Alzheimer's Attack: Coping as Family & Nurse

[jeastridge]

My friend's eyes' filled with tears as she told me the latest on her mom, "She keeps accusing me of stealing her things! Yesterday she said I came into her room and took her socks off while she was asleep." She smiled wanly. "It would be funny if it weren't so terribly sad." I gave her a hug and we finished filling up our coffee mugs at the restaurant's drink station.

I listened for the next thirty minutes while she went through they symptoms her mom was going through which included some of the more classic signs of early Alzheimer's: mood swings, misplacing things, unusual wandering at night. For the past year, Jennifer had been caring for her mom, first in separate households, but more recently she moved her mom into the guest room of her own apartment so she could keep an eye on her. Even though Jenn was a very competent and compassionate orthopedic nurse, this was completely different from what she had learned in school. Having her mother accuse her and be angry with her stirred up a deep sadness, one that acknowledged that the mom she had known all her life was slipping away, being gradually replaced by an unfamiliar lady that occupied the same physical space. It was unsettling and made her wonder out loud if she knew anything at all about Alzheimer's.

Having our loved ones experience any serious illness can make us question our own professionalism since we often feel that we should be able to cope with any sort of medical crisis. Alzheimer's or any type of dementia can be particularly trying since it usually involves a long term mental and physical decline that presents unique challenges to the caregiver. Jennifer outlined a few of those: caregiver exhaustion, depression and discouragement.

As a Parish Nurse, I work with people in an ongoing Caregiver Support Group. I encouraged Jenn to attend and also suggested some books she might read that would help her reframe her experience from the more familiar mastery that exists in being a professional nurse to the more vulnerable role of daughter and caregiver seeking answers and help on a long journey. I shared with her some of the more difficult trials we discussed in group.

Second Guessing Decisions

Members of the group express frustration with all the various options for care and with the sense that they are never sure of having done the right thing. An example is the decision not to do a tube feeding. They talk about how that is the easy part-it is harder making decisions about changing food texture, how and when to hand feed their loved one, food refusal and how to react when choking becomes more frequent as the disease progresses.

Sleep Disturbances

Missing one night of sleep occasionally can be disruptive, but OK. But having every night disturbed leads to excessive fatigue, lack of ability to cope with daytime duties, and depression-for caregivers and for their care recipients. Working with medical professionals to find helpful routines, drugs and respite care can be a partial solution, but chronic loss of sleep may be the #1 hazard of family caregiving.

Family Disunity

Sometimes people just don't agree on what to do. And very often one family member is left to do the lion's share of the work-bills, doctor's appointments, taxi service, advocacy. If other relatives participate, it can often be hard to coordinate and variety is not the spice of life for a person with memory issues.

Making Decisions About Treatment For Co-Morbidities

When a dementia patient has advanced heart disease, or their diabetes is out of control because they eat too much sugar, or their routine preventative medicine is due, or they need a joint replacement but rehab would be a real bear-these decisions get complicated. Deciding they are a DNR might be a first step, but there are lots of steps on the road between onset of memory loss and the time when the DNR decision goes into effect.

Guilt. Guilt.

If sleep deprivation is the #1 hazard of family caregiving, then guilt is the #1 feeling associated with it. Because caregiving is often so intense, decisions must be made and life set into a series of priorities. When finances enter the picture, options can be further limited. The caregiver may feel squeezed in a vice grip of life-stuck between spouse, children, grandchildren, work, time for self-renewal and worship, caring for their own physical bodies, and having some fun. Seeking to maintain a spiritual balance, a life-focus, can become the greatest challenge.

After a second cup of coffee and some time to vent, Jenn's eyes cleared up, her shoulders seemed to release some of the tension and she leaned back in the booth. "You know what's hilarious? Mom keeps loosing her underwear! I can't find it in her drawers or in the trash can. Where do you suppose she is stashing it?" We both shook our heads in unison and laughed until we cried.

Joy Eastridge

[nickster26]

Thank you for sharing this! I care for my grandmother with Alzheimer's and it is refreshing to hear from people who are going through or have gone through this terrible disease. As a new RN, I feel that a lot of my education has allowed me to give her the proper care she needs and better manage her care. However, it sometimes feels so overwhelming, I feel that my moods are just as labile as hers sometimes. At the end of the day though, seeing her smile is what makes me want to do everything I can to give her the highest quality of life. And to Roy Hanson, how dare you tell people who are sharing their person experiences with Alzheimer's to "Study Up" and "Not Pamper them". Like LadySolo mentioned, trying telling someone who has NO IDEA that they are confused and have ALZ that "this apartment is the same apartment that you have been living in for the past 30 years"... it doesn't get more direct than that but yet each time you get the same answer, "Why are you doing this to me, I want to go home!" You don't have the first clue what Alz is, I don't care wether your an RN or an MD. My grandmother soothed me when I was ill, raised me when both parents were away at work, and loved me and my brother uncondonitionally... if it weren't for financial constraints that restrict us she would be getting the best care possible. For now I can only do the best I can with what I have and "pamper" and love her the way she "pampered" and loved me.

[jeastridge, BSN, RN]

nickster26 said:

Thank you for sharing this! I care for my grandmother with Alzheimer's and it is refreshing to hear from people who are going through or have gone through this terrible disease. As a new RN, I feel that a lot of my education has allowed me to give her the proper care she needs and better manage her care. However, it sometimes feels so overwhelming, I feel that my moods are just as labile as hers sometimes. At the end of the day though, seeing her smile is what makes me want to do everything I can to give her the highest quality of life. And to Roy Hanson, how dare you tell people who are sharing their person experiences with Alzheimer's to "Study Up" and "Not Pamper them". Like LadySolo mentioned, trying telling someone who has NO IDEA that they are confused and have ALZ that "this apartment is the same apartment that you have been living in for the past 30 years"... it doesn't get more direct than that but yet each time you get the same answer, "Why are you doing this to me, I want to go home!" You don't have the first clue what Alz is, I don't care wether your an RN or an MD. My grandmother soothed me when I was ill, raised me when both parents were away at work, and loved me and my brother uncondonitionally... if it weren't for financial constraints that restrict us she would be getting the best care possible. For now I can only do the best I can with what I have and "pamper" and love her the way she "pampered" and loved me.

Dear Nickster26, It sounds like you are a very loving and caring granddaughter who is doing the best you can under very difficult circumstances. You bring up a good point, that every case of Alzheimer's/Dementia is different, so that no one approach fits all. While there are some general principles that apply, individualized care if needed with each person affected. The losses even vary from day to day, making it even harder for the caregiver to know how to proceed. Joy

[Roy Hanson]

aw babygirl! you are acting as that! Your post about being ignorant about Alz is rude. Open your eyes AND your mind. ALZ is a cruel progressive/degrading disease. At this point, you need to educate yourself beyond the internet. There are way to cope, but like most families, ignorance is bliss and sometimes profitable.

[GrammyCat]

Roy Hanson said:

aw babygirl! you are acting as that! Your post about being ignorant about Alz is rude. Open your eyes AND your mind. ALZ is a cruel progressive/degrading disease. At this point, you need to educate yourself beyond the internet. There are way to cope, but like most families, ignorance is bliss and sometimes profitable.

Are you kidding me, Roy Hanson? Did you not read that we have lived through this as caregivers and nurses???? Your responses are RUDE, dismissive and ignorant. So, what is YOUR experience with Alzheimer's, and how many of your 25 years have you taken CARE of the Alz pt ? How did your bad attitude work for that pt? What did you do for them? My guess is that you just treated them as an annoyance or ignored them? It sounds like YOU need to get an education. Go volunteer. I dare you.

[LadysSolo]

Or RoyHanson, are you a troll enjoying baiting people who actually know something about the topic?

[BSN-to-MSN, ADN, BSN, RN]

Perhaps RoyHanson is giving us the look from the inside of the mind with ALZ, and is a 92 y.o. person... We wouldn't know.

[jhug]

Having come across this article recently I wanted to pass it along. The potential treatment is probably still several years off, but it's something to keep track of, especially if your loved one is still in the early stages. At least there is a small glimmer of hope on the horizon as the baby boomers all come of age. I hope for the sake of those here coping with Alzheimer's in their family, that this gets fast-tracked to market swiftly if the trials go well.

New Alzheimer’s treatment fully restores memory function - ScienceAlert

[nickster26]

Your negativity and disrespect is so not welcomed here!! Move on and stop talking about issues that you have no knowledge or experience about. I am making a conscious effort to not stoop down to your level and so should everyone else here. You don't deserve our time or acknowledgement.

[walkingon, CNA, LPN]

Ask the Alzheimer's patient what they're confused about?! Are you sure you're talking about the same disease that's the topic of this thread?