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Elder Care at Home

Ethan Kassel, MSW, LCSW, C-ASWCM, is a Licensed Clinical Social Worker with over 20 years of experience specializing in Geriatric Care Management. He is Co- Founder of Garden State Eldercare, a Licensed Home Health and Geriatric Care Management Company. Prior to forming Garden State Eldercare, he was employed as Director of Client Services for Senior Bridge (NY & NJ) and as Medical Social Worker for the Visiting Nurse Service of New York.
View Ethan's full Bio
Steve Barlam co-founded LivHOME in 1999 with Mike Nicholson, Chief Executive Officer. Since 1984, Steve has worked exclusively in the field of geriatric care management. His experience draws from work in both the nonprofit family services arena as well as from his own private for-profit care management firm.
View Steve's full Bio
Q:

My mother has Alzheimer’s. My sister became POA, I think, through my uncle who was my mother’s original POA. My mother does not remember picking my sister, who is 3 years younger than me. My sister put her in an assisted living facility and my mother is very upset. Mom had been living by herself for 4 years and is still able to take her own shower, get dressed on her own, fix her breakfast and take her medicine. I think she could still live on her own, but I do not have much say about that. My mother's attorney told my sister that she should take my mom's bank card, health card, ss# card and her checkbook. She also has both sets of keys to mom's car. This same attorney is also my uncle's attorney and, honestly, I don't trust him and think there is a conflict of interest. My sister and uncle put mom in there because they don't want to have to take care of her. I'm the one who has been taking care of mom since my dad passed away 4 years ago. Mom’s Alzheimer’s is getting worse I do believe, but she is still capable of taking care of herself. When she can't remember in the evenings, I'm always there. What can I do to get her out of the assisted living facility and take her back to her condo? Can I take her out of the assisted living place on my own? I am the oldest daughter. Mom has been begging me to take her home.


Jo from OH
A: Answered by Shana Siegel, Esq., CELA

This sounds like a very upsetting, but very common, situation. Different members of a family often disagree about the care of an elderly relative with Alzheimer’s. The progressive nature of the disease and the uneven progression of different aspects of the dementia make it hard to be certain about how to keep a person as independent as possible while protecting their safety at the same time.

The primary issue is whether your mother still has sufficient capacity to revoke her power of attorney and to appoint a new power of attorney. That is a legal question whose answer is based on a medical assessment. I would start by hiring an elder law attorney to represent you, and arranging to have a doctor’s evaluation of your mother’s capacity or to see her treating doctor’s evaluation of her capacity and of her remaining ability to perform the activities of daily living. If she has capacity, she can simply revoke her existing power of attorney and appoint you, putting you in charge of decision-making.

Because there has been a change of POA already, and your mother doesn’t recall agreeing to the change, it sounds as if she may not have capacity to appoint a new power of attorney. The next legal issue then becomes the appropriateness of petitioning the Court to appoint you as your mother’s guardian or conservator. You would present an argument to the Court as to why you would be a better guardian for your mother than your sister. You would likely point out to the Court the conflict in her current counsel’s representation of your uncle and your mother, and it is possible that the Court would assign new counsel to represent your mother. All of her immediate family would be notified and given the opportunity to participate in the Court proceeding. The Court will hold a hearing and make a determination in your mother’s best interests as to who should be her guardian.

All along the way, you will be getting more information about your mother’s health. That information might help you, your uncle and your sister come to some agreement about how best to care for your mother. If it doesn’t, the Court can be asked to intervene and determine what is best for her.
 

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Q:

My mother has no assets other than her home. She lives in a 55+ community and her home has not been well maintained. Five years ago she was diagnosed with Alzheimer’s. Her dementia has progressed and we are having difficulty taking care of her in her home. None of her childern can afford to take her, we all work and cannot afford caregivers or to quit our jobs. Most of us live in rural areas and can’t access day care. We will try to sell her home, but most homes in her community have remained on the market for years. My mother needs a nursing home or assisted living. Is there any way we could get into a facility if her house does not sell? I have looked into the cost of nursing homes—average cost in our area is $10,400/month, an unreachable possibility for us. My mother is a resident of New York state. We currently have home health aides coming in, but are reaching our financial limits. Any advice would be appreciated. 


Elaine from NY
A:

Dear Elaine,

That seems like a very difficult situation and there may be some resources available to you. I would suggest that you contact your local Alzheimer’s association to ask about services they may have in your area. It would also be very helpful for you to speak with a geriatric care manager who can help you coordinate all services and make sure you are getting all services your mother is entitled to receive. It sounds like she may be eligible for Medicaid. Here are some links for the Alzheimer’s Association and Geriatric Care Managers in your area.

1. http://www.alz.org

2. http://www.caremanager.org/
 

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Q:

Our community is for folks 50 and over. Most of our residents live in their own houses or villas; some are alone and some have spouses. I have an interest in investigating the requirements to offer limited care to some of the individuals. I was thinking about offering a service to move individuals from their bed to a wheelchair and then later on in the day to move them back. I could do this with a lift or could manage it myself if I was trained to do so. Is there a requirement for licensing in most states. I live in South Carolina. 


Sammy from SC
A:

The best advice is for you to contact the South Carolina Department of Consumer Affairs at http://www.consumer.sc.gov/business. There is much regulation and many legal issues that need to be addressed, and they vary state by state.  

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Q:

My mom has lived with me for seven months. She is 91 and has dementia. At certain times, she’s fine and then she can be totally confused and not even know who I am. My question is, would she be better off in assisted living or is she happier here? She's never left alone and every day I take her to senior day care or a friend’s house and they’ll go to a senior center. I'm a single mom who has a 17 year old and works full time as a realtor. Some days I just don't know if I'm doing the best thing for my mom, me or my daughter. Any advice? 


Patti from NY
A:

That does sound very frustrating and also very challenging in trying to balance what is best for everyone involved. If you find the right assisted living facility for your mom, you certainly would not be hurting her by moving her in. Unfortunately, her physically care will increase and her living in your home may prove to be more challenging. Things to consider:
1) Can your mom afford to live in assisted living?
2) Will you feel comfortable visiting her there?
3) How is this impacting you and your daughter? Is this causing a lot of tension in the home?

I am sorry that there is not an easy answer. I would suggest you contacting your local chapter of the Alzheimer’s Association. Speaking with others will help you better process your options. The website for the national organization: http://www.alz.org/.

All the best with this very difficult situation.
 

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Q:

I am the primary caregiver of my mom, 85 years old, who has Alzheimer’s among other illnesses including diabetes. She is entering in the last stages of Alzheimer’s. During the last 2 months or so she is having swallowing problems, mostly with the medications. I have help during the weekdays and some during the weekends. She does not take that long to swallow the pills when the other caregivers are in charge, but with me she takes an hour or more. I feel she is giving me hard time with almost everything, but not to the caregivers. She lives with me and I am in charge of taking care of her, but I feel so frustrated. Any advice? 


Ivette from VA
A: Answered by Ethan Kassel, MSW, LCSW, C-ASWCM

That sounds very frustrating and challenging. I would suggest speaking with your local Alzheimer’s Association as they can offer you support in dealing with this frustrating situation. I am attaching their link so you can reach out to them: http://www.alz.org/grva/. Your mom may be picking up on your frustration. The aides get to leave at the end of the day, which makes it much easier on them. Do you notice the aides doing anything differently with your mom that helps in getting her to take her medications? Has your mom had a swallow evaluation recently? If not, you may want to discuss that with her doctor.
 

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Q:

My family has a dilemma with my 84 year old mom who lives by herself. In general her health has been good and she is able to take care of herself—cook, clean, work in the yard, etc. Our longer term plan is to bring in live in help if/when she gets to the point that she needs more help. The problem is that she is a heavy drinker and in the past few months the number of incidents has increased where she is very drunk, passes out, or takes a fall. This week paramedics had to be called and she spent the night in the hospital. When she is drunk she is extremely belligerent—drunk dials the extended family etc. It's very difficult to get her to even discuss the problem because when she's sober she forgets what she’s done or downplays the severity of it. I'm at the point where I feel like I need to say your choices are staying in your current home but no alcohol or move to an assisted living facility. I hate to have to treat her like a child and demand that she stop drinking, but the alternative is not acceptable. I don't think live in help will be very helpful to manage her behavior. 


Sheila from WA
A: Answered by Ethan Kassel, MSW, LCSW, C-ASWCM

You are not treating her like a child, but rather working very hard to keep her safe. Unfortunately, she is not working with you. With the drinking problem you are describing, it may be difficult to get her into an assisted living. If your mom will accept any help I would try to get someone there during the day to start. The biggest issue is the drinking and how you can monitor that. I would suggest that you speak with her primary care physician and substance counselors about how to address her drinking. I would call your local department on aging and ask what type of assistance they can offer in this area. You may be able to get a social worker to visit the home with you to speak with your mom. Unfortunately, if she doesn’t get help she will have an accident and be forced out of the home. I would also suggest you consider hiring a Geriatric Care Manager to go in and assess your mom. They will be able to help you make long term plans and find the right resources.

Here are links for the Department on Aging, Washington Recovery Helpline and National Association of Professional Geriatric Care Managers where you can find someone in your area:

http://www.caremanager.org/
http://www.warecoveryhelpline.org/
http://www.agingwashington.org/
 

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Q:

My former mother-in-law has moved in with my husband and I. She is afraid to be alone, has periods of dementia and exhibits episodes of hallucinations and delusions. This all seems to be related to a diagnosis of Parkinson's. I am a retired RN with long-term care experience. Am I eligible for any monetary compensation for providing her with care in our home? 


Sandie from NC
A: Answered by Ethan Kassel, MSW, LCSW, C-ASWCM

There does appear to be some support out there. The link below will be a good start for you and provide information on North Carolina's Family Caregiver Support Program. Hope it helps:
http://www.ncdhhs.gov/aging/fchome.htm
 

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Q:

My Mom has always been in control of us "kids," now adults—she is 82 and my dad is 84. He has been showing signs of dementia for a few years. We just recently took the car keys away after he was lost for 4-1/2 hours. Mom doesn't drive and it was difficult getting the keys from her. We have not had him diagnosed because Mom makes excuses—“It’s not a good day to take him”—or he refuses to go. That’s #1 problem. Problem #2 is Mom is getting therapy for her back (car accident) and dad was witnessed in anger trying to shove her. My sister stopped him. There is no way she can stop him now. He is weak in his legs and arms, but she walks with a cane. Mom yells at us to leave. We won't until we see things are fine. We all live close and check all the time, however feel this has been getting worse. What do we do? Mom calls the shots, but really is not able to, is in denial about dad, and is even mad at him, says he is crazy. HELP! 


Carol from MI
A: Answered by Ethan Kassel, MSW, LCSW, C-ASWCM

This is such an emotionally difficult situation. It is clear that you and your siblings want to help and your mom’s denial is blocking you from putting together a plan that would allow them to stay at home as safely and independently as possible. There is a great deal going on and your dad does need to be assessed and may need medication. My first recommendation would be for you and your siblings to speak with someone at your local Alzheimer’s chapter. Please try this link: http://www.alz.org/gmc/. They will be very helpful with resources. Secondly, if your parents have a doctor that they trust and listen to I would reach out to that doctor—call their office for a visit. This may be a situation where you and your siblings have to schedule the appointment and take him. If he knows and trusts the doctor and thinks it’s a “routine appointment,” it will be much easier. The fact that you could get the car keys away leads me to believe they will let you do more, even if they are being difficult. I hope this helps. 

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Q:

My homebound mother who is on Medicaid and Medicare receives 24/7 in home care through her insurance company ElderPlan of NY, an affiliate of the Metropolitan Jewish Health System. However, over the last 3 year the agencies they contract with continually fall short of providing for her care as they routinely send untrained or incompetent personnel to care for her—she is on oxygen 24/7 and a bi-pap machine and suffers with COPD and a myriad of depression systems. Elderplan just cancelled their current vendor contract and hired another agency. They gave us only 3-4 days notice that new personnel were going to come to care for my mother from another agency. My sister and I have been working with the new agency to assign mom's existing aides so as to minimize the trauma and drama for my anxious mother about the "changing of the guard." Today the new aide was suppose to come to the house at 8:00 am and already it is screwed up —she never showed and thought it was 8:00 pm. Can’t go on anymore about the incompetence and lack of attention to detail with these "home health aides." HELP! 


JoAnne from VA
A: Answered by Ethan Kassel, MSW, LCSW, C-ASWCM

That is very frustrating. If you have already gone to the top management at the ElderPlan, then I would suggest you contact The New York State Office for Aging at 1-800-342-9871. Please let them know you need an advocate. I would first try ElderPlan and going to their parent company Metropolitan Jewish Health System. I hope this helps. 

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Q:

I moved back into my mom’s home to care for her and it needs lots of repairs. Where can I get help so that she can live comfortably? I feel so much stress because I am not financially able to help her to get it fixed up. What can I do to get help?


Norma from TX
A: Answered by Ethan Kassel, MSW, LCSW, C-ASWCM

You’re not alone in feeling stressed caring for your mom. Many adult children these days are struggling to make sure their parents are safe at home. There are supports out there. Please try the following:

  1. Contact the Texas Health and Services Commission at http://www.hhsc.state.tx.us/Help/HealthCare/seniors.shtml Depending on your mom’s financial situation she may be eligible for Medicaid, which would provide some help in the home.
  2. Contact the Texas Department of Aging and Disability Services at http://www.dads.state.tx.us/services/index.cfm Ask them to direct you to services and supports in your town or city. There may be social work services in the area that can help with planning. Please ask about their adult day care programs
  3. If your mom is having difficulties walking, then try to have her assessed by a physical therapist. The physical therapist can recommend the proper grab bars, shower chairs, raised toilet seats and other assistive devices that will make your mom safer in the home. A hospital bed may be appropriate and in some cases they are covered under Medicare.
  4. When you contact the Texas Department of Aging and Disability please ask about support groups for caregivers as this may be helpful to you in managing your mom’s care.
     
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Q:

My mother still lives alone with homecare assistance and I do shopping and bills. I recently had an illness, which left me unable to see her for a few weeks. My husband stepped in and did grocery shopping and she was fine, but I realized I need a plan in case of illness of myself and husband or if we want to go on vacation. I have no siblings in the area to help, only a few cousins. They would be willing to help. Where do I start?


Holly from MI
A: Answered by Ethan Kassel, MSW, LCSW, C-ASWCM

A back-up plan is very helpful so you are not stressed when you are ill and can go on vacation knowing everything is in place. Here are some things I would recommend:

  1. If you are not the Power of Attorney for your mom, please make sure that you and your husband are named. An attorney in your area can help you with that. You may want to consider adding one of your cousins as a backup.
  2. There are many grocery stores that have online ordering and delivery. Please check in your area.
  3. If your mom will allow all of her bills to go to you directly, that may make it easier. You can still review with her in person what has been paid. Paying bills directly online also makes things easier if you are comfortable with online banking.
  4. If you would like to know that you have a professional on call when you go away I would suggest contacting the National Association of Professional Geriatric Care Managers. You can call 520-881-8008 or go to the website http://www.caremanager.org/contact/ to find a professional in your area. A Geriatric Care Manager can act on your behalf if your mom has an emergency while you are away.
  5. Please look at your state’s office on aging: http://www.michigan.gov/miseniors/0,4635,7-234-43295_43600-165937--,00.html. There may be additional support services.
     
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Q:

My mother-in-law moved in with us almost two years ago when her back surgery had a poor outcome, and she suddenly needed longterm care. She has since had more successful surgery and functions fairly well, but it looks like she won't be moving back with her husband any time soon (if at all). He has congestive heart failure and can't provide care for her. Our problem right now is that she is a compulsive collector and continually brings more stuff into our home. She buys stuff online and at Walmart. She brings home paper cups and plastic bottles. She has filled up her room and bathroom with so much stuff it is very difficult to enter them and move around. Her bed is covered with stuff, leaving just enough room to sleep on her side. We have to nag her for days to make it possible to change the linens.

She and her husband live this way at home and are completely unaware that it's a problem. However, she has tripped and fallen in her room several times, resulting in injuries and bruises. She says it is because she lost her balance. She has severe arthritis and osteoporosis, and we worry that she will break a limb or damage her back again. We have tried to discuss this problem with her, but she is evasive, dismissive, and promptly changes the subject. We are concerned about safety, sanitation, and wear and the upkeep of our furnishings. We have been hesitant to invade her space and take away stuff that belongs to her. We worry about being accused of theft or elder abuse. What can we do? People tell us that she needs counseling, but she has no motivation to do so.
 


Scott from NC
A: Answered by Steve Barlam

First, you should ask: Is this new behavior or a longterm pattern? It would be important to have a medical or psychological cognitive evaluation to better understand what may be contributing to this behavior.

Regarding the various options you are facing:

If you opt to have your mother-in-law continue living with you, it would be best to engage a professional from your community who has experience with hoarding behaviors: geriatric care managers (which you can find by conducting a search using the national website: http://www.caremanager.org) psychologists, or psychiatrists. They will help you find a way to communicate with your mother-in-law, and determine how to best intervene, how to create a safer living environment using a risk reduction model, etc.

It doesn’t seem viable to have your mother-in-law move back home with her husband due to his care needs, unless she could manage in her home with an outside caregiver providing care to the husband, and keeping an eye on her hoarding behavior. Additionally engaging a geriatric care manager to oversee the care and work with professionals to try to keep a handle on the hoarding behavior would also be advisable.

Although moving to a facility doesn’t seem possible for financial reasons, if needed, you can research public benefits your mother-in-law might be eligible for. For example, VA benefits if her husband was in the military. These could help cover the cost of an alternative living arrangements.

There are also some “Do’s and Don’ts” to bear in mind as general guidelines:

Do’s:
• Be aware that there is no quick fix
• Establish a positive relationship
• Gain your mother-in-law’s trust
• Empathize – see her point of view
• Give her choices, thus helping her maintain a sense of control
• Help set goals and time frames for getting things done
• Respect her meaning and attachment to possessions

Don’ts:
• Don’t work with hoarders if you feel negatively about this behavior
• Don’t expect miracles overnight
• Don’t overwhelm or threaten
• Never remove belongings without person being present
• Don’t do a surprise or forced clean-up if at all possible


Below is some general information about hoarding behavior that you might find useful:

First from Randy Frost’s book, A Cognitive-Behavioral Model of Compulsive Hoarding

Definition/presentation:
1) The acquisition of, and failure to discard a large number of possessions that appear to be useless or of limited value.
2) The living spaces in the home are sufficiently cluttered so as to preclude activities for which those spaces were designed.
3) There is generally significant distress or impairment in functioning caused by hoarding.

Second, the diagnostic criteria of hoarding as a subset of Obsessive Compulsive Personality Disorder from Diagnostic and Statistic Manual of Mental Disorders IV:
• Accumulation of clutter
• Difficulty discarding/parting with objects
• Compulsive acquiring of free or purchased items
• Distress or interference
• Duration at least 6 months
• Not better accounted for by other conditions (OCD, major depression, dementia, psychosis, bipolar disorder)

Prevalence and Demographics:
• Prevalence in general population – 3-5%
• Underreported problem –only five percent of cases come to attention of authorities.
• Prevalence among patients with obsessive compulsive disorder is approximately 20-30 percent.
• Prevalence among patients with dementia is approximately 20 percent.
• Education – ranged widely
• Typical age of onset was during childhood or adolescence.
• Strong familial link – 80 percent of hoarders grew up in house with someone who had hoarded.

Co-Morbid Problems Associated With Hoarding
Hoarding is associated with several disorders including:
• Dementia
• OCD
• ADHD
• Depression
• Anxiety (PTSD, general)
• Schizophrenia /psychotic disorders
• Substance abuse
• Personality Disorders

Hoarding Stems From Four Types of Deficits
• Information-processing – decision making; categorization/organization; memory.
• Problems with emotional attachments to possessions – objects as extensions of oneself.
• Behavioral avoidance – excessive concern over mistakes.
• Erroneous or distorted beliefs about nature and importance of possessions.
• Perfectionism
• Need for control
• Responsibility
• Emotional comfort

Treatment Interventions
• Medications
• Psychotherapy
• Cognitive Behavioral Therapy
• Harm Reduction Model

Challenges To Treatment
• Very little data available regarding treatment outcomes with hoarders.
• Little evidence that antidepressants or other meds used to treat OCD are effective in treatment of hoarding.
• Hoarders have poor insight into nature of problem (denial).
• Motivation to change is limited and resistance to treatment is high.
• Treatment is frequently lengthy (one to two years)
• Limitations of Cognitive Behavioral Treatment Model

Hoarding In The Elderly Population
• Age-related illnesses are not primary cause of hoarding.
• Hoarding is a common symptom in dementia patients.
• Memory loss: inability to discriminate between relative importance of articles in home.
• Forty percent (40%) of hoarding complaints to local health departments involved elder service agencies.
• Self-neglect associated with hoarding.

Causes For Hoarding In The Elderly
• Compensation for loss
• Grief reaction – death or divorce
• Avoiding waste – Depression era
• Traumatic event – Holocaust
• Social isolation
• Finding security

Interventions With Hoarding In The Elderly
• Hoarding is a mental health and a public health issue
• Treatment involves:
· Mental and physical health assessment
· Risk reduction
· Treatment for identified symptoms
 

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Q:

My father insists on living in the home he and my mom shared, but he hasn't been able to take care of it on his own since she passed away. How can I convince him to get some assistance?
 


A: Answered by Steve Barlam

You are not alone! Often times when a senior is confronted with the need to accept help, this is an unwelcomed acknowledgment that he or she is compromised or not able to manage. The initial response most commonly is denial or flat refusal of the care. If the focus can be taken off of the senior and redirected onto the adult child, often success can be achieved. Such as: "Dad, while I know you are confident that you are managing fine, I am losing some sleep at night worrying about you. I wish you would consider accepting just a little extra help, which will make me feel better and less worried."

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Q:

My mom lives in my house, and I'm feeling the strain of round the clock care. How can I get help?
 


A: Answered by Steve Barlam

Respite is key...you need to take care of yourself to insure your well being physically, emotionally and socially. If something happens to you, you will be of little good to your mom! Consider arranging for a respite caregiver. This can be another family member, a friend, a neighbor or a trained professional. Think about setting up a regular schedule, during which time you can take a break without having to worry about your mother. Lastly you may want to speak with a local expert in eldercare in your community who can help you to arrange for, screen and select the right caregiver. One such resource is a certified Geriatric Care Manager (www.caremanger.org).

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