A Serious Comment along with some Dementia Humor

I noticed this in the comment section. It’s from Hope Stewart in Petaluma, CA. I am deeply touched by Hope’s courage and strength for reaching out for help and advice. I, alone, feel that I would be doing her a disservice by trying to answer this. Yes, I know all the textbook things to say. However, I think she needs some real practical advice and suggestions from other caregivers at this crucial time in her life…………to all my readers. Please read her comment seriously and then contribute your thoughts and advice at the bottom of this post where it either says, “NO COMMENTS” or “3 COMMENTS“, etc. Click on that button and go to the end of all the comments and post some pearls of wisdom in the REPLY box. On behalf of Hope, I’m thanking you in advance.

Well, I want to test your resolve and see if you will respond to my email.I have e mailed you privately in the past and now ask for your advise on how to accept this disease. My husband Gordon is in an Altzeimer’s study at UC Davis and was diagonsed with Lewy Bodies 5 years ago. His evaluation yesterday gave me sad news. He has deteriated greatly in the past year. (poor executive skills, cognitive skills, no adl’s. They told me that usually a persons rate of deteriation is a predicter of what is to come. They said his is in the moderate/severe stages of Lewy Bodies. I’ve been going along with acceptance of “what is”. but now I’m sad and crying and scared. Any words of advise from you, a psychiatrist?

So glad your new year is starting off with good news.

Best, Hope Stewart

To the best of my knowledge, no one chose the correct answer from this block puzzle the other day. If anyone did, they didn’t make a comment on it.

One of the best ways to deal with the painful reality of dementia is to use some humor. If anyone gets angry with me, that’s OK. I did horribly worse when I took my first neuropsychological test! I can laugh at myself even though it is sad.

Three older men are undergoing a memory test at the doctor’s office.

The Doctor asks “What is three times three?”

The first man answers “274.”

The second man answers “Tuesday.”

The third man answers “Nine.”

The doctor pleasantly surprised at the third man’s
correct response, inquires “Great! How did you get that
answer?”

“Simple. Just subtract 274 from Tuesday.”

Someone wanted me to post a picture of me after my comment yesterday about trying to visualize people. If you look under the comment sections of some of the posts, there should be a small picture of me when I’ve made a comment.

Warmly………….David Thomas

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11 Responses

  1. My mother did not qualify for study/drug testing. It had only been one year since she was diagnosed with Frontotemporal Lobe Dementia. It is overwhelming. After sitting with my sorrow, I have found peace in focusing on the daily. This day, today is still a gift. It still has value and the person that I love (greatly altered) can still have a high quality of life. Her life can be enjoyable and I can enjoy her when she is happy/content. I know the day will come when what we have today will be a pleasant memory. This is where I am right now and it is an okay place to be.

  2. Your mate has Lewy Body Dementia

    Join LBDcaregivers@yahoogroups.com
    There you will gain an education in LBD and caregiving.

    Then;
    First you cry, after which you pull up your bootstraps for him. Your goal now is to make his life as comfortable and pleasant as possible, within limits. All caregivers need help. Set limits for yourself. He does not know to help you do that for you. He will only add to you load when you’re past your limits. Be careful that you don’t become resentful and start hating the whole caregiver role.

    Find an outlet for both of you, then for him, and a seperate one for yourself. You may be as close as two peas in a pod as my husband and I are, but there is a need to take care of your needs, spitirually, creativly, and socially. Don’t become so wrapped up in his care that you become ill from a lack of balance in your life. Take Care of Yourself! Don’t become housebound.

    Don’t become so concerned with caregiving duties so as to forget his need for your love. Touch him, hold him, and look in his eyes with love. Tell him of your love many times a day. Don’t forget each time is the first time for that day.

    When he can no longer communicate, then you cry (alone). You are activily mourning the loss of your companion in conversation, but you still have him, as stated above. Let him know he is the love of your life all the time.

    If he has hallucinations go along with them, they are real to him. Encourage him talk about them, if he can.

    If he is prone to violence, stay clear of arguments.
    With LBD you won’t win one argument.
    Clear the house of any and all objects that can be used to harm you. He is fighting hallucinations, not you, but he can hurt you seriously. This may be time to find a suitable place to let him live. For all your safety.

    In my case, I was not able to care for my husband’s daily needs. I’m 76 in poor health, I had to help my husband inter a nursing home where his daughter is a nurse. That was one of the hardest things I’ve ever had to do, but love looks for what is best for your Loved One. Love is not an emotional clinging and trying to care for him at all cost even of your health. Sometimes caregivers die before their mates.

    My husband was lucid and signed all the papers to go into the nursing home, but since he is in the Nursing Home, I have had to overcome his begging to come home with me every day. It hurts to the core, but I can’t care for him. I visit about three hours a day, two hours before lunch, and after I have lunch with him, I tuck him into bed for his afternoon nap.

    Love overcomes a lot, but love can also stand in the way of doing what is pactical and what is needed.

    This is a terrible rolling Coaster ride, for him and for you. He knows what is happening and yet can’t help the things he does or says. I can’t imagine what is going on in his mind, and how he is coping with it. It must be terrible to say the least.

    If he suddenly starts actling differently from normal, he may have a UTI. It is obvious when our mates have a cold or pneumonia, but not a UTI. Keep that in mind.

    This is my thoughts as of now, but over time, I may have more.

    Sincerely,
    Imogene

  3. Your mate has Lewy Body Dementia

    Join LBDcaregivers@yahoogroups.com
    There you will gain an education in LBD and caregiving.

    Then;
    First you cry, after which you pull up your bootstraps for him. Your goal now is to make his life as comfortable and pleasant as possible, within limits. All caregivers need help. Set limits for yourself. He does not know to help you do that for you. He will only add to you load when you’re past your limits. Be careful that you don’t become resentful and start hating the whole caregiver role.

    Find an outlet for both of you, then for him, and a seperate one for yourself. You may be as close as two peas in a pod as my husband and I are, but there is a need to take care of your needs, spitirually, creativly, and socially. Don’t become so wrapped up in his care that you become ill from a lack of balance in your life. Take Care of Yourself! Don’t become housebound.

    Don’t become so concerned with caregiving duties so as to forget his need for your love. Touch him, hold him, and look in his eyes with love. Tell him of your love many times a day. Don’t forget each time is the first time for that day.

    When he can no longer communicate, then you cry (alone). You are activily mourning the loss of your companion in conversation, but you still have him, as stated above. Let him know he is the love of your life all the time.

    If he has hallucinations go along with them, they are real to him. Encourage him talk about them, if he can.

    If he is prone to violence, stay clear of arguments.
    With LBD you won’t win one argument.
    Clear the house of any and all objects that can be used to harm you. He is fighting hallucinations, not you, but he can hurt you seriously. This may be time to find a suitable place to let him live. For all your safety.

    In my case, I was not able to care for my husband’s daily needs. I’m 76 in poor health, I had to help my husband inter a nursing home where his daughter is a nurse. That was one of the hardest things I’ve ever had to do, but love looks for what is best for your Loved One. Love is not an emotional clinging and trying to care for him at all cost even of your health. Sometimes caregivers die before their mates.

    My husband was lucid and signed all the papers to go into the nursing home, but since he is in the Nursing Home, I have had to overcome his begging to come home with me every day. It hurts to the core, but I can’t care for him. I visit about three hours a day, two hours before lunch, and after I have lunch with him, I tuck him into bed for his afternoon nap.

    Love overcomes a lot, but love can also stand in the way of doing what is pactical and what is needed.

    This is a terrible rolling Coaster ride, for him and for you. He knows what is happening and yet can’t help the things he does or says. I can’t imagine what is going on in his mind, and how he is coping with it. It must be terrible to say the least.

    If he suddenly starts actling differently from normal, he may have a UTI. It is obvious when our mates have a cold or pneumonia, but not a UTI. Keep that in mind.

    This is my thoughts as of now, but over time, I may have more.

    Sincerely,
    Imogene

  4. Hope, I’m not a professional but maybe my thoughts might help. My mother was diagnosed with Mild Cognitive Impairment in February 2006 at the age of 84. By September 2006, she began having hallucinations and a great amount of confusion. In November 2007, she lost the ability to walk at all and by mid-2008, the ability to support her weight disappeared. Around that same time, she lost the ability to feed herself. She is now in the advanced stages of LBD with Parkinsons.

    Although I am now in the role of parent and Mom is in the role of child, I don’t dwell on that because it’s too painful. There are moments when I can’t hold it together and moments when much laughter is shared; there’s not much warning when either emotion might overcome me. There is nothing that can be done to change the outcome of this journey so we travel it together not concentrating on what is waiting for us down the road but taking one day at a time. This journey has given us time to resolve any differences that might have existed. It has given us time to say “I love you” daily, something that didn’t happen before her illness was recognized. It has also given us a greater opportunity to reflect on the past and happier times that have become a part of our very being. Mom’s smile is no longer taken for granted; it is treasured as if it was a rare gem. All of that is what helps this journey to continue, looking forward to the next day that Mom is able to enjoy the time together.

  5. My Mother(LBD) and I try to go day by day. I lost my best friend and lover to Parkinsons with dementia 5 years ago. You cry, you try to ignore what tomorrow may bring. The more you can stay in the here and now the better it will be. Yesterday and tomorrow don’t count. We’ve also learned to laugh a lot. It’s the only thing you can do
    Take care

  6. Hello Hope,
    My husband was diagnosed with LBD in 2003, but he actually was into it in 2000 all the signs were there. The neurologist wasn’t up to date yet on LBD, so it took time for the diagnosis. Hope, it is very scary to think of being without your spouse, your fears are normal and the emotions. I am at the same point with my husband. I see you have Participated in the UCDavis Study. I live in the San Francisco Bay Area in the East Bay. Please contact me if you would like; janetcolello@yahoo.com
    A few years ago the Caring Spouse’s Support Group for LBD compiled a list of phases that were common to our LOs (Loved Ones) Not all LOs will follow the same pattern, but it can give you a good idea of where your husband is in the big picture of Lewy Body Progression. We call them Phases, because Lewy Body does not follow the typical Alzheimers Stages, but the stages also can be helpful. The two combined can help.
    Here are the Lewy Body Phases to give you an idea:
    LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSES
    June 2007
     
    Facilitated by Sue Lewis of West Virginia, edited by June Christensen, Kansas

    Please be aware that the following piece is based on the discussions and observations of the LBD caring spouses.  It is in no way based on research or science and is not intended to represent research or science.  It is developed to assist newly diagnosed families with a framework to refer to.  As one retired spouse has said, “To be forewarned is to be forearmed.”

    The phases have no specific time frame.  Due to the fluctuations of the disease, the phases are not linear.  Instead, phases tend to “ebb and flow” or subtly appear.  Symptoms noted in an early phase may be present for the course of the disease.  These symptoms may increase in frequency or severity over time.  In addition, patients that are “high-functioning” may also show symptoms of Phase III or IV.   By no means will a patient display all the symptoms listed in any specific phase.  Therefore, each phase is described with “possible” symptoms. 

    GLOSSARY OF ACRONYMS
    ADL Activities of Daily Living – dressing/bathing/ feeding oneself
    BP Blood Pressure
    CG Caregiver
    DME Durable Medical Equipment–wheel chair, shower chair
    DPOA Durable Power of Attorney
    LBD Lewy Body Dementia
    LO Loved One
    LW Living Will
    MPOA Medical Power of Attorney
    PCP Primary Care Physician
    POA Power of Attorney
    REM Rapid Eye Movement sleep disorder
    URI Upper Respiratory Infection
    UTI Urinary Tract Infection
    WCh Wheelchair
     

    PHASE I POSSIBILITIES
    Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny
    · Possible REM sleep disorder; Restless Leg Syndrome; Hallucinations; possible Parkinson’s disease diagnosis, Myoclonus (involuntary jerking)
    · Increased daytime sleep – two+ hours
    · Loss of sense of smell (Anosmia); vision problems; hearing loss; speech problems
    · Impaired physical coordination (ataxia); shuffling gait; slowness of movement; altered posture (called Lewy Lean)
    · Chronic runny nose
    · Impaired comprehension and cognition; inability to learn new tasks; loss of initiative and interests; diminished alertness
    · Short-term memory loss but able to hide (mask) symptoms or engage in show time
    · Mood: Fluctuations; depressed/anxious; paranoia; may accuse spouse of infidelity, aggression
    · Able to engage independently in leisure activities
    · Handwriting is affected; impaired ability to handle financial responsibilities
    · Still may be able to work but driving skills often compromised

    PHASE II POSSIBILITIES
    Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase.
    It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage of LO.
    Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.
    · Ambulates/transfers without assistance but increased risk for falls/requires walker; leaning to one side (Lewy Lean); possible fainting; able to perform most ADLs without assistance
    · Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth), occasional episodes of incontinence (one or two a month), constipation
    · Parkinson’s symptoms may be controlled with medication
    · Increased difficulty in:
    Finding words (aphasia); organizing thoughts; reading & comprehension; following TV programs; operating home appliances
    · May be able to administer own medications.
    · Able to follow content of most conversations
    · Able to be left unsupervised for two or more hours
    · Delusions; Capgras Syndrome (seeing or thinking that a person or objects have been replaced by another identical one); may be more depressed; more paranoid and more agitated

    PHASE III POSSIBILITIES
    Most caregivers have the correct diagnosis. Caregiver and patient actively grieve. Caregivers need regular planned respite. Caregiver needs require regular preventive health care.
    Caregivers may need home health aide assistance to maintain LO in the home. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety risk. The needs of the patient affect personal finances. Please note that symptoms from later or earlier stages can appear at this phase.
    · Ambulation/transfers are impaired, needs assistance with some portion of movement
    · At risk for falls; increase of Parkinsonism symptoms
    · Increase of autonomic dysfunctions; frequent episodes of incontinence (two+ per week)
    · Needs assistance/supervision with most ADLs; may require DME
    · Speech becomes impaired, projection (volume) may decrease
    · Able to follow content of most simple/brief conversations or simple commands; increased difficulty with expressive language
    · Able to be left unsupervised less than one hour but unable to work or drive
    · Unable to administer medication without supervision
    · Unable to organize or participate in leisure activities
    · Inability to tell time or comprehend time passing
    · Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring; increased confusion; delusions; and increased Capgras Syndrome
    · Severity of symptoms may increase or decrease

    PHASE IV POSSIBILITIES
    Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care.
    The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services. 
    · Needs continuous assistance with ambulation/transfers; high risk for falls; may need electronic lift recliner chair
    · Needs assistance with all ADLs; requires 24-hour supervision
    · Autonomic dysfunctions need regular medical monitoring; incontinent of bladder and bowel
    · Unable to follow content of most simple/brief conversations or commands; speech limited to simple sentences or one-to-three-word responses
    · Parkinson’s symptoms need regular medical monitoring
    · Choking, difficulty swallowing (dysphasia), aspiration, excessive drooling
    · Increased daytime sleeping
    · Hallucinations prevalent but less troublesome

     PHASE V POSSIBILITIES
    Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will.
    · Dependent for all ADLs; patient may require hospital bed, Hoyer lift or Mo-lift, suction machine, etc.); and assistance with repositioning
    · High risk for URI, pneumonia, and UTI ; skin breakdown; and may have a fever
    · Difficulty swallowing with possible decision for feeding tube necessary
    · Muscle contractions – hands, legs, arms; lean to either side very pronounced
    · May need nutritional supplements – Ensure/Boost/ Carnation Instant Breakfast
    · Unable to follow simple commands; decreased or no language skills
    · Constant delusions
    · Fluctuations less frequent and more severe
     May you find peace and comfort in knowing you are not alone.
    Jan Colello
     

  7. Dear Hope,
    You know all the cliches, i.e. time heals, etc..they may be true, but can’t help you now with this low point in your life.

    As a former caregiver I can only say, “I’m sorry.”
    If you have any time at all for yourself, I suggest journaling, or writing down some happier memoirs. As long as you have him, every day is a gift, find something pleasant to see or hear, and write down three things you are still grateful for.
    That could be anything, from the sunshine, to a favorite book or scarf.
    Keep love and kisses and faith in your life. Helene

  8. What a wise and kind decision to seek input from others to help Hope.

    If I were in Hope’s position I am sure I’d find the feedback helpful.

    However in your position I can imagine that being confronted with the way things may turn out could be extremely uncomfortable, even though I’m sure you knew it all already.

    I’ve been wondering how I would cope if I were in your position.

    Having no specific religious beliefs to guide me, I like to think I would try to view the future as an adventure to be experienced.

    Having worked that one out – maybe I can try to view my own future as an adventure?

    What a surprisingly comfortable thought that is.

  9. Just realized that I responded to all these comments under the Jan 9 blog. So if you want to read these go there. Thanks, Hope

  10. Dear Hope,

    I care for my Dad who has LBD and can only try to understand what it would be like to be caring for a spouse/partner in life with LBD. Having a loved one suffering with LBD is like a ‘long goodbye’. We grieve along the way.
    On grief, my mother passed away in 2007. I found comfort in reading and trying to understand the grieving process and it’s different stages. An example was the anger I felt. By reading I realised that the anger I felt was normal and part of the process. By understanding this I was able to give myself permission to feel that anger. Once I gave myself permission to feel that anger I was able to rationalise those feelings and thus work through those feelings and eventually was able to quell the anger.
    I realise that loving someone suffering from LBD is an on going form of grief. I can only hope that what I have written may be of some help.
    And grab what I call those ‘butterfly moments’ and cherish them. Why I call them Dad’s butterfly moments is because one day Dad was sitting, looking out into the garden and he said ‘I think butterflies pass through at the same time each day’. I hope you and your partner have many more ‘butterfly moments’ and my thoughts go out to you.

    And a message to David and all the other Lewy travellers. I find solace in the community David has created with his blog and I thank all of you.

    • Wow! Thanks for the “butterfly moments” concept. I like it…………..very cool.

      David

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