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Re: Communicating with a dementia patient

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@sh7199670 wrote:

That was very helpful. My sisters and I are experiencing the same symptoms that many of you have mentioned with my mother and it’s been difficult adjusting. It’s only been a couple of years but I noticed the decline increases whenever there’s a change in routine. My sisters and I take turns caring for her in her home but I’m beginning to think that it would be best for one of us to either move in with her permanently or move her in with us. Stability seems to be what she needs more than anything since shes afraid and suspicious of everyone.  Only problem is one sister lives with her but doesn’t feel that she should carry the hold load so she leaves. I live in another state and come back and forth because I take care of my disabled child as well. I wouldn’t mind taking my mother but that would mean another drastic change for her. Then the other sister still works full time which makes it impossible for her to do it. A care facility has been out the question until recently but emotionally very difficult to initiate. I’m at a lose. Just venting. 


Vent away, SH

 

Whatever Amy G says is golden, so consider her advice.

 

I'm thinking about the family dynamics here. Various siblings have varioius burdens. More or less income. Physical distance from her. Job responsibilities. So, what if you all had a family meeting. Some weekend when you all can visit her, and have a discussion. If one of you has a lot more money than the others, how about if she contributes income to pay for an aide?  How about taking turns? Some full time jobs have generous leave packages. All possibilities should be on the table. No excuses, just join in as a group of people who care about her.

 

Another thought: has she been given an anti psychotic like haloperidol? it's been around forever and it sometimes reduces that paranoia and suspiciousness that dimentia brings. At the least, her primary care provider should be assessing her mood and her paranoia. Better living through chemistry, I always say. We don't want to overmedicate her ever, but, it is worth the trial and error to find a medication that will make her less paranoid, and perhaps, less agitated anxious and depressed.

 

As for stability, yup that would be ideal. It might not be achievable, perfectly. But if all of you work as a team, and tell her, hi mom, this is the calendar, it says right here that it's my turn to spend the weekend, with you. So! What shall we do today?  You can distract her from the changes with a cheery mood yourself, and orienting her gently.

 

If all of you decide she can't stay at home or anyone's home, check out "A Place for Mom" and see what they suggest. They are free on the phone advisers and they are really good at what they do. She might be eligible for some help, too. Does she have a fair amount of savings? And eldercare attorney will help you all plan for her care and cost out your/her options.

 

What do you think?

 

Jane

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Re: Communicating with a dementia patient

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@sh7199670 Some forms of dementia progress very gradually, so you'll need to find services and support for your parent that will change over time as his/her needs change. My Dad had Alzheimer's for 12+ years and he was still quite independent in the early years, but started needing help managing finances. Eventually we asked him to stop driving. Later he had trouble figuring out how to make the coffee, then trouble with taking his medications. Eventually we had to pick out his clothes for him but he could dress himself. Eventually he needed help doing everything. So the help/support your loved ones needs kind of depends on where they are in the progression of dementia.

 

Safety is always a top priority, so you'll want to be aware of an risks for getting lost, leaving the stove on, taking the wrong medications etc. 

 

A good place to start is AARP's new Community Resource Finder. AARP has partnered with the Alzheimer's Association to offer this free resource finder so you can connect with services, events, housing and more - all in your local community. 

 

If you go to the Community Resource Finder and click on "Community Services", and then click on "area agency on aging" you can learn how to contact your local agency and they are also always a good place to start finding out what's available in your area. 

 

Hope this helps! Please let us know if you have any further questions! 

 

Take care,

Amy Goyer, AARP's Caregiving Expert

Author, Juggling Life, Work amd Caregiving 

Take care,
Amy Goyer, AARP Family & Caregiving Expert
Author, Juggling Life, Work and Caregiving and
Color Your Way Content When Caring for Loved Ones

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Re: Communicating with a dementia patient

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@tp11043557 I’m so sorry to hear of your dad’s challenges. Do you have a diagnosis of a specific type of dementia? The reason I ask is because some types of dementia present with more symptoms like this - personality changes, anger, using language they wouldn’t normally use in the past etc. 

 

In terms of behavior management, try to think of the behavior as anxiety. Everything in his world is changing and he can’t quite figure it out and he feels very insecure. For some types of dementia, paranoid thinking comes along with it also. Think about what he must be feeling and validate HIS feelings and thoughts rather than trying to correct him or “bring him back around to reality”. Naomi Feil wrote a book about Validation Therapy many years ago and I received training from her back in the 80’s when I worked in adult daycare and nursing homes. Basically, you try to join the person in his/her reality and validate their feelings or thoughts. Then try to divert there attention elsewhere. 

 

So, for example, if he accuses someone of stealing, you might say, “I know your money is very precious. We wouldn’t want anyone to steal it for sure. I can imagine you’d feel very upset if someone stole your money.  You worked hard for your money didn’t you?” Try to engage him in a conversation about money, work etc. or you might say, “Here’s your money” and keep a coin purse with coins in it that he can count (or dollar bills or you might even try fake money from a game). It’s important to try to keep him busy - folding towels, sorting things, etc - to occupy his mind and body.

 

Teepa Snow has a great website and lots of practical advise and videos about how to handle dementia behaviors in a positive way - check her site out! 

 

Hope this is helpful. My Dad just died two months ago and he had Alzheimer’s for 12+ years. When he got anxious I did a lot of things to calm him - distracted him with music (he loved to sing), gave him a hand, neck, shoulder massage, diffused lavender essential oil etc. You might try some of those things - when is he the most relaxed?

 

Let us know how else we can help! 

 

Take care,

Amy Goyer, AARP’s Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving

Take care,
Amy Goyer, AARP Family & Caregiving Expert
Author, Juggling Life, Work and Caregiving and
Color Your Way Content When Caring for Loved Ones

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Re: Communicating with a dementia patient

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  • How do you go about finding the right care for your parent with dementia?  What do I look for?  
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Re: Communicating with a dementia patient

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That was very helpful. My sisters and I are experiencing the same symptoms that many of you have mentioned with my mother and it’s been difficult adjusting. It’s only been a couple of years but I noticed the decline increases whenever there’s a change in routine. My sisters and I take turns caring for her in her home but I’m beginning to think that it would be best for one of us to either move in with her permanently or move her in with us. Stability seems to be what she needs more than anything since shes afraid and suspicious of everyone.  Only problem is one sister lives with her but doesn’t feel that she should carry the hold load so she leaves. I live in another state and come back and forth because I take care of my disabled child as well. I wouldn’t mind taking my mother but that would mean another drastic change for her. Then the other sister still works full time which makes it impossible for her to do it. A care facility has been out the question until recently but emotionally very difficult to initiate. I’m at a lose. Just venting. 

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This is great thank you!
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Re: Communicating with a dementia patient

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Family members may become worried or disturbed when their loved one with dementia exhibits behaviors that are "embarrasing" or unlike their previous self. 

If you senior loved one lives in a senior community that cares for individuals with dementia, most behaviors will not appear unusual or embarassing. It is very important to choose the correct community when looking for a home for a senior with dementia. If your loved one lives in such a community, you may still feel embarrassed. Try not to compare your loved one to their former self. An individual with dementia may exhibit behaviors that involve cursing, yelling, i removing their clothes, eating with their hands, repeating sentences, or acting childlike. In most cases, the staff will not be thinking about asking your loved one to move. Ask the staff for assistance and advice. Look around the senior community and you may see other individuals with dementia exhibiting similar behaviors. Continued success on your caregavirng journey

Dr. Marcy

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This is just the type of situation I experienced today. My mother lashed out at some of her neighbors in her senior apartment complex. She said that she told them that she didn't care if they reported her to the office manager because she was eating in the lobby. I said, "Can you just go into the Community Room where they have tables?" She hangs up when I don't tell her what she wants to hear. I wonder if her behavior will cause her to have to move. There is a section in their lease that mentions something about being loud in the lobby.

 

cj8892

Mauvee
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Re: Communicating with a dementia patient

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I learn from experience.I was 16year old first been caregivers to both of our parents. The first one I took was our mother she had asthma and diabetic. Our mother said me to take of her husband and I said ok .and our mother said to me .youare my little nurse.atfer that our mother pass away when I was 21 and I kept promise to take care of our father. Our mother pass away at age 59.I was 21 take care our father as he got older in 70 later years he have stoke .one day he call me Olivia that our mother name. I ask our father why you call me Olivia do you know who I'm .our father said I know who you is ,and I as our father what my name me Ree.and he said your mother name you Ree that my nickname and he was right .and ask him why you call me our mother name he told me you remind of your mother .you look like your mother.that's what last time he die that years pass way .when I was 39 year old .our father pass away at age 79. I'm so very very very happy it I was their caregiver for our parents

 

 

 

 

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Re: Communicating with a dementia patient

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@rc49913589 wrote:

I learned at a seminar to wait for a response before asking another question or making another statment.   In the late stages of dementia, the person said to carry a 90 second (seems forever) timer and literallly wait that long for a response. 


Excellent advice. Wait, and repeat. One instruction at a time. "Put on your coat."  "Go ahead and put on your coat."  "Time to put on your coat."   Instead of "Put on your coat and get into the car now, okay?" 

 

Patience....

 

Jane

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