Life as a caregiver...


We moved in with my in-laws about 3 months ago to care for them and help them stay in their own home. FIL just turned 88 and MIL will soon be 90. FIL has back problems and was caring for MIL alone. MIL has Alzheimers as well as physical difficulties with asthma, sinus and shoulder problems that are now complicated by the lack of movement and muscles beginning to atrophy. Those physical problems are accentuated by the Alzheimer's symptoms and a sheer massive stubborn streak. After all, at almost 90 shouldn't she be able to do what she wants , eat what she wants and say what she wants? Normally I'd agree, but after 3 months as a caregiver I am beginning to disagree...

To begin with eating what she wants creates digestive issues that are a burden to the caregiver. I'm trying to be diplomatic here, but it is what it is and like a baby who does not know any better as to what they can and cannot eat, a patient with Alzheimers has to be dietarily managed in the same fashion. Just remember what goes in eventually comes out one way or another.

As for doing what she wants, she doesn't really do anything but sleep, get up and move to the living room, eat and drink and then back to bed at
3AMish. Sounds fairly innocuous? Right? WRONG! Once in the living room she reigns from her chair with the mouth a sailor would blush at. All the while watching NOTHING but old westerns again and again and again..., complaining that she is lonely and no one will watch TV with her (despite that we've seen this movie 3 times this week already with her) or she needs a drinking partner (don't worry it's way watered down) and fixating on the one thing she can remember. If she is feeling particularly lonely she whips out the cell phone and calls me, doesn't matter what time of day or night or that I'm in the next room or that my cell minutes cost me money...



When you're a 24/7 caretaker you HAVE to take time for yourself! That's all there is to it. When I was away for Christmas, I realized that I hadn't had a solid good night's sleep in 64 days. I then had 4. Now it's been another 9 nights of disrupted sleep and I'm feeling the pain. It's not that she needs things necessarily during my sleep time, it's that she is listening to the large screen projection TV with ceiling speakers turned up so the sound reverberates through the attic and rattles the windows. Many family members have offered up advice on dealing with the situation - all good and meaning, but until you have lived it 24/7, not just a few days at a time you can't feel the impact of the progression of the disease.

This is my second time living "it" and there are so many similarities, but also quite a few differences. Without going into much detail, the differences have compounded the care. Things like thermostat levels, elder drama and sleep deprivation. There are many organizations that can help, but that too is a double edged sword. Many want to do an in home evaluation before you can hire them and with such a great demand for their services they can pick and choose their clients. They have been quite upfront about not accepting cantankerous or belligerent clients. If the patient won't readily accept the help they won't do it, but they will charge you the mandatory 2 hour rate for showing up. For us this is a problem as MIL needs help showering and such and REFUSES to do it 99% of the time. And while I believe this has become a health & safety issue for her and us, no one will intervene unless she were to be hospitalized. She also refuses to go to the doctor. I believe this is out of fear of learning the same information we already know, that she has Alzheimers. Without going to the doctor and getting new blood work they won't adjust the medications and the disease wins again and progresses further. It becomes a vicious circle that has no end. At least not a good end.

All the literature from the Alzheimer's association says you should always follow these 3 golden rules for living with an Alzheimer patient:

1) RE-DIRECT, RE-DIRECT, RE-DIRECT - If they become fixated on a specific thing try redirecting their attention to something positive and alluring for them.

2) TEACH YOURSELF TO LIE, LIE, LIE THERAPEUTICALLY - If they become fixated on a specific thing, agree and suggest at the same time that next Tuesday would be a good time to do it. They are normally appeased, at least for a bit. Also easier said than done when they appear to be having a lucid moment and you want to be honest with them. The emotional ties to the person can impede the caretaker big time. As can the ability of the patient to know what "buttons" to push in the caregiver. You know the ones attached to those emotional ties.

3) NEVER NEVER, NEVER ARGUE - Easier said than done when the patient is like a dog with a bone. FIL is the first to tell you this and the last to listen to his own advice. He gets so worked up trying to talk to her that they fight and then he leaves out of anger.

They say following these 3 rules are for the patient's peace of mind. They don't on that same sheet offer any advice for your peace of mind. You do need to find those outlets for yourself though.

FYI Alzheimers disease according to WIKIPEDIA can be broken down into 4 stages.

Pre-dementia - The first symptoms are often mistaken as related to aging or stress. Detailed neuropsychological testing can reveal mild cognitive difficulties up to eight years before a person fulfills the clinical criteria for diagnosis of AD. These early symptoms can affect the most complex daily living activities. The most noticeable deficit is memory loss, which shows up as difficulty in remembering recently learned facts and inability to acquire new information.

Subtle problems with the executive functions of attentiveness, planning, flexibility, and abstract thinking, or impairments in semantic memory (memory of meanings, and concept relationships), can also be symptomatic of the early stages of AD. Apathy can be observed at this stage, and remains the most persistent neuropsychiatric symptom throughout the course of the disease. The preclinical stage of the disease has also been termed mild cognitive impairment, but whether this term corresponds to a different diagnostic stage or identifies the first step of AD is a matter of dispute.

Early dementia - In people with AD the increasing impairment of learning and memory eventually leads to a definitive diagnosis. In a small portion of them, difficulties with language, executive functions, perception (agnosia), or execution of movements (apraxia) are more prominent than memory problems. AD does not affect all memory capacities equally. Older memories of the person's life (episodic memory), facts learned (semantic memory), and implicit memory (the memory of the body on how to do things, such as using a fork to eat) are affected to a lesser degree than new facts or memories.

Language problems are mainly characterised by a shrinking vocabulary and decreased word fluency, which lead to a general impoverishment of oral and written language. In this stage, the person with Alzheimer's is usually capable of adequately communicating basic ideas. While performing fine motor tasks such as writing, drawing or dressing, certain movement coordination and planning difficulties (apraxia) may be present but they are commonly unnoticed. As the disease progresses, people with AD can often continue to perform many tasks independently, but may need assistance or supervision with the most cognitively demanding activities.

Moderate dementia - Progressive deterioration eventually hinders independence; with subjects being unable to perform most common activities of daily living. Speech difficulties become evident due to an inability to recall vocabulary, which leads to frequent incorrect word substitutions (paraphasias). Reading and writing skills are also progressively lost. Complex motor sequences become less coordinated as time passes and AD progresses, so the risk of falling increases. During this phase, memory problems worsen, and the person may fail to recognize close relatives.Long-term memory, which was previously intact, becomes impaired.

Behavioural and neuropsychiatric changes become more prevalent. Common manifestations are wandering, irritability and labile affect, leading to crying, outbursts of unpremeditated aggression, or resistance to caregiving. Sundowning can also appear. Approximately 30% of patients develop illusionary misidentifications and other delusional symptoms. Subjects also lose insight of their disease process and limitations (Anosognosia). Urinary incontinence can develop. These symptoms create stress for relatives and caretakers, which can be reduced by moving the person from home care to other long-term care facilities.

Advanced dementia - During this last stage of AD, the patient is completely dependent upon caregivers. Language is reduced to simple phrases or even single words, eventually leading to complete loss of speech.Despite the loss of verbal language abilities, patients can often understand and return emotional signals. Although aggressiveness can still be present, extreme apathy and exhaustion are much more common results. Patients will ultimately not be able to perform even the most simple tasks without assistance. Muscle mass and mobility deteriorate to the point where they are bedridden, and they lose the ability to feed themselves. AD is a terminal illness with the cause of death typically being an external factor such as infection of pressure ulcers or pneumonia, not by the disease itself.
aprons 3

14 comments:

Queen-Size funny bone said...

I'm a firm believer in people need to be where they will get the best help. This why after working in a nursing home for 23 years I would seek professional care at this point. I have had the experience that people will behave and do things for strangers that they will not do for family members. Home is not always the best answer. I commend you for hanging in there. My husband isn't quite that bad and that has its own problems also. You are correct that the caregiver doesn't really get a second thought it this situation. take care of you

The Local Cook said...

You're in my thoughts and prayers. Just watched my grandmother and mom go through this. It's s toughie.

Martha said...

Ten days until SLO, right? But whose counting?
Sleep deprivation is a bi+ch.
These pts are challenging just as a visiting nurse, being a live in caregiver just humbles me on so many levels.
Big ((HUGS)) coming your way to you and Dh. Oy vey re.your MIL and FIL's decline, so sad and angering also.

jenjen said...

Oh Tamy,
What a huge burden that is. I have never been through anything like that, but a good friend of mine died this past year of breast cancer after a long, long struggle and I saw how hard it was on her caregiver. Please take time for yourself - to recharge. Would it be helpful to go to a support group or something like that?

I will keep you in my prayers!

((hugs))
Jen

Martha@Menagerie said...

::Sigh:: I can certainly understand Tamy. I've been where you are and am heading in that direction again soon to come. Even with such an informative post like you've written here there is just no way to describe what it's like to live it.
You have my thoughts, hugs, and prayers.

Forgetfulone said...

Oh, Tamy. This has been so hard on you! When are you guys moving? Hopefully soon. You need to take care of you! Big hugs. Di

Joyce said...

Hi, Tamy,
I feel like such a wimp now. My mom is 84 years old and lives in an adult family home, since she has lost so much muscle mass through disuse that she no longer walks, and has to be repositioned every two hours. I have often gotten frustrated over the years at her refusal to do what is wise and in her best interests. BUT...You have it much harder, and right where you have to live with it.

I hope you and your husband can figure out the best thing to do for all of you.

Love,
Joyce

Kristen said...

I watched my mom take care of my grandfather much like you are taking care of your mil. She had been asking her folks to come live with her (they were in NY and she was in AZ) and her mom kept putting her off. Mom didn't even know her dad had AD until she and my dad walked into the apartment. He never recognized her in all the time she took care of him, he had turned into a bully who hit, he argued with everyone. He died within 6 months of moving to AZ.

Hang in there! Our thoughts are with you.

Kiy said...

I know you meant this as an informational, but my heart just goes out to you. We are dealing with something similar, but no where near what you are (MIL is in VA, we are 'safely' in SC). The state did step in in our case and she was moved to an assisted living (closer to a nursing home in my mind) against her wishes. It was a relief, as the 'state' is the bad guy (in her mind, the rest of the family ... a godsend). But, as you said, it's because she wound up in the hospital and came to their attention.

I wish I had some way of helping, you are always a positive shining star in my life! Thinking of you, sending cyber hugs,
Kiy

~3 Sides of Crazy~ said...

Thank you everyone for your thoughts and prayers.

Kiy hit the nail on the head, this was supposed to be informative for others, but I now realize how much I needed to say it too.

Tammy you are so right also, but in this case family or stranger she pretty much just acts the same. The filters are gone from her brain and mouth and the childlike tantrums prove it daily.

Jen I have been to support groups mainly in search of answers for her, but as much as they want to help, there is only so much that any one person or group can do where free will and enabling by others (FIL in particular) reigns. I also can't blame him as he sits here watching his loved one slip into her own world. I know he feels helpless.

Kristen, that's how it became with grams. She only knew me and my uncle and once she had to be placed in an adult facility for much the same reasons we limited the people to just my uncle and his wife by choice. She could not be 'handled' by the nurses if there was too much going on. You can only be asked to "move" someone so many times before you do what you have to do. My girlfriend's mom is in the same situation and they're looking for a 5th home for her and the doctors have added major medications to try and control the behavior.

Joyce, free will can be a bear! They are chronologically adults so unless they act in their best interests no one else will help and it becomes a vicious circle.

Martha as I know you know what this is like all I can say is my prayers are with you too! We'll keep each other sane.

A Year on the Grill said...

Tamy, I thought all night about how to respond to your post. I am sure this grew from an wspecially frustrating time, and I hope it gave you just a bit of release to put your thoughts in writing.

My heart aches when i hear these stories. the tragedy of a life going backwards is too much to consider. Both my mother and my wife's mother are getting to an age when these possibilities need to be at least considered and talked about. It is all so frightening.

I will remember you in prayers. Not for your families health as much as for you to have patience, perspective and a release.

~3 Sides of Crazy~ said...

Thanks Dave. We appreciate all the prayers. The post did grow from sleep deprivation, frustration and the realization that sometimes you just have to bang your head against that wall enough times to realize that when someone you love chooses to be in a wait and see mode you can only do so much. I also hope to remind others to make sure that their parents have health directives in place and early detection of this or any other ailment that might impair their decision making abilities.

My FIL has decided he doesn't want to make the move back to CA to be with family after all and as he puts it, he's in "WAIT AND SEE" mode. According to them they want to die right now.

I did the wait and see mode with my grandmother. We tried and tried to get her to put it down in writing what she wanted long before the first signs were even visible to us. Her condition advanced VERY quickly, literally less than 6 months from diagnosis to needing live in care to assisted full time care in a facility. And then my uncle and I were forced to make decisions for her.

Being the realist I am I realize wait and See mode doesn't work with disease that progress with no cure in sight unfortunately. And that only makes it more heartbreaking and frustrating. I know it's in God's hands...

Heather said...

I'm sorry Tammy. You have a lot on your shoulders and no one can fully understand what that's like unless they have been in that same situation themselves. My grandfather has dementia and my grandmother is his primary caregiver. won't let anyone else help and won't go move from their big house into a condo or a retirement home. she's exhausted but won't change a thing. she thinks it would be too upsetting to him if she would change something. even though he can't remember who she is half the time. I'll be praying for you, sending you strength, and hope.

Janet said...

Ahhh, Tamy...it's so tough, I know it. Big hugs to you.