1. < Caregivers: Dementia

Quite a week for wife, diagnosed with Alzheimers and Parkinson

Posted by geppetto @geppetto, Feb 23 10:08am

Tau plasma blood test showed Alzheimer's "present". Then DAT scan show suggestive of Parkinson's with Luey bodies. Should be quite a journey! Already forgetting to shower, speech is beginning to slur and walking gate is noticeably slower and deliberate.

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maryvc | @maryvc | Feb 26 6:55am
In reply to @geppetto "She has more good days than bad. Trying to keep the exercise going (walking about a..." + (show)
@geppetto

She has more good days than bad. Trying to keep the exercise going (walking about a mile almost every day) and exercising her brain with card games and yahtzee. Outside of that, she is not very engaged.

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Cherish those good days and smile for those miles. Exercise is the best medicine as long as possible.

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geppetto | @geppetto | Feb 26 8:20am

Thank you, is is a struggle as very overweight and typically wants to do nothing but watch TV.

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tullynut | @tullynut | Feb 27 2:43am

My mom had dementia. In hindsight, it as developing a good 10 years before we realized what was happening and my dad was still around so he was able to buffer things, handle bills, etc - all seemed "the same" for a long time. After he passed, it was quickly evident something was amiss with mom. I took care of her in my home for about 3 very long and difficult years. She then moved to an assisted living for about 1 year and then to a memory care facility for about a year before she passed away. In hindsight, placing her in a facility with various levels of care would have been the better option for both of us. There are 4 of us kids. My older sister, age 75, has dementia. My younger brother has dementia - started out parkinson like, not so for sister. My youngest brother and I (ages 68 and 73) continue to show no sign of dementia, but who knows. My parents both lived into their 80's to early 90's. Mom had dementia probably from her late 70's to early 80's; my dad passed of heart disease but was mentally intact. My sister showed signs in her 60's; ditto for brother. It seems to me that the incidence and prevalence of this horrific disease is showing up MORE and EARLIER, but maybe that is just increased awareness with earlier diagnosis? IMHO I think the disease (or our generation) has either morphed into something bigger/worse OR our generation has developed or been exposed to who knows what that triggers it at an earlier age. Facilities to care for our loved ones are GOLDEN, but costly. sigh. Blessings to EVERYONE out there.

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celia16 | @celia16 | Feb 27 4:48am
In reply to @greff "I feel for all of you who posted on this thread. It saddens me to hear..." + (show)
@greff

I feel for all of you who posted on this thread. It saddens me to hear your struggles and grief.
My wife was diagnosed with Lewy Body Dementia just over 6 years ago at the age of 54. Initially, they thought she had early onset Alzheimers but began showing the combination of early onset Alzheimers and Parkinsons at the same time. I took care of her 24/7 for the past 5 1/2 years but my poor honey got to weak and confused to allow me to provide showers and other crucial personal hygiene. My plan was to take care of her until Jesus took her home. I remodeled our home to accommodate for her handicap (adjustable bed, handicap shower, etc). Little did I know that even with all of those things in place, her care would be more than I could handle alone. I made the decision to have her placed in a nursing home (also at the recommendation of her neurologist ) that is located in our small town. It is absolutely wonderful. Even though my guilt of not getting the job done by taking care of her myself, often plagues me. We have four adult children who live close enough to see her on the weekends.. We are truly blessed. I'm just rambling here but I just needed to share. Not many people who a person can turn to who truly understands. Thanks for allowing me to post. This disease so debilitating and relentless. It is the longest good bye I have ever had to say to a loved one. And yet, in God's grace and mercy, I am able to see her right away in the morning and feed her breakfast. Then see her in the afternoon and stay to feed her supper. Statistically, Lewy Body Dementia is very progressive and most pass away from 5 to 7 years after diagnosis from what I've learned. Having said that,.this might be my wife's final year on earth. I am thankful for the 40+ years God has given me and my children.
I pray for all of you. I hope your journey has beautiful memories that you can make. Ours did.
God bless.🙏
For all of you full time care givers - give yourself breaks. Ask for help. Otherwise, you will become overwhelmed and exhausted. At least that's been my experience.

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What a lovely tribute to your wife. When her neurodivergent recommended the nursing home, what were her needs, such as did she need hand feeding, have incontinence, immobile, etc.?

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1 reply
greff | @greff | Feb 27 7:22am
In reply to @celia16 "What a lovely tribute to your wife. When her neurodivergent recommended the nursing home, what were..." + (show)
@celia16

What a lovely tribute to your wife. When her neurodivergent recommended the nursing home, what were her needs, such as did she need hand feeding, have incontinence, immobile, etc.?

Jump to this post

My Punkin could no longer feed herself, which was ok cuz I was feeding her for the most part anyway. Her cognitive declined required several medications. She became incontinent, which I was also able to clean her up. However, her confusion and resistance to me helping her (primarily because she couldn't figure out why I was helping her, or who I was) made things difficult. The combination of my wife's inability to remember, reason, and function became too much for me to care for appropriately. As I am writing this post, I am with her at the nursing home getting ready for breakfast. She can no longer walk without two assistants helping her, and still can only walk about 30ft with difficulty. It won't be much longer and she will no longer be ambulatory. Lewy Body Dementia is so progressive that it seems like a whirlwind sometimes. I'm just thankful that she is happy when I see her. She may not know the nature of our relationship, but she still has a strong love for me. It is so wonderful. I thank God daily.

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1 reply
1995victoria | @1995victoria | Feb 28 11:19am

May your journey bring you kind memories and peace

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1 reply
celia16 | @celia16 | Mar 1 5:25pm
In reply to @greff "My Punkin could no longer feed herself, which was ok cuz I was feeding her for..." + (show)
@greff

My Punkin could no longer feed herself, which was ok cuz I was feeding her for the most part anyway. Her cognitive declined required several medications. She became incontinent, which I was also able to clean her up. However, her confusion and resistance to me helping her (primarily because she couldn't figure out why I was helping her, or who I was) made things difficult. The combination of my wife's inability to remember, reason, and function became too much for me to care for appropriately. As I am writing this post, I am with her at the nursing home getting ready for breakfast. She can no longer walk without two assistants helping her, and still can only walk about 30ft with difficulty. It won't be much longer and she will no longer be ambulatory. Lewy Body Dementia is so progressive that it seems like a whirlwind sometimes. I'm just thankful that she is happy when I see her. She may not know the nature of our relationship, but she still has a strong love for me. It is so wonderful. I thank God daily.

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Thank you for sharing. The progressive is astounding. Her age so young. You are amazing. Deep inside you know she senses who you are. At least that’s how I think. Sending warm wishes for your comfort.

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1 reply
jimdianne | @jimdianne | Mar 7 7:18am
In reply to @greff "I feel for all of you who posted on this thread. It saddens me to hear..." + (show)
@greff

I feel for all of you who posted on this thread. It saddens me to hear your struggles and grief.
My wife was diagnosed with Lewy Body Dementia just over 6 years ago at the age of 54. Initially, they thought she had early onset Alzheimers but began showing the combination of early onset Alzheimers and Parkinsons at the same time. I took care of her 24/7 for the past 5 1/2 years but my poor honey got to weak and confused to allow me to provide showers and other crucial personal hygiene. My plan was to take care of her until Jesus took her home. I remodeled our home to accommodate for her handicap (adjustable bed, handicap shower, etc). Little did I know that even with all of those things in place, her care would be more than I could handle alone. I made the decision to have her placed in a nursing home (also at the recommendation of her neurologist ) that is located in our small town. It is absolutely wonderful. Even though my guilt of not getting the job done by taking care of her myself, often plagues me. We have four adult children who live close enough to see her on the weekends.. We are truly blessed. I'm just rambling here but I just needed to share. Not many people who a person can turn to who truly understands. Thanks for allowing me to post. This disease so debilitating and relentless. It is the longest good bye I have ever had to say to a loved one. And yet, in God's grace and mercy, I am able to see her right away in the morning and feed her breakfast. Then see her in the afternoon and stay to feed her supper. Statistically, Lewy Body Dementia is very progressive and most pass away from 5 to 7 years after diagnosis from what I've learned. Having said that,.this might be my wife's final year on earth. I am thankful for the 40+ years God has given me and my children.
I pray for all of you. I hope your journey has beautiful memories that you can make. Ours did.
God bless.🙏
For all of you full time care givers - give yourself breaks. Ask for help. Otherwise, you will become overwhelmed and exhausted. At least that's been my experience.

Jump to this post

Your story brought a tear to my eyes. You are a great man and husband.

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1 reply
sillyblone | @sillyblone | Mar 7 4:23pm
In reply to @celia16 "I have read that the rate of progression varies with both of these conditions. My dad..." + (show)
@celia16

I have read that the rate of progression varies with both of these conditions. My dad has Alzheimer’s and it’s gone very slow. After at least 12 years and he still has periods of time that you can hardly tell.

Ref. Parkinson’s….i’m not familiar with it. I knew someone who had been diagnosed many years ago, but haven’t seen him in years. I sometimes wonder how he is doing. He seemed to be working after 15 years after diagnosis. Does it ever take a pause?

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It depends on when you are diagnosed. It really is a movement disorder. It is a slow or fast for some. Some do very well with treatment . The medication starts not working the same. They can be combative, belligerent and say horrible things to the person that is doing the caregiving. Name calling can be frustrating. I try to change the narrative. Sometimes it works and not so well at other times.LBD
has not happened yet and I hope it never comes. It's a hard life.

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