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Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

peterson | @peterson | Jun 13, 2021

I had to put my Dad in a long term care facility because of his advanced dementia and I work as a hospice nurse. My delema is that when I take him out of the facility he gets so excited and has a good time but when I return him to the facility he gets so irate and confused. He will start to pack up his belongings and when I tell him that this is where he lives here he becomes despondent.. I hate not taking him out for lunch etc. but it is also really upsetting to leave feeling so guilty.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 13, 2021
In reply to @peterson "I had to put my Dad in a long term care facility because of his advanced..." + (show)
@peterson

I had to put my Dad in a long term care facility because of his advanced dementia and I work as a hospice nurse. My delema is that when I take him out of the facility he gets so excited and has a good time but when I return him to the facility he gets so irate and confused. He will start to pack up his belongings and when I tell him that this is where he lives here he becomes despondent.. I hate not taking him out for lunch etc. but it is also really upsetting to leave feeling so guilty.

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Hi @peterson I'm sorry to read of your father's dementia.

I'm Scott and while I know every person's journey with this terrible disease is unique, I have read, and saw in my MIL during her dementia years, that any changes in her daily routine bought greater confusion, increased anxiety, and at times a lowering of her plateau. This was especially true if the change involved moving beyond her then current physical environment.

You might well have already considered this, but might there be a spot within his facility (garden, patio, etc.) where you could share lunch with him?

Wishing you strength, courage, and peace

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1 reply
peterson | @peterson | Jun 13, 2021
In reply to @IndianaScott "Hi @peterson I'm sorry to read of your father's dementia. I'm Scott and while I know..." + (show)
@IndianaScott

Hi @peterson I'm sorry to read of your father's dementia.

I'm Scott and while I know every person's journey with this terrible disease is unique, I have read, and saw in my MIL during her dementia years, that any changes in her daily routine bought greater confusion, increased anxiety, and at times a lowering of her plateau. This was especially true if the change involved moving beyond her then current physical environment.

You might well have already considered this, but might there be a spot within his facility (garden, patio, etc.) where you could share lunch with him?

Wishing you strength, courage, and peace

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Thank you for your support. Yes there is a pretty courtyard I might just have to keep my visits there at the facility

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 13, 2021
In reply to @ganz "I did not include that after routine ct and check e/ray that he has modules on..." + (show)
@ganz

I did not include that after routine ct and check e/ray that he has modules on his lungs. They drained the fluid build up and are waiting to hear next week the results.

As far as the MCI goes he recognizes family and recalls past family events. Sometimes he walks into the kitchen and knows where things are but other times looks confused.

If we have an appointment I will tell when we have to go and when it is time to go he asks where are we going. Other times he remembers that we are going.

His motor skills are getting worse. He walks very gingerly and slow. This has been increased the last several months.

He also wears depends but our bed is wet every night.

I do not know what the progression is with MCI.

Thank you so much for getting back to me.

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Hi Ganz, I add my welcome. I encourage you to also follow this expert blog on Mayo Clinic Connect:
- Living with Mild Cognitive Impairment https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/
Mayo Clinic directors offer very useful information there and members comment as well.

You may wish to connect with other caregivers caring for some with MCI here:
- My wife forgetting: Diagnosed with MCI https://connect.mayoclinic.org/discussion/my-wife-forgetting

Each person's progression with MCI is different.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 13, 2021
In reply to @peterson "Thank you for your support. Yes there is a pretty courtyard I might just have to..." + (show)
@peterson

Thank you for your support. Yes there is a pretty courtyard I might just have to keep my visits there at the facility

Jump to this post

Peterson, Scott's idea seems to have struck a chord. I'd be interested to hear how your next lunch date goes with your Dad in the courtyard.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 14, 2021
In reply to @ganz "I did not include that after routine ct and check e/ray that he has modules on..." + (show)
@ganz

I did not include that after routine ct and check e/ray that he has modules on his lungs. They drained the fluid build up and are waiting to hear next week the results.

As far as the MCI goes he recognizes family and recalls past family events. Sometimes he walks into the kitchen and knows where things are but other times looks confused.

If we have an appointment I will tell when we have to go and when it is time to go he asks where are we going. Other times he remembers that we are going.

His motor skills are getting worse. He walks very gingerly and slow. This has been increased the last several months.

He also wears depends but our bed is wet every night.

I do not know what the progression is with MCI.

Thank you so much for getting back to me.

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Good morning @ganz We had the bed problem with my wife as well. We added a pad (provided by hospice so I don't know the brand or name) that was very thin, but worked great to keep the sheets dry most mornings.

Also in my wife's case I came to understand progression is also very different between patients plus it was incredibly uneven with her. She would plateau for differing lengths of time and then have a period of almost daily changes. Her neuro doc told us that was due to the times the synapses in her brain would encounter a new difficulty and have to find a new path within her brain to accomplish something, store memory, or how to react to something previously known.

How long has your husband been diagnosed with MCI?

Strength, courage, and peace

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marvkw | @marvkw | Jun 19, 2021

Can someone explain vascular dimentia and where it fits with alzheimers? I am caring for my wife.

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 19, 2021
In reply to @marvkw "Can someone explain vascular dimentia and where it fits with alzheimers? I am caring for my..." + (show)
@marvkw

Can someone explain vascular dimentia and where it fits with alzheimers? I am caring for my wife.

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Hi @marvkw I am sorry to read of your wife's condition. My name is Scott and while I'm not a medical professional, I did care for my MIL with dementia as well as work for the Alzheimer's Association. As I recall Alzheimer's and Vascular dementia, while different have many similar symptoms and somewhat similar progressions. However they do believe the causes of each may be different.

Do you have specific questions about either?

Wishing you strength, courage, and peace

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1 reply
marvkw | @marvkw | Jun 19, 2021
In reply to @IndianaScott "Hi @marvkw I am sorry to read of your wife's condition. My name is Scott and..." + (show)
@IndianaScott

Hi @marvkw I am sorry to read of your wife's condition. My name is Scott and while I'm not a medical professional, I did care for my MIL with dementia as well as work for the Alzheimer's Association. As I recall Alzheimer's and Vascular dementia, while different have many similar symptoms and somewhat similar progressions. However they do believe the causes of each may be different.

Do you have specific questions about either?

Wishing you strength, courage, and peace

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This is a quote from Mayo Clinic relatve to my question:But vascular dementia can also develop very gradually, just like Alzheimer's disease dementia. What's more, vascular disease and Alzheimer's disease often occur together.

Studies show that many people with dementia and evidence of brain vascular disease also have Alzheimer's disease.

This is just not clear to me as vasc and az seemed to be mixed up. My wife has been diagnosed as vascular dimentia. As the progresion of az is different, I wish I could understand if she actually has az or that she may regress into az?
Thank you. Marv W

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 19, 2021

@marvkw As far as I know, there are no tests for Alzheimers vs. other forms of dementia in living patients. I know every patient and their journey are unique so I only offer my observations. Many of the symptoms of one are the same, or similar to, the other. I think that could be why the medical community tends to use the broader ‘dementia’ term with these diseases and others such as FTD, etc. My MIL had FTD, which only really differed from Alzheimers in its earliest stages in her.

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