A lot of people are afraid of dementia, whether it be Alzheimer’s Disease, Parkinson’s Disease Dementia (my husband Anthony’s type), or other variations. It isn’t just the fear of developing the disease one day, it is also the fear of anyone who has the disease.
As someone who worked in nursing homes for many years, dementia doesn’t scare me at all but I guess, if you haven’t had that kind of experience it could be scary visiting a loved one who used to be the life of the party, or extremely energetic, or with a dry, sarcastic wit (Anthony) only to find them either silent or saying what sounds like nonsense.
But it’s not that scary once you get used to it – it’s not! You learn how to listen differently, you learn how to be comfortable with silence, you learn how to love the person again for what he or she is now, instead of pining for an impossible past. You learn to be unafraid, you learn how to give, you learn how to go with the flow, you learn how to treasure each and every moment no matter how bizarre or strange.
“I just want to remember him/her the way s/he was” is a common sentiment expressed by friends and family of people with dementia and this is understandable, yes, but it is also cruel and selfish and horrible because people with dementia are not dead. People with dementia might be confused, cognitively, but there is nothing confusing about the emotional need to be hugged or acknowledged or visited. Why is this so scary for so many of us?
Before this happened to Anthony, and despite my nursing experience, I, too, found it incredibly difficult to visit people I knew who had developed dementia on top of everything else they were already suffering. Can you imagine how terrible it would be to be so sick, so confused, and then abandoned?
There are not too many visitors at the nursing home where Anthony resides and, when I was a nurse, there were very few in the three nursing homes in which I worked. Loneliness is universal and has nothing to do with age or dementia. People with dementia are lonely; people with dementia are human; people with dementia are often aware of the dementia and need comfort and reassurance, or just a hug. A 5-minute visit is enough to make a bad day good.
This is not about Anthony exactly because he gets a lot of regular visits from family and friends but, because I am in there nearly every day, I see the blank, lonely expressions on many of the other residents’ faces and have now made friends with several people there who never seem to have a visitor. I have also made friends with the relatives who do visit but we are a tiny group.
And the point of this little rant? If you have a friend or relative with dementia, please don’t abandon them. They need you. If they don’t recognize you, so what? Just give that person a hug or a pat on the shoulder and then you can go back to your life knowing that you will probably have made that person’s day shine!
BTW dementia is NOT contagious! (Anthony said that to me today).
jmgoyder 
You have such a big heart, Julie.
Anthony told me that one of the residents sobbed loudly all night the other night – unbearable to think of such loneliness.
It truly is….
I hope people see this.
I think the neglect of the elderly is endemic to western culture but I guess that is a bit of a sweeping statement!
I work in the field of protecting the elderly. And sadly, I work in this field because of the neglect there is. đŚ But, I have to also say I have met fabulous people of EVERY age doing all they can for the elderly. I have seen some incredible care and acts of goodness.
I was having a pessimistic day (another one!) but you are right – there are angels everywhere thank goodness and you are one of them!
I’m pretty sure your Anthony sees you as his guardian angel. Not to mention the other folks you have taken under your loving wing. đ
One does not understand unless one has been through it with a loved one.
I understand.
Thanks and I know how much you understand.
You are wonderful…through your eyes, your heart, and your words, you show what is real and what we can so easily do, in our own small way, to help make the world a better place. One hug or pat at a time. Thanks for sharing this Jules…no, better…thanks for living it and leading by example…xoxo
I know that for Anthony a 5-minute visit is enough.
Unless it’s me then a 5-hour visit isn’t enough ha!
What a great reminder to so many who are afraid of anything out of the normal. Everyone has feelings and a heart!!!!!
The elderly and the ill become invisible don’t they – it’s horrible.
yes it is most definitely
I remember those days as if they were yesterday – visiting my dad and seeing so many people without visitors or conversation other than the occasional chat from a nurse or aide. And when my dad became aphasic, I still talked with him, read to him, shared jokes…And though I ached each time I left, I felt far worse for these people who were treated as pariahs by the people they used to know.
I definitely think it’s mostly fear – dunno.
I think you’re probably right..
And the other thing… people get to let go of the things they did that hurt eachother because… no one remembers them! Only Love remains. đ
Your heart is so bright and shiny Julie. Anthony — and all the other patients at the care centre, are blessed with your presence. Giving is receiving and I’m sure in giving your time, you receive the gift of Love from everyone. Hugs
Sometimes I think my frequent presence at the nursing home irritates the staff – not sure! I often come armed with chocolates.
A post that needed to be written Julie! I love that Anthony said that. Hugs to all 3 of you!
I just realized that I misquoted him – he actually said “I’m not contagious” which is even more sad.
Aww.
This is so true Julie… when we go to visit my Mom in the old age home, I make a point of chatting to all I see, some have not seen hide nor hair of the children in years and this is tragic… it is always quite funny when I go to chat to an old gentleman 90 years old been deaf all his life but lip reads perfectly, now being very deaf myself I also lip read, yet I stand without thinking shouting at him as if after 90 years he will suddenly hear me… it must look funny though when I stand and chat with him only mouthing the words with no sound… people must look oddly at us… but it is not surprising that they all want to chat, locked up with no one visiting the do enjoy a conversation with someone they don’t see every day…
You are a good man bulldog (and very funny!)
Well said Julie. đ
Hope so!
This is so true, Julie. One thing I noticed with my mom – it was like she was invisible and we talked around her. She was mute or babbled. But now I realize that she actually understood much of what was talked about. She just couldn’t find the words to respond. For sure, she knew how loved she was and Anthony feels that. His frustration must be so hard to watch; dementia is cruel! You are such an angel.
Yes and with PDD it is impossible for the person to focus on more than one thing, person, topic, but, like your mom did, he loves the company. Thanks Judy.
Julie, I want to give you encouragement today because it takes special people to work in nursing homes and also to have a spouse or close family member be in that situation. I admire greatly you and all others who choose that career. You are the angel that helps them through to their final hours. Though dementia may seem like a fearful disease for anyone, I wonder sometimes if being unaware is not more of a blessing for that person who isn’t aware that there are no more visitors or family to come calling…..just so hard to comprehend that kind of loneliness. The hardest part seems to be for the family and friends. Anthony is very blessed to have you in his life as are all those whose lives you touch everyday, mine included. Love and blessings to you dear friend.
I think you are absolutely right about unawareness being a kind of blessing and so far I have noticed that the more confused Ants is the less distressed he is (about not being home etc.) Thanks for such a thoughtful comment – I really appreciate it.
Julie, Until I started following you I had very little real knowledge of dementia or Alzheimerâs. I had a taste, when a stroke put Mom into a nursing home, and began suffering from Alzheimer’s as a result of the stroke. To see you love as you do, to see you care as you do, I know Ants is a fortunate man. Because of your story and you influence, I know I will learn more and be less leary or afraid of those that suffer. Kinda like having to interduce myself to Mom at the beginning of each visit without sayin “Hi Mom, I’m your son Bill.” Take care, your Friend — Bill
Thanks Bill – your ongoing support and wisdom is fantastic! Jx
People so need to realize what you’ve said… When my Mom was in the nursing home I became painfully aware of the abandonment issues for these dear people… One day I wrote a letter to the editor of a newspaper about this.. especially motivated because the day before when I was leaving the home there was a dear sweet lady sitting at the entrance clutching her dress to her chest and weeping… She left such an imprint on me I felt somehow I had to do something… As you say all they need is for you to ‘be there’ and a hug…smile …watch tv with them maybe… just ‘ be there’….. Diane
Oh what you said about that lady weeping broke my heart!
Your post is so important and necessary. I think that for many, being around those with any type of dementia, frightens them because that may be a glimpse into the future for them and it may be too hard to handle. There is still so much that we don’t know about these illnesses. You have the biggest heart and what you do with your writing is so very important, giving a voice to caregivers and the patients. You are wonderful. đ
I think that as a visitor to the nursing home (rather than a nurse) I am seeing things I didn’t see before – mostly stark loneliness.
There are a lot of people out there who need to read this. Thanks for writing it.
I just wish people wouldn’t be so scared to visit people in nursing homes. We have several friends who will not go to see Ants unless I am there too.
It is a grave and costly error to abandon those who are sick, both for the one who is lonely and in need of comfort, and the one who “wants to remember that person the way he/she was.”
Honestly, I have very little understanding for the people who do the abandoning. I witnessed my huge extended family’s abandonment my great-grandfather–I was one of a handful, out of 50 or more children/grandchildren/great-grands, who visited him regularly during his 4 years of confinement while the others begged off with the feeble excuse of not being able to stand seeing him that way, preferring to remember him as he was. It still makes me angry today. I was only in my twenties, one of the very youngest of the clan! But I understood that there is something quite terrible about choosing to “remember” a person who is still alive. It’s a type of willful murder of the spirit, I think.
But then perhaps I’m being too harsh on them. I, too, had worked in a nursing home–it was my first job (when I was 14). So perhaps I learned compassion for the infirm, and found a way to be comfortable with people who are wracked with physical & emotional pain, and/or out of their senses. On the other hand, there’s also that dreadful story about the last judgement, when those who did not visit the sick are locked out of heaven–and it’s called divine justice. But those who did the visiting, are rewarded with great blessing. People might consider that there actually is a tangible reward in considering someone else’s needs as more important than their momentary discomfort.
Sorry to rant–but you always make me think about, and want to speak to, important things!
I’d forgotten about that story of the last judgement – your comment is beautiful and I agree with everything you say.
Great post! While Anthony is going through a horrible and terrifying thing, he is very lucky to have you by his side. I feel so bad for all the people who don’t get any visitors.
And with the aging population increasing it is so sad.
very well stated, julie. i went through this with my mother and learned so much. one of the hardest things to learn was to not take things personally and to learn to embrace where she was currently as opposed to the past.
Absolutely!
That part, where you wrote ‘ it is also cruel and selfish and horrible because people with dementia are not dead’ broke me to tears.
What a cruel irony, to have your mind abandon you and to also be abandoned when you most need love, reassurance and support.
You are such an insightful and caring soul.
I’m glad Ants still has you.
Big, big hugs, Nicole xx
Thanks Nicole. It has been interesting to see who does and doesn’t visit Ants. It’s not that I am monitoring this exactly but very awkward to have to ask people to visit him (which I don’t do any more) as for many it’s as if he is already gone. Hugs back – Juliexx
This is such a good post, Jules. I remember when my mother, who had Alzheimer’s, was near the end and sat idly in her chair looking out into space smiling. On one particular day I whispered to her, “I love you” and she responded with clarity and lucidity, “The feeling is mutual.” She’d been ostensibly “gone” for months and then this. It was as if she came back in a way that communicates with heart to say thank you for all the visits and care while I was drifting away. I never minded just sitting there with her, having a meal, or staring at the TV. There was just something about being with her, about her being alive on this earth that I valued. Reading this from you just reaffirmed what I felt in my heart, that she knew I was there all along, loving her. Thank you.
What a beautiful experience Paulette – thank you so much for sharing this. Jx
That is what my uncle says he would rather remember nan like she was, well I do remember her like she was but I also see her how she is now, and I have learnt to listen and most of the time I understand what she is trying to say. I always wondered how I would cope with someone who had dementia I guess only time will tell how one copes.
You have so much wisdom!
Can you hear me cheering? đ I’m so glad you said this.
Those in care homes don’t have to have dementia to be ignored and ‘warehoused’. I saw this all the time when I went to visit with Bob’s father, and later his mother. Whatever the infirmity it is guaranteed that most in the care system have simply been warehoused. This shouldn’t happen to anyone. Again, thank you, Julie.
‘Warehoused’ – exactly!
What a lovely post. I think it is so important is to always treat the dementia/AD patient with dignity. They are losing memories and capabilities. They are not stupid. Lots of love and a hug from me to Antz.
Thanks so much Tersia and you are so right!
Reblogged this on hometogo232 and commented:
I hope that you take time to read this… I wrote a newspaper editorial many years ago when my own mother was in a nursing home. … I was so motivated to do so, because when leaving the home one day, at the front entrance there was a dear lady sitting there clutching her dress to her chest and dabbing her eyes…. ‘waiting I would imagine to see if there would be someone walk through that door to see her’ Maybe someone’s heart will be stirred to go and see someone they know (or don’t know) … Diane
Thanks Diane!
I read a good memoir on this topic: To Love What Is by Alix Kates Shulman. (I think I have that right.)
I’ll have to look that book up! Thank you.
I don’t think it’s just dementia. When John’s mom was in a nursing center for 12 years, I visited her every Thursday. On days I took our girls, residents would line the hallway to touch them. The first time was a little unnerving, but then the girls would stop and stay a second or two with each of them. These people were just old…and abandoned. It was sad. Sometimes, I think it’s our mortality and fragileness we try to avoid. That’s when I’m feeling generous. Other times, I think people just don’t want to be bothered. I try to stay in my generous mode, most times:)