Re: Barbara/ Dad's dying

[Guest guest]

But nobody can give me a timetable (of course). One day his hands are freezing

and his lips are blue and his BP is way down, next day he's warmed up and BP up

and he's semi-lucid. Next day he's talking gibberish all day. Is there some sort

of predictable pattern or is it just individual? Can I get a sense of timing

from the onset of certain symptoms? I feel like I'm grieving already.

Hi Barbara,

My heart goes out to you in your grieving. I hate this dreaded disease. There

are so many symptoms that go along with it. Everyone suffers in this disease. It

sounds to me like your dad/husband? I'm sorry, I am not clear on who the (Loved

One) LO is with LBD. It sounds like he has Orthostatic Hypotension or OH, which

is a very common symptom with LBDers.

Here is what someone in this group wrote in the past about OH.

Orthostatic Hypotension (a sudden drop in BP caused by stress or exertion) is

one the the Autonomic nervous system symptoms typical of Lewy body dementia.

(Others are excessive sweating, feeling overly warm or cold, difficulty

swallowing, fainting, etc.) As you experienced, the patient returns to " normal "

after resting or stress relief.

Unfortunately, there are not stages to follow in LBD such as in Alzheimers,

because the symptoms are all over the place and not everyone has the same

symptoms at the same time in their stages. Here is LBD Phases put together as

seen by LBD caregivers to give you an idea of where your LO might be in the LBD

phases. (See Below)

Jan Colello

Husband, Jim, dx w/LBD/PDD Oct. 2003, but showed symptoms of dementia in 2000

Deceased, January 22, 2011

 

LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSES

June 2007

　

Facilitated by Sue 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

 

 

Reply to sender | Reply to group | Reply via web post | Start a New Topic

Messages in this topic (1)

Recent Activity:

New Members 4

Visit Your Group

Welcome to LBDcaregivers.  

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

..