Alzheimer's Attack: Coping as Family & Nurse
Alzheimer's Disease can devastate caregivers. Being a nurse can help in some ways but make it more difficult in others. In this article read about one nurse's experience caring for her mother.
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.
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.
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.
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 EastridgeLast edit by Joe V on Oct 20, '17
Joy has been a Parish Nurse at her congregation for over 10 years. She enjoys cooking, walking her active dog and playing with her grand baby in her spare time.
Joined Jan '15; Posts: 265; Likes: 856.Mar 26, '16Alzheimer's disease is particularly cruel because it steals the personality and mind of the person you knew for so many years. And it is more tragic because (at least in my mother's case) I could sometimes look into her eyes and see she was still there, but couldn't express herself, and other times "no one was home." Some decisions are easier (DNR, no feeding tube) as a nurse, but it can be hard if not everyone else agrees, but at least with the knowledge of the inevitable end of the disease process you can avoid the guilt. We can only hope for a cure someday.Mar 26, '16I read this with great interest as I am a Parish Nurse and also the daughter of someone with dementia. I have found that I am much better at handling my mom's dementia since I have become a parish nurse. Prior to becoming a parish nurse, 2 years ago, I had been a staff nurse for my entire career. The stress of being a staff nurse, didn't help my thoughts toward my mom and her illness. As a family, we are all on the same page but we all have our own issues with guilt. My mom is healthy except for her mind. She no longer walks, but that is probably related to a car accident she and my dad were in 8 years ago. My dad died as a result of the accident.
The hardest thing my family deals with now, is the care my mom doesn't receive at her nursing home. She looks like mom, but all of her teeth have begun to rot. I took her to the dentist until it was no longer possible. Now 4 years later, the nursing home is starting dental care, too late for mom. Mom usually remembers us, her kids. But she is living in a wold with her mom and pop and aunts and uncles that are long gone.
We struggle as we are not overly happy with the nursing home that she is in, but we haven't agreed on a better one. There really aren't many great choices. We are not sure that moving her at this point is the best thing either. I try very hard to be an advocate for mom, she is fed and is safe. It is just the little things, like making sure her hair gets set once per week and a perm when she needs it. That helps her look like mom to us.
My sister summed it up well yesterday when a staff member suggested she redirect my mom from what ever she was doing. It was suggested to ask her about her career. My sister responded, being my mom was her career. I know this has drug on, but it is good to vent to others that have some understanding. We have done what we think is the best and can't change the past.Mar 26, '16jrbl77, that is part of what we went through too. My sister wanted our mom close to her, which took her away from where she had lived all her life and all her friends and my brother and myself, to two hours away. As a healthcare provider, the nursing home was inadequate, but she was used to it, and I felt putting her in a new place would only worsen her confusion, so I settled for letting the DON know about specific things that I could not deal with and put up with the rest. I totally feel for you, as I have been where you are. The other part of it is the hereditary issue, as my grandmother had Alzheimer's and my mom also died of it, so I am (unfortunately) very aware of what my future is.Mar 26, '16This is only the tip of the iceberg. My boyfriend and I were his mothers full time 24/7 caregivers until she passed last July. The isolation and utter exhaustion of the caregiver is health destroying. I was doing my nursing prereqs at the same time, and in the last year and half we didn't have one day or night away. 3 other siblings refused to visit, call or help in anyway, but boy, they sure swooped in when she was unconscious in the active dying process...a 6 day heart-rending ordeal of us being shoved out of the way so they could all beat their chests and nash their teeth. As soon as she passed, they turned on us like ravenous vultures. Stole everything they could get their hands on, threw us out of the house Mom wanted us to stay in, and highjacked the funeral guests away from the reception we had prepared. We are no contact with them now, and the only one that helped us died of a massive MI one month ago from the stress. The fact is that the healthcare system needs planning and a way to handle the massive influx of alz/dementia cases.. It is the #6 cause of death in the US and the assisted living/memory care homes are hit and miss for quality. $8000/month is out of the reach of almost all families, so it falls to the families to do the best they can, and then suffer again after the role is done. I do a lot of caregiver support for other caregivers and I can tell you, this is only going to get worse as the baby boomers continue to age. Age is the factor that increases risk and can't be modified by any interventions.Mar 26, '16study up on what ALZ is!! Plaque build up on the receptors and transmitters of brain tissue. The brain devolving (for lack of a better term) is going in reverse, back to childhood and thusly..baby, then death. With that said, ASK the ALZ patient, what ARE they confused about. Stop pampering them. Often the confusion can be easily solved, by asking. If they tell you, about someone that died 20 years ago, give me a rational answer. Be creative, and your ALZ Patient and their family will be able to cope.Mar 26, '16ALZ is growing, as kyou say with us aging boomers. Get used to it! Perhaps Giving the ALZ patient just needs answers. Get creative.Mar 26, '16It's a shame that your family was a bunch of jerks. The only saving grace for me was my brother and sister and I had sold everything to pay for my mom's care except some family jewelry that we divided among ourselves equally. We were civil, and still are. I have always felt sorry for families where some are greedy ***s.Mar 26, '16I did. I accessed every resource, read every book, did it all on my own. No help at all from Alz society or neurologists. I learned everything I could, wrote reports for neurologist, gp, cardiac dr. Jerk family never bothered to learn or read anything, then tried to throw me out of hospital when dr's wanted to know mom's status. Key phrase: Is that a part of stage 5? She was stage 7 and thought I was her mother.. cognitive age of a 3 year old. I have taken care of an Alz patient last week in clinical and advocated for her with physician and charge nurse and they both told me that my knowledge made the difference. So, I think I still want to go into gerontology, but MAN... its some hard s*** to deal with when it hits close to my heart.Mar 26, '16RoyHanson, I am guessing you are a nursing student (or I( will cut you the slack of presuming you are.) Alzheimer's patients do not know they are confused (ask them what they are confused about - REALLY?) They are in their own world. My mom thought my sister's husband was her husband - she did not believe she was confused. Give her a choice? REALLY? She would have slept with my sister's husband! She tried to go into other people's houses she thought were hers and given a choice she would have done that. Have you ever experienced working with people with Alzheimers on a regular basis (or ever?) My grandmother tried to drive with her Alzheimer's. Should she have had that choice? That's what she wanted to do..... I have been a nurse longer than I care to admit, and lived through two family members dying of Alzheimer's. Walk in my shoes before you tell me to learn about the disease. I know more about it than I ever wanted to.Mar 26, '16LadySolo... EXACTLY. No one has a CLUE until they walk in our shoes. If they did, they would run away screaming.Mar 26, '16"With that said, ASK the ALZ patient, what ARE they confused about. Stop pampering them. Often the confusion can be easily solved, by asking. If they tell you, about someone that died 20 years ago, give me a rational answer. Be creative, and your ALZ Patient and their family will be able to cope."
You cannot be serious with this post. You are completely ignorant of this disease. I've been working with this population for over 10 years.Mar 26, '16Thank 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.