt is one. Trust me, she isn’t. I once worked for a real estate company as a stager for homes and they would send me in to work on homes that were similar to those on the Oprah show – those were horrible. So ask yourself, what is my (your) happy medium on the stuff I’ve (you’ve) accumulated? My theory? If you have a place for each item and it’s in its place, you’re NOT a pack rat or a hoarder. I do offer you the definitions below.

This is one of my favorite paintings of hers. She did have a LARGE collection of art supplies and empty tins for storing those items in, but in her defense men do think in simpler terms and this is just a meeting of the minds discussion. And in his defense they should be getting rid of most of this as she is now in a assisted living home and will not be able to use these items again. Donating them to the church or a school while they are still usable would be best, but can’t be forced. I pray that I will have more grace regarding these type of decisions if I reach that point and give up things more willingly, but none of us can ever be in one another’s shoes and truly know what we would do.

PACK RAT

~~Also called trade rat. a large, bushy-tailed rodent, Neotoma cinerea, of North America, noted for carrying off small articles to store in its nest.~~
A person who collects, saves, or hoards useless small items or an old prospector or guide.

HOARD

a supply or accumulation that is hidden or carefully guarded for preservation, future use, etc…
to accumulate money, food, or the like, in a hidden or carefully guarded place for preservation, future use, etc…

Long story short (I know too late), I have decided it is time to take back MY life. So, over the next couple of months I will be making some changes. Some big, some small, but ALL necessary to be myself and get a handle on MY life.”

My aunt passed 4 years ago and in the end they found she did not have Parkinson’s disease, but did have Lewy Body disease. Unfortunately the only way to tell for sure is through an autopsy. The treatments are similar and in the end would not have changed much. She was offered the DBS (deep brain stimulating) surgery early on and refused it (surgery scared her to death – especially brain surgery). As her disease progressed she wanted the surgery, but had waited just too long and it was no longer a viable option.

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CARING for the CARETAKER

Many of you know that Martha (MM) and myself have both been embroiled in care taking situations for loved ones for quite some time now. We do it out of love and a bit of obligation, but we do it well with compassion, patience and tolerance. To say that it is stressful is the WORLD’S GREATEST UNDERSTATEMENT.

Most evenings we spend a few minutes emailing back and forth commiserating over the days troubles and surprises. Often it makes us chuckle and laugh which by my standards is soooooooooooooo necessary to help US with the stress. For me, just knowing that my friend knows what I’m going through relieves a lot of stress and reminds me that there is always tomorrow. We’re both Virgos and about the same age so there are enough similarities that I honestly believe we think alike. I know I sometimes receive an email just after I have hit send on one to her which is a relief as I know we were in the same “place” at the same time. Many times we could have even written each other’s emails because our days were so similar.

These days the difference comes because I am now helping to care for an aunt who has been placed in a care home while I’m also caring for her husband in their home who had triple bypass surgery and Martha is caring for her mother in her mother’s home while taking care of her family in her own home. We are both basically caring for 2 homes, but I can walk away from my aunt at the end of the day and know that there are at least 2 caregivers on staff for the night in the event my aunt needs help. This should bring relief. Instead it brings grief. Many times MUCH grief.

We have all heard about the horror stories in the news of abuse by caregivers to the elderly and infirm. For every story we have heard I guarantee you there are a hundred times more stories we haven’t heard. My aunt has been complaining for some time about the manager of the house she lives in as well as one of the nighttime aides. Many times we were inclined to believe much of it to be exaggeration. There are so many examples to choose from, but right now many of those cannot be spoken of while resolutions are pending.

Most of the residents of the home are there through guardianship and don’t have many visitors and while I have no actual proof, I believe that the “manager” (and boy do I use that term loosely) does not like family around because she can’t do things her way and in her time. She’s loud, rude and downright mean. She treats family members like they work for her and demands “respect” in “her facility”. Yep, you heard me right! This though is yet another story.

The man that owns the house is going through financial difficulties and has cut back on many things, one of which is the cook. The manager of the house is now doing all the cooking (well supposedly, but that’s another story). She cooks by her terms “Louisiana style”. From what I can tell, “Louisiana” style is a euphemism for lazy. The food is now being served with all the bones and gristle. My aunt is sight impaired and has severe dyskinesia, involuntary muscle movements, that makes her dexterity difficult. She cannot cut meat from a bone or detect it in a bowl of soup or stew. There is a serious choking hazard here. Personally I see not removing the bones before serving it to patients as pure laziness and neglect.

Martha and I of all people do understand how difficult this type of work can be physically and emotionally. But, I personally believe that anyone entering a paid position caring for patients should have a patience and tolerance that is reflected by their words and actions as well as the necessary knowledge of the disease(s) to understand the nature of the symptoms and side affects. If they cannot offer any one of those criteria then perhaps they should be looking for different work. If they cannot or will not follow the prescribed protocol for caring for patients as I suspect is the case in certain instances with my aunt (i.e. removing her night time meds without consulting the Dr.) then they should not be in this position either.

I know my horror stories have left Martha feeling a little queasy about getting her mother into an assisted living situation. But the moral, yes there is a moral! is that the family needs to stay involved, ask questions and not be afraid to follow through with governing agencies as we are doing now concerning my aunt and her care.

The biggest moral is that the caretaker MUST take care of themselves or they are of no good to anyone! The caretaker being stressed only creates stress in the patient that becomes a vicious cycle.

Now for something fun. The holidays are coming much faster than many of us would like so I offer you this easy and fun recipe that will thrill the kids for Christmas.

My great aunt who I only got to see a couple times a year used to make these every year special for me and I would wait out on the front steps for her to arrive just to see them and know they were there. Oh and her too! She always made them soooooooooo pretty and perfect!

HOLIDAY WREATHS

(these are better when they are made a few days ahead)

30 large marshmallows (or 1 jar marshmallow cream)
1/2 cup butter
1 teaspoon vanilla
2 teaspoon green food color
3 1/2 cups cornflakes
Red Hots

Combine marshmallows, butter, vanilla and food color in top of double boiler. Heat and stir frequently until well blended.
Gradually stir in cornflakes until well blended.
Drop onto wax paper and arrange into wreath shapes. I plop them onto the wax paper and then push out from the center to form the wreaths.
Decorate with red hots.
Let cool.
If your house is warm – chill in refrigerator until set.

5 stages of acceptance is all relative…to how you CHOOSE to deal with them…

Hi, Tamy here from OUR KrAzY kitchen, Always Eat On the Good China, 3 Sides of Crazy where life hasn’t been normal in quite some time and Tackle it Tuesday on Saturday here at The Motivation Station.

Martha talked about the stages of change on Wednesday. I swear we are on the same page as I was already writing about the stages of grief and acceptance.

One of the things that we all have in common here at The Motivation Station and in life is that nothing ever stays the same and we are always presented with something new to learn to conquer.

My ex-husband used to ALWAYS say, “I HATE change, quit changing everything.” Most people do hate change, but wake up people, change is inevitable. It’s called life and it is ever changing. When I was young I’d say, “but it’s not fair”. My dad’s favorite response was, “where is it written that life is fair? Fix it or learn to adapt to it and move on.” I do believe that is where I learned my positive attitude. It really is easier to adapt and be happy, try to see the positive in any given situation than it is to moan about it and be miserable. I miss my dad. He’s been gone 17 years now, but I try to remember his little one liners and the happy times. They always make me smile through my tears.

Anyway, I believe life is all about change and that learning to cope with it as it happens will help you through life. I believe in Murphy’s Law, the Domino Effect, Payback’s a Bitch, and Karma. I also believe that Pay It Forward and living by the Golden Rule go a long way to keep the former from happening to begin with. I believe everything happens for a reason and that life is one big adventure.

Now despite these beliefs this brings me to my current situation, my aunt Sharon who is also my godmother and was a great role model in my life. She has end stage Parkinsons disease and I am currently living with my uncle to try and help.

Parkinson’s disease (also known as Parkinson’s, Parkinson disease or PD) is a degenerative disorder of the central nervous system that often impairs the sufferer’s motor skills, speech, and other functions. Parkinson’s disease belongs to a group of conditions called movement disorders. It is characterized by muscle rigidity, tremor, a slowing of physical movement (bradykinesia) and a loss of physical movement (akinesia) in extreme cases. The primary symptoms are the results of decreased stimulation of the motor cortex by the basal ganglia, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the brain (specifically the substantia nigra). Secondary symptoms may include high level cognitive dysfunction and subtle language problems. PD is both chronic and progressive. PD is the most common cause of chronic progressive parkinsonism, a term which refers to the syndrome of tremor, rigidity, bradykinesia and postural instability. PD is also called “primary parkinsonism” or “idiopathic PD” (classically meaning having no known cause). While many forms of parkinsonism are idiopathic, “secondary” cases may result from toxicity most notably of drugs, head trauma, or other medical disorders. The term Parkinsonism is used for symptoms of tremor, stiffness, and slowing of movement caused by loss of dopamine. It is possible for a patient to be initially diagnosed with Parkinson’s disease but then to develop additional features, requiring revision of the diagnosis.

So knowing all this about how and what I believe about life, the type of illness she has and the fact that I too have a chronic illness* that does at times limit my abilities, I have trouble understanding where my aunt, the god fearing, rock to many in life, fun, positive, adaptable woman went. At one time she was a candidate for the brain surgery, but refused it. She now says she wants it, but the window has closed on that opportunity. Personally I would have jumped at that chance if for no other reason than I wouldn’t want my family to have to wait on me hand and foot 24/7. After 20 years her care was killing my uncle. Long story short she is now in assisted living, placed there by the state because she refused to do the things necessary to attend to her situation. I pray that I have the grace to make the “right” decision for my family as a whole if ever that situation presents itself to me.

She has serious control issues. She wants to manage this disease and make it conform to her narrow minded ways. She was presented just this week with new medications and a new regimen that should give her 50% more “good/on” times. If only she’d stay open minded enough to try it. Traditionally she’ll take one dose, say it doesn’t work and demand to be back on her “safety net” meds. The doctor has told her it is useless to make an appointment with her if she refuses to try what the doctor suggests. Her normal way of dealing with this is to change doctors until she finds one that agrees with her. Like I said there are serious control issues which brings me to my main point, The 5 stages of grief or acceptance. Knowing these and living by them can make any life easier, yours AND your families.

The 5 stages of grief or acceptance:

DENIAL – “this can’t be happening to me”. Not accepting or even acknowledging the loss.

ANGER – “why me?”, feelings of wanting to fight back or get even with spouse of divorce, for death, anger at the deceased, blaming them for leaving.
BARGAINING – bargaining often takes place before the loss. Attempting to make deals with the spouse who is leaving, or attempting to make deals with God to stop or change the loss. Begging, wishing, praying for them to come back.

DEPRESSION – overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning loss of person as well as the hopes, dreams and plans for the future. Feeling lack of control, feeling numb. Perhaps feeling suicidal.

ACCEPTANCE – there is a difference between resignation and acceptance. You have to accept the change or loss, not just try to bear it quietly. Realization that it takes two to make or break a marriage. Realization that the person is gone (in death) that it is not their fault, they didn’t leave you on purpose. (even in cases of suicide, often the deceased person, was not in their right frame of mind) Finding the good that can come out of the pain of loss, finding comfort and healing. Our goals should turn toward personal growth.

Get help. You will survive. You will heal (at least emotionally), even if you cannot believe that now, just know that it is true. To feel pain after loss (loss can also be a chronic illness or even a situation where we do not have control) is normal. It proves that we are alive, human. But we can’t stop living. We have to become stronger. Helping others through something we have experienced is a wonderful way to facilitate our healing and bring good out of something tragic.

*I have Systemic Lupus, but as my Rheumatologist is proud of saying, “you’d never know it, because I refuse to let it show.” I belief that is my cross to bare/bear and I refuse to let it affect my life when I can. Because of that attitude though many people, family members included tend to say you look fine so you must be fine and they heap more and more on my plate to deal with as the family caretaker, sometimes for both mine and hubby’s families. Still don’t know where I got that job, but am trying to empty that plate!

SOMETHING FOR EVERYONE

As many of you know I have spent the last 7 1/2 months helping out various family members around the country. First it was my elderly in-laws who begged us to come help them sell everything including the house and move them closer to family (we all know how that went – FIL is still trying to assign sentimental prices to everything in sight) and now it is my aunt & uncle. My aunt has end stage Parkinsons disease, such a sad disease. My aunt is extremely artistic and a beautiful painter – or at least she was. The Dyskinesia from the Parkinsons disease has robbed her of that ability.

My uncle recently saw the Oprah episode on hoaders and has decided that my aunt is one. Trust me, she isn’t. I once worked for a real estate company as a stager for homes and they would send me in to work on homes that were similar to those on the Oprah show – those were horrible. So ask yourself, what is my (your) happy medium on the stuff I’ve (you’ve) accumulated? My theory? If you have a place for each item and it’s in its place, you’re NOT a pack rat or a hoarder. I do offer you the definitions below.

She does have a LARGE collection of art supplies and empty tins for storing those items in, but in her defense men do think in simpler terms and this is just a meeting of the minds discussion. And in his defense they should be getting rid of most of this as she is now in a assisted living home and will not be able to use these items again. Donating them to the church or a school while they are still usable would be best, but can’t be forced. I pray that I will have more grace regarding these type of decisions if I reach that point and give up things more willingly, but none of us can ever be in one another’s shoes and truly know what we would do.

PACK RAT

~~Also called trade rat. a large, bushy-tailed rodent, Neotoma cinerea, of North America, noted for carrying off small articles to store in its nest.~~
A person who collects, saves, or hoards useless small items or an old prospector or guide.

HOARD

a supply or accumulation that is hidden or carefully guarded for preservation, future use, etc…
to accumulate money, food, or the like, in a hidden or carefully guarded place for preservation, future use, etc…

NOW FOR A LIGHTER TOPIC:JELL-O TRICKS

I think most everyone knows this trick by now, but it always amazes me how much better it makes a bowl of Jell-O so I thought it was worth mentioning again.Around our house we usually put canned fruit (peaches or pears usually) in the Jell-O for a little bit of extra OOMPH! When you drain those canned fruits, use a sieve and drain them into the measuring cup for the cold water first. Then just add enough water to bring the level to where you need it. I usually get about 1 1/4 cup of fruit juice. Doing this will make for a better, more substantial flavor to any Jell-O.

Just after I pour in the Jell-o I use a small salad fork to stir up the fruit in each bowl. The fruit is usually well distributed in the Jell-O.

We also don’t like the film that forms on the top. And I hated trying to stack all the bowls in the refrigerator, so I started using my Pampered Chef prep bowls for making Jell-O. Once you’ve made it, put the lids on and you can easily stack them in the frig.

If I keep this made, we both tend to eat this at night when the munchies strike and stay away from the chips and ice cream.

Loving others brings great joy!

As for my family, I’m preparing healthier meals and trying to make time and room for more relaxing meals so we have more “quality” time. This weekend I’m preparing a special Valentine’s Breakfast in Bed for hubby and then a picnic on the beach with dinner later at his favorite seafood restaurant, the Sea Chest on Friday night. We don’t go out on Valentine’s Day – too busy, too commercial and way too expensive. We always pick a day right around it and call it our own.

Like Martha (we really feed off of each other – must be those Virgo qualities) I also have a new food blog, Always Eat on the Good China – it’s all about the food, all the time. Come on by!

For my pets, we’re taking longer and more walks each day and getting plenty of play time at the dog park. My fur children are so much fun and so loving it hardly feels like work to take care of them. I’m also taking better care of myself with diet and exercise. When I do that, I’m more able to be the fun loving playful person they need me to be.

Many of you will remember that I’m still in transition until my house sells. We’re staying at the family lake house which in reality is 3 houses. So for others, I’m doing the minor repairs, drain clean outs, spring cleaning, yard clean-up, etc… around those places starting to get ready for the big family Memorial Day blowout.

We’re remote and too far from town right now, but as we get more settled I want to start volunteering for a local food bank and do some habitat for humanity work in a neighboring community.

Life as a caregiver…

We moved in with my in-laws about 3 months ago to care for them and help them stay in their own home. FIL just turned 88 and MIL will soon be 90. FIL has back problems and was caring for MIL alone. MIL has Alzheimers as well as physical difficulties with asthma, sinus and shoulder problems that are now complicated by the lack of movement and muscles beginning to atrophy. Those physical problems are accentuated by the Alzheimer’s symptoms and a sheer massive stubborn streak. After all, at almost 90 shouldn’t she be able to do what she wants , eat what she wants and say what she wants? Normally I’d agree, but after 3 months as a caregiver I am beginning to disagree…

To begin with eating what she wants creates digestive issues that are a burden to the caregiver. I’m trying to be diplomatic here, but it is what it is and like a baby who does not know any better as to what they can and cannot eat, a patient with Alzheimers has to be dietarily managed in the same fashion. Just remember what goes in eventually comes out one way or another.

As for doing what she wants, she doesn’t really do anything but sleep, get up and move to the living room, eat and drink and then back to bed at 3AMish. Sounds fairly innocuous? Right? WRONG! Once in the living room she reigns from her chair with the mouth a sailor would blush at. All the while watching NOTHING but old westerns again and again and again…, complaining that she is lonely and no one will watch TV with her (despite that we’ve seen this movie 3 times this week already with her) or she needs a drinking partner (don’t worry it’s way watered down) and fixating on the one thing she can remember. If she is feeling particularly lonely she whips out the cell phone and calls me, doesn’t matter what time of day or night or that I’m in the next room or that my cell minutes cost me money…

When you’re a 24/7 caretaker you HAVE to take time for yourself! That’s all there is to it. When I was away for Christmas, I realized that I hadn’t had a solid good night’s sleep in 64 days. I then had 4. Now it’s been another 9 nights of disrupted sleep and I’m feeling the pain. It’s not that she needs things necessarily during my sleep time, it’s that she is listening to the large screen projection TV with ceiling speakers turned up so the sound reverberates through the attic and rattles the windows. Many family members have offered up advice on dealing with the situation – all good and meaning, but until you have lived it 24/7, not just a few days at a time you can’t feel the impact of the progression of the disease.

This is my second time living “it” and there are so many similarities, but also quite a few differences. Without going into much detail, the differences have compounded the care. Things like thermostat levels, elder drama and sleep deprivation. There are many organizations that can help, but that too is a double edged sword. Many want to do an in home evaluation before you can hire them and with such a great demand for their services they can pick and choose their clients. They have been quite upfront about not accepting cantankerous or belligerent clients. If the patient won’t readily accept the help they won’t do it, but they will charge you the mandatory 2 hour rate for showing up. For us this is a problem as MIL needs help showering and such and REFUSES to do it 99% of the time. And while I believe this has become a health & safety issue for her and us, no one will intervene unless she were to be hospitalized. She also refuses to go to the doctor. I believe this is out of fear of learning the same information we already know, that she has Alzheimers. Without going to the doctor and getting new blood work they won’t adjust the medications and the disease wins again and progresses further. It becomes a vicious circle that has no end. At least not a good end.

All the literature from the Alzheimer’s association says you should always follow these 3 golden rules for living with an Alzheimer patient:

1) RE-DIRECT, RE-DIRECT, RE-DIRECT – If they become fixated on a specific thing try redirecting their attention to something positive and alluring for them.

2) TEACH YOURSELF TO LIE, LIE, LIE THERAPEUTICALLY – If they become fixated on a specific thing, agree and suggest at the same time that next Tuesday would be a good time to do it. They are normally appeased, at least for a bit. Also easier said than done when they appear to be having a lucid moment and you want to be honest with them. The emotional ties to the person can impede the caretaker big time. As can the ability of the patient to know what “buttons” to push in the caregiver. You know the ones attached to those emotional ties.

3) NEVER NEVER, NEVER ARGUE – Easier said than done when the patient is like a dog with a bone. FIL is the first to tell you this and the last to listen to his own advice. He gets so worked up trying to talk to her that they fight and then he leaves out of anger.

They say following these 3 rules are for the patient’s peace of mind. They don’t on that same sheet offer any advice for your peace of mind. You do need to find those outlets for yourself though.

FYI Alzheimers disease according to WIKIPEDIA can be broken down into 4 stages.

Pre-dementia – The first symptoms are often mistaken as related to aging or stress. Detailed neuropsychological testing can reveal mild cognitive difficulties up to eight years before a person fulfills the clinical criteria for diagnosis of AD. These early symptoms can affect the most complex daily living activities. The most noticeable deficit is memory loss, which shows up as difficulty in remembering recently learned facts and inability to acquire new information.

Subtle problems with the executive functions of attentiveness, planning, flexibility, and abstract thinking, or impairments in semantic memory (memory of meanings, and concept relationships), can also be symptomatic of the early stages of AD. Apathy can be observed at this stage, and remains the most persistent neuropsychiatric symptom throughout the course of the disease. The preclinical stage of the disease has also been termed mild cognitive impairment, but whether this term corresponds to a different diagnostic stage or identifies the first step of AD is a matter of dispute.

Early dementia – In people with AD the increasing impairment of learning and memory eventually leads to a definitive diagnosis. In a small portion of them, difficulties with language, executive functions, perception (agnosia), or execution of movements (apraxia) are more prominent than memory problems. AD does not affect all memory capacities equally. Older memories of the person’s life (episodic memory), facts learned (semantic memory), and implicit memory (the memory of the body on how to do things, such as using a fork to eat) are affected to a lesser degree than new facts or memories.

Language problems are mainly characterised by a shrinking vocabulary and decreased word fluency, which lead to a general impoverishment of oral and written language. In this stage, the person with Alzheimer’s is usually capable of adequately communicating basic ideas. While performing fine motor tasks such as writing, drawing or dressing, certain movement coordination and planning difficulties (apraxia) may be present but they are commonly unnoticed. As the disease progresses, people with AD can often continue to perform many tasks independently, but may need assistance or supervision with the most cognitively demanding activities.

Moderate dementia – Progressive deterioration eventually hinders independence; with subjects being unable to perform most common activities of daily living. Speech difficulties become evident due to an inability to recall vocabulary, which leads to frequent incorrect word substitutions (paraphasias). Reading and writing skills are also progressively lost. Complex motor sequences become less coordinated as time passes and AD progresses, so the risk of falling increases. During this phase, memory problems worsen, and the person may fail to recognize close relatives.Long-term memory, which was previously intact, becomes impaired.

Behavioural and neuropsychiatric changes become more prevalent. Common manifestations are wandering, irritability and labile affect, leading to crying, outbursts of unpremeditated aggression, or resistance to caregiving. Sundowning can also appear. Approximately 30% of patients develop illusionary misidentifications and other delusional symptoms. Subjects also lose insight of their disease process and limitations (Anosognosia). Urinary incontinence can develop. These symptoms create stress for relatives and caretakers, which can be reduced by moving the person from home care to other long-term care facilities.

Advanced dementia – During this last stage of AD, the patient is completely dependent upon caregivers. Language is reduced to simple phrases or even single words, eventually leading to complete loss of speech.Despite the loss of verbal language abilities, patients can often understand and return emotional signals. Although aggressiveness can still be present, extreme apathy and exhaustion are much more common results. Patients will ultimately not be able to perform even the most simple tasks without assistance. Muscle mass and mobility deteriorate to the point where they are bedridden, and they lose the ability to feed themselves. AD is a terminal illness with the cause of death typically being an external factor such as infection of pressure ulcers or pneumonia, not by the disease itself.

THE ELEPHANT IN THE ROOM..

When you google dementia this is what you get:

Dementia is a loss of brain function that occurs with certain diseases.