Dementia, Alzheimer’s, the Elderly and Sex (part 3)

July 2, 2008 by  
Filed under ALZHEIMER'S

Okay, this is my last post on the whole dementia, Alzheimer’s and sex subject. But this subject really has me thinking about the rights of people with dementia.

Is a 14 or 15 year old any more able to give consent than a person with dementia?

Is it actually possible for caregivers to discuss this issue and come to a conclusion when the loved one is in the earlier stages of Alzheimer’s disease?

Should long term care facilities/nursing homes make provision for spouses or “friends” to have sexual relations?

How does the dynamic change is one person has dementia and the other does not? Does it matter if the affected person is a male or female?

Should families or facilities make arrangements for safe/clean sexual encounters between residents?

At what point, if any, should facility staff/management get involved in relationship between patients?

Was there a relationship prior to the dementia (as in the case of a spouse or a person who entered the facility for something other than dementia, but now has dementia)

What part do the persons past morals and values play in the decision?

Should the caregiver’s morals be considered?

I suppose all of these questions mean that it’s an area that must be carefully studied, that there are as many answers as there are individual situations. In many religious traditions, sex outside of marriage is forbidden. The “rule” is usually enforced for the young or for divorcees. Does it actually apply to the elderly as well?

Please, I’ll give you a virtual penny for your thoughts. What’s your opinion?

Fight (with) the Power-Power of Attorney

April 21, 2008 by  
Filed under ALZHEIMER'S

For the next couple of days, we’ll take a look at some of the legal issues facing caregivers and Alzheimer’s patients.

It is an incontestable fact that Alzheimer’s will ultimately render the one who has it, unable to handle day to day, legal and health care decisions.  It’s not something that caregivers or Alzheimer’s patients look forward to discussing, but it is absolutely necessary.

A few weeks ago, I did a series of posts about the stages of Alzheimer’s disease and how caregivers should respond to those stages.  As the disease progresses it will become apparent that your loved one needs more and more help; it is imperative that you (or someone close to the situation) get Power of Attorney (POA), so that the family is able to make life, legal and health care decisions for your loved one.

According to the Attorney General of the State of New York, “A Power of Attorney is a legal instrument that is used to delegate legal authority to another. The person who signs (executes) a Power of Attorney is called the Principal. The power of Attorney gives legal authority to another person (called an Agent or Attorney-in-Fact) to make property, financial and other legal decisions for the Principal.”

There are several types of power of attorney, in most cases, the caregiver wants to get durable power of attorney as it enables the caregiver (agent) to act on the loved one’s (principal’s) behalf after the principal is unable to do so because of health or other reason.  You can get the forms from an attorney or from the internet.  It’s not complicated and well worth your minimal time and financial investment.

I can’t stress how important this is.  I have had to show proof of my authority to act on my mom’s behalf for something as simple as handling an electric bill and as complex as admitting her into a long term care facility.

In order for you as a caregiver to act in the best interest of your loved one, you have to have the authority to do so.  The Power of Attorney provides you with that authority. 

Just a word of caution, the Durable Power of Attorney gives so much power and authority that, in the wrong hands it can be terribly misused.  The story of Frank Punito makes the point well.  So, be sure that the person who has Power of Attorney has your loved one’s best interest at heart.

Please, don’t be scared off by the negative possibilities.  It’s the right thing to do, so get power of attorney, NOW, while your loved one can sign and agree that he or she wants you to handle the affairs.

Stage 7 Alzheimer’s Disease – Caregiver Response

April 3, 2008 by  
Filed under ALZHEIMER'S

I have been sort of avoiding writing this post.  As I have described each stage of Alzheimer’s disease, I can remember my mother and how she declined through the stages.  I can remember the anxiety and fear that each stage brought (for me).  I can remember feeling sick in my gut as I realized that she was coming to the end.  I recall wondering, how will it actually happen?  How long does this stage last?  How will she actually die and more importantly, how will I possibly live without my favorite girl in the whole wide world.  Well, that answer is for another post at another time, but for now, I have to talk with you about stage seven, the final stage of Alzheimer’s disease.  I have to tell you what will happen while your loved one still lives.  To say that stage seven is difficult is like saying that gas prices are a little high, it’s a gross understatement.

Stage 7

Your loved one won’t do much wandering in this stage because, in the early part of this stage, she won’t be able to walk without assistance.  As time goes on, she won’t be able to walk at all.  Then she’ll lose the ability to sit without support.  She may not be able to hold her head up.  As these changes occur, you’ll notice that there is very little interaction with the outside world.  She will have gone from inappropriate responses to the world around her to no responses at all.  The muscles may get rigid and the reflexes are not working properly.  As this occurs, grandma may not smile anymore.  Her facial expression is blank for the most part.   Swallowing becomes very difficult, there may be lots of drooling and if there is speech, it’s unintelligible.  By this time, your loved one is experiencing urinary and fecal incontinence and is totally dependent on someone else for care.

Caregiver Response

Totally dependent.  Let those words sink in.  At this stage of the battle against Alzheimer’s disease, your loved one needs complete, round the clock care for everything.  If it happens to or for your loved one, it’s because you or someone else is doing it.  Let me be clear here.  You or your designee will be responsible for feeding, bathing, dressing, diaper changes and grooming.  Your loved one has officially gone from your parent, grandparent, aunt, uncle to your baby and it’s painful.  So, take time to grieve the loss that is occurring. 

If your loved one is still at home, you might be considering a long term care facility.  On the other hand, you might be digging in thinking, “I’ve made it this long, and I’m seeing it through to the end.”  Don’t dig in your heels, “just because.”  Remember, you are in a position of trust and honor.  So, do what is BEST for all involved.  Maybe that’s keeping grandma at home, maybe it isn’t.  Just be willing to consider your options.  There is value in transferring the day to day work of caregiving to someone else, so that you can spend your time just being there with your loved one.  It may seem as if he or she has not a clue what is going on, but who knows for sure?

Think about the hard question. If grandma has a heart attack or needs surgery for a blood clot or something of the sort, what are you going to do?  Is there an advance directive in place?  What about a Do Not Resuscitate (DNR) order?  If not, you will more than likely have to determine how much care and intervention you want to do in case of a medical emergency.  I would not DARE tell you what to do; I will say that it’s better to consider your options before you have to make such a decision.

Finally, TOUCH your loved one. She may not be able to understand your words. He may not know who you are, but many people are comforted by a gentle and loving touch. Brush her hair, or give her a back rub.  Stroke his forehead or hold his hand.  Remember the good times and enjoy the time you have now.

Tomorrow:  Caregiver’s Corner!

Stage 6 Alzheimer’s Disease-Caregiver Response

April 2, 2008 by  
Filed under ALZHEIMER'S

I started talking about the stages of Alzheimer’s disease on Last Thursday. In that post, I covered stages one and two, on Monday, I talked about stages three and four.  On Tuesday, I covered stage five. That means we are up to stage 6.  Before I get into the details, I want to say again, in case you are just tuning in, that there is a plethora of information on the stages of Alzheimer’s disease.  Most organizations, websites and blogs that talk about Alzheimer’s have sections on the stages of the disease.  It is my intent not just to give you information on the stages; but to help you to prepare by suggesting ways that you, as a caregiver, should respond to the particular stage your loved one is currently facing.

Stage 6

If you haven’t gotten really down in the dumps as yet, you probably will at this stage in the battle against Alzheimer’s disease.  I don’t mean to be negative or insensitive.  It is just very difficult to watch your loved one slip away, while his or her body is still in tact.  I mean, if grandpa has his leg amputated, it’s a horrible thing, but he is still grandpa, just without a leg.  By this stage of Alzheimer’s disease though, in addition to very significant memory loss, personality changes may also occur.  If grandpa was stubborn and set in his ways before, you may have to become very creative to get him to cooperate at this stage.  Kathy from notes, “We have a chalkboard that I write the day and date on for my dad, and when I need to change the schedule, I just change the date. Yesterday, I put out last Tuesday’s paper and wrote last Tuesday’s date on the board. Viola! Haircut on Monday – Victory!”

Your loved one may experience delusions, hallucinations, become very suspicious and engage in repetitive behaviors such as picking at lint on a sweater or tearing paper.  His sleep pattern may be way out of whack.  He’ll want to sleep during the day and wander throughout the night.  He’ll need assistance getting dressed and undressed and probably won’t be able to handle the individual tasks of going into the bathroom, using it, cleaning himself, disposing of the paper, flushing the toilet and washing his hands.  He’ll start to become incontinent and may even forget the name of his spouse, children or primary caregiver. He may eat more slowly and communicate less or speak gibberish at times.

Caregiver Response

You are now looking at ‘round the clock care.  Your loved one will certainly hurt himself or wander away if he is left unattended.  It is not wise to attempt to do this alone.  If you have not solicited help you really need to rally the friends and family, an outside agency, even some strangers! Do what you need to do, but get some help.  It will take more time to dress and care for grandpa, you might even have to feed him at times and if he is still going to the bathroom on his own, you will certainly have to provide reminders and some help with the process as well.  Someone other than grandpa will be completely responsible for his cleanliness, grooming, getting up, daily activities, eating and going to bed. At this stage, grandpa will not be able to do any of these tasks on his own.

You’ll begin to grieve even more. You have been all along, but it will be more pronounced as the days progress and you become the “adult” while your loved one becomes the child.  Get in a support group.  It will help to be able to talk about what you are experiencing with people who understand.  It is often around this time that families start thinking seriously (and painfully) of placing their loved ones in long-term care facilities.  It’s a very personal and difficult decision that should be weighed carefully.  If you allow yourself to feel, you’ll have bouts of seemingly unexplained sadness.  It’s natural.  You are losing someone you love and it’s becoming more and more obvious.

May I offer you a virtual “Penny for your thoughts?” Please share here or feel free to drop me private note

Tomorrow, Stage 7

Stage 5 Alzheimer’s Disease-Caregiver Response

April 1, 2008 by  
Filed under ALZHEIMER'S

Today is the third day that I’ve discussed the stages of Alzheimer’s disease.  People are very different and they all start from different “norms.”  For example, I have an excellent memory for phone numbers.  Someone else may have never been good at remembering numbers, so our norm from the beginning would be different.  That said, there are still benchmarks and tell tale signs that would signal the various stages of Alzheimer’s disease.

As stated previously, my goal is to give you the characteristics of each stage AND to let you know how you as a caregiver can respond to the things going on in that particular stage.

Stage 5

You will go from providing some assistance in daily activities to more sustained and consistent assistance.  For example, in stage 4 you may have started helping with finances and meal preparation. 

In this stage, stage 5, you will find that your loved one needs help with most daily activities.  For example, grandma may still know how to put her clothes on, but she may forget to take her pajamas off before she gets dressed.  She may put her bra on over her sweater or put her nightgown on OVER her clothes. It’s probably not safe for her to cook because she may put something inappropriate into the microwave or turn on the stove and forget it’s on.  There is also potential for a severe burn as she may not recall that the pot handle is hot.  She may not remember that she just poured boiling water into a cup and therefore attempt to drink it before it is at the correct temperature.  She spends much more time in the past than she does in the present, although she probably remembers close family and friends (most of the time). With regards to time and space, she may forget where she is, the date, time and or season.

Caregiver Response

At this stage, you will become much more involved in day to day care.  Your loved one will need help getting dressed properly and preparing meals.  If your loved one lives alone, you’ll have to consider moving her in with someone who can provide round the clock supervision because wandering and safety will become more and more of a concern.  If you haven’t already, you should consider adult day care programs and senior center activities.  These day programs will keep your loved one’s body and mind active, while providing appropriate supervision.  My mom attended adult day care for a few years. Transportation was provided and it was safe for her and provided an opportunity for me to run errands, work, care for my young son, take care of household duties and get ready for her return in the evening.

You should start to think seriously about the future.  As caregiving requires more time, will you bring in outside help? Consider an Alzheimer’s Care facility? Rally friends and family?

NOTE:  If you haven’t already gotten durable Power of Attorney (POA), it may be too late.  If your loved one can still be logical and make some decisions, you need to handle this matter RIGHT NOW.  Stage 6 will be too late for sure. There are other options, but they are more time consuming, more costly and much more involved than just getting the Power of Attorney.

Stages 3 and 4 Alzheimer’s Disease-Caregiver Response

March 31, 2008 by  
Filed under ALZHEIMER'S

Last week I talked about how to know if it’s Alzheimer’s disease and I ended the segment on Thursday with a discussion about stages one and two.  I promised that, for this week, I’d finish up the stages.

I thought it would be most helpful for you if I not only describe the stages, but also provide some information as to how, you as a caregiver, might prepare and respond in a particular stage. After all, as a caregiver, you want to know what is coming and how to deal with it.

Let’s just review quickly.  You can click on the link, Stages of Alzheimer’s-Caregiver’s Response to get more complete information.  But for now, you may remember that Stage one is really not a stage of Alzheimer’s, but rather a stage when no symptoms are present. Stage two there is very mild decline that may not be noticeable, except by the most astute observer.

For today, let’s talk about Stages three and four:

Stage 3-This is the stage where memory issues become much more obvious.  Even the friends and family members begin to notice changes.  The person may find it difficult to remember names, especially of people he or she hasn’t known for a long time.  If your loved one is still working or is involved in social activities like card playing, etc. associates may begin to notice that performance on the job or mental acuity in social settings is slipping.  You may also notice that planning or organizing tasks become more difficult.  Balancing the checkbook or following a recipe may take longer than before and may cause frustration.  Medical evaluation may or may not be able to confirm with a  high percentage of accuracy if the person has Alzheimer’s disease at this juncture.

Stage 4-I mentioned in an earlier post that although there are seven individual stages, the disease is also broken into larger categories.  This stage falls into the mild or early stage Alzheimer’s disease category.  It is characterized by obvious memory loss regarding current events and personal information, such as address, phone number and names of close family members.  By this stage, it’s tough for the affected person to plan a dinner party, pay bills, balance checkbook and keep tabs on person al finances. At this point, decline is obvious enough that friends and family members are sure that something is awry. Often, the disease can be diagnosed with a fairly high level of surety by this point.

Caregiver Response-At this stage in the game, as a caregiver, you need to swing into action.  If your loved one has not yet been evaluated; then make a doctor’s appointment and get that done right away.  You should also consider who will become the primary caregiver(s).  Getting Power of Attorney is very important so that you or someone is able to make important decisions on behalf of your loved one. Be sure to include health care responsibilities as well.  You will also want to have conversations with your loved one about taking over the finances, paying bills, etc.  Depending on the amount of assets your loved one has, you’ll want to see an elder law attorney to see how best to proceed to protect the assets of your loved one.  If your loved one will be on Medicare then you’ll need to complete the paperwork to get that process started.  In short, this is the time you will put systems in place to help you as the disease progresses.  Most of all though, try to understand how scary this is for your family member.  They have been living with the signs and not fully understanding what is happening for a long time now. Let them know that you will be there to help and support in any way you can. Allow them to express frustration and don’t take it personally.

Tomorrow, I’ll discuss stages five and six.

Stages of Alzheimer’s Disease – Caregiver Response

March 27, 2008 by  
Filed under ALZHEIMER'S

This post discusses Alzheimer’s Disease Stages One and Two 

I promised that I’d talk about stages, and in the meantime, I got a GREAT idea that I believe will be quite beneficial.  You and I both know that there are numerous places that you can get information about the STAGES of Alzheimer’s disease. As a caregiver, I really wanted to understand what was coming next, so those sites and resources definitely filled that need.  As time went on, though, I discovered that as much as I needed to understand the stage and what was coming next, I needed to know what that meant for me as a caregiver.  I wanted answers to questions such as, how would my role change as the stages progressed?  As my mom’s need for care increased, were there organizations I could look to for help with daily activities?  At what point should we consider adult day care and would there be a time that she would  no longer be “eligible” for adult day care?  What is assisted living and is it realistic for us to consider an Alzheimer’s care facility? Does everyone with Alzheimer’s eventually become incontinent?

So, what I propose to do is not just share the stages with you, but also help you to be prepared and armed to battle Alzheimer’s disease from stage one to stage seven.  The format will be as follows, I’ll describe the stage, provide links for more information and then give you pertinent information regarding your role as a caregiver. 

Today, let’s take a look at stages one and two.

Stage 1 is really a misnomer in the sense that it refers to a normal individual who has no memory issues.  I am not sure who fits into this category, certainly not those of us who are parents of toddlers and/or teens.  On a serious note, though, this is not a stage of disease, rather it is the stage BEFORE the disease.

Stage 2–Person has very mild decline that appears as a slight, but increasing lapse of memory; such as frequently misplacing keys and glasses.  The extremely close and observant friend or family member may notice.  At this stage, its easily shrugged off as stress, “senior moments,” or just plain old age.

Caregiver Response–At this stage there is usually not a “caregiver” per se, unless there is some other medical condition that requires it.  In most cases others are not aware that there is a problem.  The affected individual may feel something is wrong and either be adept at hiding it or just not able to pinpoint the problem.

Although there are seven stages, they are often broken into four larger categories such as mild or early stage, moderate or mid-stage, moderately severe or mid-stage and severe or late stage Alzheimer’s disease.

In the coming week, I’ll describe the remaining stages and provide a Caregiver Response for each stage, so that you will know what’s coming, how to prepare and how to respond so that you can provide the best care for your loved one.

In the meantime…Penny for your thoughts? Please feel free to comment specifically on this post, ask a general question or contact me privately at

Coming up tomorrow–Caregivers Corner

Alzheimer’s Disease and Incontinence

March 18, 2008 by  
Filed under ALZHEIMER'S

Yesterday, we talked about the fact that incontinence and Alzheimer’s disease are companions.

Today, I want us to investigate incontinence a little deeper. We’ll look at types of incontinence and some differences between men and women. Hopefully, we’ll help you to be able to ask the right questions and/or figure out if your loved one’s incontinence is temporary and due to some underlying medical issue, or if it’s the incontinence brought on as Alzheimer’s disease progresses.

Women are more likely than men to be incontinent. Chalk that up to pregnancy, the resulting childbirth, menopause, and the structure of the female urinary tract.

There are also several different types of incontinence. I’ll go through them quickly, just to give you an idea.

Stress–Leakage generally caused by coughing, exercising, laughing, sneezing. or some physical pressure on the internal abdominal area.

Urge–Urination begins at the same time the urge to go is felt. The bladder contracts for seemingly no reason. Can be brought on by the sound of water or even by the washing of impacted person’s hands.

Overflow–Usually caused by a physiological issue that causes the bladder to be full most of the time.

Functional–Caused by brain function issues, such as inability to carry out the steps necessary to go to to the bathroom when the urge is felt. Inability to translate the feeling into urge to use the bathroom, and/or deterioration of brain function.

A urologist or gynecologist can help to make the proper diagnosis. In the early stages, simply adjusting liquid intake or prompting affected person to use the bathroom may be helpful. You do want to rule out physiological issues if your loved one is in the earlier stages of Alzheimer’s disease. Even something as simple as a urinary tract infection can cause urinary incontinence.

Now, here’s the tricky part, getting your loved one to ACT NOW before it gets unsanitary and embarrassing for all involved. There is no easy way to approach the subject, but the smarter way is earlier rather than later. If you start talking about it while your loved one can still communicate fairly logically, it will be easier. If the affected one understands that she has Alzheimer’s disease, then that may take away a little of the resistance.

Explain that incontinence doesn’t make her any less of a person (mom, grandmother, sister, wife), it’s just an inconvenient part of Battling Alzheimer’s disease. Often, by the time the affected person is incontinent, he or she is in the later stages of the disease and it may just be a matter of selecting the best products and using them without the need for explanation or coaxing on your part.

Even still, you’ll need some information and guidance as to the products, how to use them properly and how to manage the process  so that it is clean and healthy for you and your loved one. That’s what we’ll talk about in the upcoming posts.

Until then, remember … Like I said in the post, “You gotta do what you gotta do….dealing with Incontinence.”  Everyone poops!

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NOTE: The contents in this blog are for informational purposes only, and should not be construed as medical advice, diagnosis, treatment or a substitute for professional care. Always seek the advice of your physician or other qualified health professional before making changes to any existing treatment or program. Some of the information presented in this blog may already be out of date.