It had been 5 months since I ran an errand alone. I can't leave him due to seizures, amongst other things.
Did you know there is this thing called Shadowing? Those who suffer from most forms of dementia, such as Younger-onset Alzheimer's develop it. This is when the patient keeps the caregiver in sight at all times, often within inches from them.
Finding things for him to be involved in and intrested in while living rual has its own challenges. His younger age, his own stubbornness and comfort level, limit our option's. Even if there was a program closer than a 2 hour round trip, towards his age, Patrick would still refuse to go. That part of him is definitely still there.
They do not engage, just the opposite, they typically sit in silence, often lost within the disease, but alert enough to follow who they are focused on, just like a shadow and stare.
It can happen all day, just during a sundowning moment or not at all. It can be a few times a week or it can be everyday 24/7. As with every single thing with Younger-onset Alzheimer's or any dementia related diseases, it is random.
This can be smothering for the best of people.
Side note: Never tell a caregiver in the midst of caring for someone that one day, they will appreciate and miss the hard moments too. This may be 100% true, but I can pretty much speak on behalf of every caregiver, thev don't want to hear that as they are currently living the hardest days ever. At those moments, for me personally, I pray I forget the times I feel frustrated and I beg God to not let me remember any of the bad things as my mind clings to remember the good.
Patrick's friend lives in Colorado. He has taken a weeks vacation every year, for the last 3 years to spend with Patrick. I so appreciate that.
Something I have noticed when we have company is how much better my husband does with everything. Sundowning, temperament, coordination and speech all improve. It's not that it's not noticable, the disease forces him to still asked repeated questions within an extremely short amount of time, but as the days past, I personally noticed a difference. His mood was lighter.
I'm not his doctor, but I am his wife and fulltime caregiver, in my heart I see that depression increases the daily decline. I also notice when he is part of the conversation, he is able to verbalize his thoughts better than when he is wanting to start a conversation.
It can happen all day, just during a sundowning moment or not at all. It can be a few times a week or it can be everyday 24/7. As with every single thing with Younger-onset Alzheimer's or any dementia related diseases, it is random.
This can be smothering for the best of people.
Side note: Never tell a caregiver in the midst of caring for someone that one day, they will appreciate and miss the hard moments too. This may be 100% true, but I can pretty much speak on behalf of every caregiver, thev don't want to hear that as they are currently living the hardest days ever. At those moments, for me personally, I pray I forget the times I feel frustrated and I beg God to not let me remember any of the bad things as my mind clings to remember the good.
Patrick's friend lives in Colorado. He has taken a weeks vacation every year, for the last 3 years to spend with Patrick. I so appreciate that.
Something I have noticed when we have company is how much better my husband does with everything. Sundowning, temperament, coordination and speech all improve. It's not that it's not noticable, the disease forces him to still asked repeated questions within an extremely short amount of time, but as the days past, I personally noticed a difference. His mood was lighter.
I'm not his doctor, but I am his wife and fulltime caregiver, in my heart I see that depression increases the daily decline. I also notice when he is part of the conversation, he is able to verbalize his thoughts better than when he is wanting to start a conversation.
Finding things for him to be involved in and intrested in while living rual has its own challenges. His younger age, his own stubbornness and comfort level, limit our option's. Even if there was a program closer than a 2 hour round trip, towards his age, Patrick would still refuse to go. That part of him is definitely still there.
I had stopped driving Patrick around for a couple of reasons this past year. After he lost his license October 2018, I would spend hours driving backroads, exploring abandoned house and visiting State Parks.
It was an extremely difficult transition for us both. The emotions were at their highest.
It was an extremely difficult transition for us both. The emotions were at their highest.
In one day, out of our control, he could no longer drive or work. Imagine as a person what that must feel like? Picture you as a man, the provider not even being able to drive anymore nor work. Having your name removed from everything you worked for. Loosing your right, in the eyes of the law to make decisions. For me, as his wife it's not that I couldn't do these things, I just did them with him for the last 20 years and having to do them on my own, he had a natural resentment towards the disease, but directed at me. Totally natural. Totally sucked! Still does.
The grief and anger in Patrick would come out of nowhere. It became too dangerous to drive with him, so the drives became shorter and shorter to not at all.
The grief and anger in Patrick would come out of nowhere. It became too dangerous to drive with him, so the drives became shorter and shorter to not at all.
It seems to be settling more and more, so I think we can start that back again.
This disease is not just about forgetting.
Shadowing, anger and depression are just a few things that also develop. Yes, medications are given, but it only does so much.
What I have seen.
Seeing friends and family make a difference. Visiting those suffering is like a miracle drug for us both.
This disease is not just about forgetting.
Shadowing, anger and depression are just a few things that also develop. Yes, medications are given, but it only does so much.
What I have seen.
Seeing friends and family make a difference. Visiting those suffering is like a miracle drug for us both.
In my personal experience with Patrick, it has become the best thing I have ever seen lift his mood. He is able to keep his mistress, Younger-onset Alzheimer's under the covers a little longer. You still see her form, but she is less visible than at other times. This makes my heart smile.
I know there will come a point when I will respect my husband's wishes and close the door to visitors. I will preserve his dignity and honor everything we spoke about.
This disease is known as the long goodbye.
If you know of someone suffering from it, visit while you can. Don't put their loved ones through additional suffering by waiting until it's too late and they have to tell you no.
It will happen.
#WeWalkThisTogether #EarlyOnsetAlzheimer #YoungerOnsetAlzheimer #Alzheimer #EOAD
If you would like to help give familes like ours a voice to change the laws that are needed to help us, this is a link to the crowdfunding funding video for the documentary we are raising funds to create.
The faces in the video are just a few facing the rarest form of Alzheimer's, Early/Younger-Onset. Those diagnosed before the age of 65. There is no known cause and there is no cure.
Please help us have a voice.
Please watch and please share this post.
https://www.gofundme.com/f/we-walk-this-together?utm_source=facebook
Please watch and please share this post.
https://www.gofundme.com/f/we-walk-this-together?utm_source=facebook
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