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

Sometimes You Can Not Do It All.

January 28, 2008 by  
Filed under DIABETES

A Previous Post.

I wrote that I am caregiver to my mother and my autistic daughter. My mother moved into my home in August of 2007, so she has been here for around 5 months. Yes, it has been hard, taking care of three children, my mother, working from home, and trying to keep my relationship from falling apart.

When I wrote about caregivers, I mentioned taking time to think about long term facilities. In our case, that has become a topic of conversation. My mother has complications from her diabetes which mean she needs more medication than insulin alone. She has problems walking and with arthritis, her hands are becoming less mobile than before.

I’m Not Super Woman.

While I admit to being slightly relieved that she will be choosing a place to live where she can receive around the clock care, I cannot help but feel like a failure. I stay home all day, so why can’t I do everything that needs to be done? It is a losing battle to fight with myself over this, because I know this is the right decision.

So, how can you fight those feelings of failure? With my case, it is the acceptance that I really am not Super Woman, no matter how much I try to be. It is impossible to take care of three children, work, keep a healthy marriage, and take care of someone who is progressively becoming more disabled. Impossible to do this forever and keep my sanity. Acceptance and forgiving myself for not being perfect.

Have That Discussion.

If you find yourself in this type of situation, step back and take a breath. Do not delay in speaking with the person you are caring for, because waiting will only make the conversation more difficult. For me, it was being injured and falling short on everything that started the conversation. Sadly, it had to be my mother to point out that I was taking on too much.

Don’t let yourself begin to fall apart at the seams or try to do too much and end up hurt yourself. Take the time to talk to your loved one and discuss options that may better suit your mutual needs. A long term or assisted living facility may just be the answer to your prayers. You both will not need to worry about medications, room for medical equipment, or constant care.

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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.