A Weekend At Eddie's

It has been a month since I have last seen my dad. What a difference a month has made. He's not walking anymore, using a wheelchair now to get from bed to the table where he spends most of his day. His confusion has reached a new level. I apparently moved to Canada, unbeknownst to me. On the bright side, they do have a good health care system up there and the Canadian ecconomy is humming along. But he still knows me and he definitely appreciated my visit.

On Thursday, I took my dad to see his one remaining doctor, a shrink who works in the cancer division of NYU Hospital, primarily with geriatric patients. He has been wonderful to my dad and to our entire family. While in the waiting room, my father was asked to fill out a form describing what his last two weeks have been like. He read it through carefully and then handed it to me without a mark. "Ask me the questions," my dad instructed me, "and you can put my answers down." Simple enough. All the reports I had received over the past few weeks have been quite depressing: he has not been sleeping, he has been angry, some days he won't get out of bed, etc.

OK, here we go: Dad, have you had any trouble falling asleep or getting up frequently through the night? No. How is your mood -- are you sad or depressed? No. Do you find yourself getting angry or agitated? No. Loss of appetite? No. And on and on. After we completed the 20 questions, the aide at the desk looked up and smiled: "Looks like your dad is doing better than you are." At that point, I could no longer contain my laughter. It felt good to let it out. One might chalk up all these inaccurate answers to his dementia, but my father has been really good at denial all his life. Some things never change.

My sister had a 2,000 piece jigsaw puzzle at her house. I figured it was worth a shot. Maybe my dad could pick out the straight-edged pieces or possibly even connect a piece or two. Worst case, it would give me something to do for the hours we sat together at the table. It turned out to be a stroke of genius. My dad did find a straight-sided piece or two, but for the most part, the puzzle was beyond him. On the other hand, he sat there with me for hours, intensely engaged by the fact that I was making almost no progress at all. The puzzle was of a villa in Tuscany. Of the 2,000 pieces, 1,000 were blue (the sky) and 1,000 were yellow (the hay). I've completed my fair share of puzzles in my life, but this was ridiculous. My failure to make much progress day after day somehow deeply intrigued my dad. When I stopped by this morning to say good-bye and woke him up out of a deep sleep, his first words were: "Did you finish the puzzle?" Cute.

My brother Rich, his wife Marie, and I took my dad to dinner last night. On the way, he asked to stop at every store window as if it were the first time he had been on the streets of New York. He also had a comment about every person who walked by, often loud enough for them to hear. One very pretty and tall young woman came past us, with extremely short shorts. "That one has some pair of legs," my dad opined. Yes, she did. The dementia has not stripped him of his good judgment.

As we walked home, my dad was struggling to figure something out. That may be the saddest part of all this. One can see his mind turning over and over, yet nothing is making sense to him. He turned to us and said, "I guess as long as we are together, it's alright." That's exactly right, dad. That's exactly right.

EARLIER ON HUFF/POST50: 7 TIPS FOR CAREGIVERS

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• Let The Person Speak

  When an ill person brings up subjects that make you feel uncomfortable, it's natural to want to squelch the discussion or rapidly change the subject. However, it's very important to listen unselfishly and avoid responding with, for example: "Let's not get into that right now. Can't we discuss something more pleasant?" or "Do you really think it's helpful to dwell on this topic?"

• Know When To Say "I Don't Know"

  Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don't want her to think that you don't care or that you're hiding something, and you definitely don't want to offer misinformation that might do more harm than good.

• Don't Hesitate To Call In Spiritual Help

  Even for people who weren't very spiritual or religious throughout most of their lives, it's natural to experience spiritual anxiety during a serious illness. And it's also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, 'What's next? Will prayer help? Why did God let this happen to me?' it's best to call in a qualified cleric.

• Let The Tears Flow (The Patient's And Yours, Too)

  Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, "It's okay. Don't cry." From now on, continue to pass the tissue when your ill loved one starts to tear up, but don't pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and can be very therapeutic.

• Resist The Urge To Spout Platitudes

  When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, "Everything will be okay," "I know how you feel," "God has given you a long life," or "It's God's will." While we hope that these phrases will be a quick fix to problems we'd rather not deal with, the truth is that they're trite and meaningless. What's more, sugarcoating reality doesn't fool most people, and it certainly doesn't spark positive change.

• Respond Constructively To Anger

  Anger is a natural human emotion, and it's important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it's not unusual for caregivers to be on the receiving end when their loved one's fuse blows for any reason.

• Seek To Connect Heart To Heart

  Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.

 

Comments

[Jenny Michaels]

02:43 PM on 07/25/2012

For those who are looking to keep their loved ones aging within the comfort of their own homes, please watch this short video on how in-home care can help you and your family: http://www.youtube.com/watch?v=y50zVD-7RsE

[dodge45]

04:37 PM on 07/14/2012

After my Dad passed away, I was the only child, left to care for my Mother. My sister, was in another state, and used every excuse imaginable, to avoid moving back to help care for Mom. I retired and began my 24 hour care. I became dreadfully ill one time, which convinced me to hire someone (a caregiver) to stay with Mom, 12 hours a day. Luckily, my Dad had left adequate money to care for Mom, so I found the best caregiver, I could, and paid her well. She was a real jewel. After about 6 months, Mom, began to walk out of the house and refuse to be returned, nor did she remember anything about it, or her name, birthday, etc. The only answer at this point was a nursing home.


I did review and go see nursing homes, so I could find the best one for her. My sister threw fits, when she learned Mom was no longer at home. After approximately a year, my sister moved home, but then Mom had a stroke within a few months. A feeding tube was necessary to sustain life. It was against Mom's wishes, but Doctors seem to do what the oldest child wants (my sister, in this case.) Long story short, Mom passed away, a year or so, later. Please, always be patient and seek out proper care for your loved ones. They are so fragile and need to be in a safe environment.

[materialgirl3763]

08:04 AM on 07/30/2012

Unfortunately, it always seems there is one child who steps up to the plate...and another who dodges the ball at all costs. My mother gave me an article years ago that explained very clearly why she and my father refuse to give permission for them to get a feeding tube, if--and when--the time for that decision comes: you're not prolonging my living...you're prolonging my dying.

May God richly bless you for the sacrifices you made in order to provide the best care for your mother!

[9892]

04:22 PM on 07/14/2012

My mom looked at my teenaged daughter and called her by my name. I corrected her, and told her I was her daughter. She said, "you can't be - you are way too old". I would say that was the moment I realized there were some funny moments to cherish (believe it or not), and that she was in a happy place. The last thing she said to me one day when I was leaving to go home was, "I love you". She died the next day - unexpectedly, but happy.

[dodge45]

05:30 PM on 07/14/2012

Cherish the time you had with her. My Mom had Alzheimers and I am sure doesn't remember her last year or so. Bless her heart, at one point, sitting in the Doctor's waiting room, she explained to me, all about when I was adopted. That was quite a shock, as I was 52 then. Let them believe what they wish - they are with you for such a short time. Let them be happy!

[pkspassion]

03:58 PM on 07/14/2012

I would deemit an honor to care for my Mom or Dad had they lived to old age, they were always here for me, and made many sacrafices raising me. I am sure it wasn't all pleasant. I don't believe in nursing homes, after reading these posts I think I would like to volunteer time in one. How scary to not know who you are or why...

[Eileen Carman]

03:48 PM on 07/14/2012

Nice article about a good relationship with the author's dad.

[nemo1967]

03:46 PM on 07/14/2012

this is sad story..... evey body had one demntia like my mother ..they are worry about elderly people like tthat......

[AliSanders4077]

03:26 PM on 07/14/2012

I was up in the mornings at 6:00 to exercise, then go over to start the day. She could not hear good, so we got hearing aids; she wouldn't wear them.....eye examination and new glasses....but in the latter stages, she could no longer walk. So it was a wheel chair and a lift chair and I had no qualifications for this. However, I changed my attitude to a very loving, caring person when I became a Christian, and I am not bragging, but I never said a harsh word to my mom at any time. In the last stages, as I look back, it wasn't alzheimers.

Caregiving was the most rewarding thing I have ever done. Yes, I did get annoyed, and aggravated as anyone would, but if I felt like screaming, I went outdoors. I paid for my utilities by selling wood for my brother, so I was demoted from a Deputy Clerk to a wood sales person, but having it hard makes a person grow up.

We had to carry her to the hospital because she had pernicious anemia most of her life, but she would no longer eat, so they tried to put a feeding tube down her and she fought it all the way. They never gave her blood, but said she would have to go to a nursing home for recovery. As most of you know, sometimes that is the last stop. Four days, and she was gone.

[help1958]

03:24 PM on 07/14/2012

I am a caregiver to others and a caregiver to my parents family, it can be a difficuth situation. I have too work for a pay check (which I take seriouslly, then I have to work for my parents who are elderly,) my life is consumed..HELP!!! I want to take care of them both!!!!

[AliSanders4077]

03:14 PM on 07/14/2012

After leaving my job, my brother brought my mom over from the old homeplace. She was not being treated right by my sister and brother who lived with her or nearby. She inherited my dad's estate while she was living, and after they used all her money (which to me is elderly abuse) she is next door.

I was offered several jobs, but each time I was going to go, mama would get ill...I couldn't go of and leave an 82 year old woman who could not operate a microwave; however in the early stages she could use the remote for the tv..I was offered several government jobs, but it was always the same. My brother cut wood in the morning, and went to work at 2:00 in the afternoon which left me there. I felt trapped at first, but couldn't be unfeeling. Finally they traced her illness to a gall bladder attack.

After it was removed, she seemed in better spirits so I applied for a Hope Scholarship to go back to school...no....ill again...it just seemed like manipulation as I look back on it. But for 12 years until she passed away at the age of 94, I was there. We thought she had alzheimers, because everything had to be done for her. continued

[sunrise-ps]

03:36 PM on 07/14/2012

God Bless you dear.

[AliSanders4077]

10:14 AM on 07/15/2012

I was not trying to brag just trying to show people that a caregiver has a lot of problems also....but I appreciate your comments.  Remember everyone inquires about the person who is old and ill, and don't think about what the caregiver has to go through. 

[The Dominion]

02:57 PM on 07/14/2012

Everytime I read articles like this, the best thing I can think to do, when my heart starts to ache for all the hurting families represented in this story is...

hug my Mom and tell her I love her - every day.

She's healthy and strong at 80 - so far - but life can change on a dime.

And so it goes.

[breadmanhere]

05:13 PM on 07/14/2012

Yes my Mom is 91 and I cherish my weekly visits with her . she can be real trying at times but she is 91 and entitled . She still treats me like no other person in the world would treat me .. like a kind caring mother looking after her son ..till this day even at age 91. life is so short .. we are just passing thru ..You only get one mother and treat every day as a gift .

[flight5550]

02:29 PM on 07/14/2012

There are certain benefits to Alzheimer's. Mom had always been a tough one, but when she developed Alzheimer's, it somehow softened her. Our relationship grew over those 7 years. Dad died of cancer after the first year, and we had to put her in an Alzheimer's nursing home. It was sad but at least she didn't remember that he had died. She talked to him and believed he was right there with her, as he had been for over 60 years. I even found myself acknowledging his presence and who's to say he wasn't there watching over her. I'm glad that we had those final years. Yes, Alzheimer's is a terrible disease but............

[fannymic]

01:46 PM on 07/14/2012

Life certainly does know the art of the bluff in the poker game of life. What a flying fickle finger of friggin' fate befalls families. Laugh and love all you can while here on this besieged ol' earth. Life will eventually overtake.

[flyinpigtoo]

01:34 PM on 07/14/2012

http://www.lowdosenaltrexone.org/index.htm#What_diseases_has_it_been_useful_for

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What diseases has it been useful for and how effective is it?
> Bernard Bihari, MD, as well as other physicians and researchers, have described beneficial effects of LDN on a variety of diseases:
Cancers

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Lymphoma (Hodgkin's and Non-Hodgkin's)
Malignant Melanoma
Multiple Myeloma
Neuroblastoma
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Pancreatic Cancer
Prostate Cancer (untreated)
Renal Cell Carcinoma
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Other Diseases

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Emphysema (COPD)
HIV/AIDS

Autoimmune

Neurodegenerative:

ALS (Lou Gehrig's Disease)

!!!!!!ALZHEIMERS!!!!

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Multiple Sclerosis (MS)
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Behcet's Disease
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[johnria]

01:28 PM on 07/14/2012

Very touching story. I hope my children will not need to cope with this but a relative of mine just went through the experience. Dreadfull to see the loss of contact.

[flyinpigtoo]

01:25 PM on 07/14/2012

Please research this for yourself and those you love:
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Do web searches: there are many websites, videos, discussion groups and International Conferences.

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TREATMENT for:
Alzheimer's Disease
Autism Spectrum Disorders
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What diseases has it been useful for and how effective is it?
> Bernard Bihari, MD, as well as other physicians and researchers, have described beneficial effects of LDN on a variety of diseases:
Cancers

Bladder Cancer
Breast Cancer
Carcinoid
Colon & Rectal Cancer
Glioblastoma
Liver Cancer
Lung Cancer (Non-Small Cell)
Lymphocytic Leukemia (chronic)
Lymphoma (Hodgkin's and Non-Hodgkin's)
Malignant Melanoma
Multiple Myeloma
Neuroblastoma
Ovarian Cancer
Pancreatic Cancer
Prostate Cancer (untreated)
Renal Cell Carcinoma
Throat Cancer
Uterine Cancer

Other Diseases

Common Colds (URI’s)
Emphysema (COPD)
HIV/AIDS

Autoimmune

Neurodegenerative:

ALS (Lou Gehrig's Disease)
Alzheimer's Disease
Autism Spectrum Disorders
Multiple Sclerosis (MS)
Parkinson's Disease
Primary Lateral Sclerosis (PLS)
Transverse Myelitis

Other Autoimmune Diseases:

Ankylosing Spondylitis
Behcet's Disease
Celiac Disease
Chronic Fatigue Syndrome
CREST syndrome
Crohn's Disease
Dermatomyositis
Endometriosis
Fibromyalgia
Hashimoto’s Thyroiditis
Irritable Bowel Syndrome (IBS)
Myasthenia Gravis (MG)
Pemphigoid
Psoriasis
Rheumatoid Arthritis
Sarcoidosis
Scleroderma
Sjogren’s Syndrome
Stiff Person Syndrome (SPS)
Systemic Lupus (SLE)
Ulcerative Colitis
Wegener's Granulomatosis

> LDN has demonstrated efficacy in thousands of cases.

Low Dose Naltrexone (LDN) may well be the most important therapeutic breakthrough in over fifty years. It provides a new, safe and inexpensive method of medical treatment by mobilizing the natural defenses of one’s own immune system.