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.
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.
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!