Hi Everyone,
Several kind friends have asked how my mother is faring, after we had her wonderful wake, she is still with us, but she has come to a new crossroads. She has lost a great deal of weight in the last few months and spends most of the day in bed. Our previous visits were filled with chatting, catching up on stories and talking about the news. Now, I often come to visit with my mom and she is sound asleep. But I stick around, knowing that on some level she knows I’m there.
The first time this happened it was a pretty big shock. Usually, no matter if she is asleep, she would waken when I spoke to her, I would ask her how she felt and she said, “I’m better now that you are here.” So that day when I came in and she didn’t greet me, it felt like a blow. She is still alive, but she is not the woman I’m used to seeing.
I sat with her, holding her hand, as tiny as she is, she still has a strong grip. That is the strength I draw on as I sit with her. She is in no physical pain, she is clean and kept comfortable, and I can’t say enough about the staff at Hale Ku’ike. They are taking such good care of her.
For anyone reading this who is looking at the prospect of taking care of a family member with either Alzheimer’s, Parkinson’s, or advanced dementia, I recommend that you look into places that offer Memory Care — and do it soon. These are medical professionals who understand the process involved with caring for these patients. And when people tell me, “Oh we’ll take care of mom at home” my answer is “I don’t think you understand what you are in for.”
Being the primary caregiver for a patient with memory challenges is one of the most stressful situations you will ever face and as much as you love your family member, you must also be brave enough to love yourself. Know your limits, know what you can and cannot do and do not for one minute feel an ounce of guilt when it is time to call for professional help.
Having my mother at Hale Ku’ike allows us to really enjoy our time together. When she lived with me at our home, there were times when we were both so frustrated with each other. We were aware enough to know that the disease was to blame, but you don’t want to be angry with each other as the disease progresses, you really don’t.
On that day when mom didn’t wake up during our visit, I left her with a hug and a kiss and got in my car to drive home. I have my iPod set on shuffle and Robert Palmer’s song, “She Makes My Day” came on. The first few verses go:
If feel so lucky loving her, tell me what else is magic for, she thinks it’s better left unsaid. She makes her mind up at a glance,it really made a difference, I seem to be unconditionally hers. She’s like a new girl every day and all the rest don’t bother me, I’m far to busy loving her.
I’m far to busy loving her, in her time at her pace. I’m the luckiest girl around.
Rachel, your experience and the expression of it here will bring guidance and comfort to many people…and most of all, courage to take the steps necessary to take when the time comes, for everyone’s sake.
Thanks so much Dana. It is a tough subject, but if I can offer some advice for those facing this, it is to get help, and don’t feel guilty about it! Thanks for stopping by.
Lovely essay, Rachel, and you said it just right. You will never regret this time that you are spending. Make sure to replenish all the love you are giving to her with lots of loving things for yourself. 🙂
Hi Connie! So nice to hear from you. Yes, I am doing good things for myself, it is essential. It includes hanging with friends, the local theater scene and hearing from pals like you <3
Dear Rachel,
Such an honest and beautiful piece of writing.
If your loved ones are well cared for, clean and comfortable you can’t ask for any more. Sleeping is sometimes a lovely way to see “quiet time” being taken. It’s peaceful and calm during the struggles in life.
I used to sit and watch my mum and think how stress-free she looked.
Jess x
Hi Jess, I thought about you and your lovely mum. I know she was lovely, even though I didn’t get to meet her, you spoke about her in such a kind and loving way. XXXX
Thank you Rachel. Had a few tears reading this….. Just passed through the firsts of everything – very strange, but thankfully no regrets or what ifs. We made the very most of our lives together which is the main thing, as you clearly do with your mum, bless you.
Xx
Beautiful and an Inspiring Message, Rachel, for those of us who have experienced or may experience a similar siruation. My mother passed a few years ago in a similar situation, and I felt that even though she wasn’t in her body, she was still with me and still is with me to this very day. She loved birds and when I’m down or frustrated a bird seems to come near me. Real or not real, it is, nevertheless, quite reassuring and very welcome.
Ed
Hi Ed, So nice to hear from you. I’m sorry to hear about your mother but it’s good to know that she is “still with you.”
Thanks for sharing about your Mom and what you’re going through. Beautiful slow transitioning I think. She’s so lucky to have you.
I’ll be going to live with my 95-yr-old Dad for awhile (just spent a month with him) and it’s nice to share this phase of being a “kid” with you.
Hi Karen, best wishes to you and your dad. If you ever need someone to chat about all of this, feel free to get in touch with me. xoxox
Rachel, I totally agree. My mom has alzheimers Disease and caring for her at home would be ugly. It’s not just the memory loss. it’s her complete focus on her bowels, her aggressive outbursts, her moments of clarity in which she does weird things from the past (like make a doctor’s appointment or order meds she doesn’t need) and the fact that none of this her fault – it’s part of the illness.
Memory units are the only way to go. Mom is still at home, but she will be moving soon. God bless – this is a tough road for her and her children.
Darling Louise, I send you all my best wishes and support. I’m so glad to hear that you will be able to move your mom knowing you still love her, she is still your love and your source, but you will now have some much needed breathing room as she progresses. Thank so much for your kind words and do keep in touch.
My grandmother had Alzheimer’s and dementia and (being in the Philippines, and poor) we couldn’t afford to have professional care for her. It was rough and she got bounced around the relatives until she finally passed, having stayed with my eldest uncle and his wife.
She was very tiny too – and strong like an ox! (farmer all her life and that’s where her mind would return on “bad” days) I may not have had much time with her, but I’m glad I got to meet her. XXX
So beautiful Rachel. My thoughts are with you and her 🙂
I was happy to read that you had your mother’s wake right away when she asked for it instead of not taking her seriously. But, now, I am saddened to hear that her life is ebbing away as if she knew it was her time even in her state of dementia. You’ll always have that “wake” and pictures to remember her by and that is the gift she gave you. I’m sorry, I didn’t realize how hard it was for both of you at home. Your nostalgia especially touched me and reminded me that time is passing very fast.
Rachel, I’m so glad your mom has loving, quality care. One hears so many nightmare stories in that regard. I’m sorry to hear that there have been some sad changes in her condition, but I’m sure that she knows you’re there, and it must mean the world to her that you are.
Hugs,
Kathy
Hi Kathy, we were really lucky to find this place, the director traveled to Scandinavia to search out their best practices when it comes to memory care. They have really done a fantastic job and I can’t say enough good things about them. I saw her yesterday and she was up and had a little more energy, we had some ice cream together. Today we’ll be bringing her Lasagna!
Dearest Rachel, thank you so much for this update on your Mom. I was wondering how she was doing. I am happy to hear that she is in good hands. Being the caregiver is such a stressful job. Been there, done that. We took care of and lost three parents in a span of three and a half years. It took some time to recover. You have a wonderful attitude and it no doubt is what is helping you to get through this, though it is heart-breaking. You will continue to be in my thoughts girl. {{Hugs!}} 🙂
Hi Karen, thanks for your kind words and encouragement — <3
This was beautiful, Rachel. I’m sad for what you’re having to go through. But your spirit is so hopeful, and it seems that you’re savoring what you have.
Hi Julie, so nice to see you here. I’m a very lucky girl considering the circumstances, that mom invested her money well and we can afford to pay for the care she needs. I know others who are not so fortunate.
Your mother is lucky to have a daughter like you who recognizes her limits and loves both her and herself so much that she doesn’t try to risk the healthy and safety of either one. And yet, you made sure she had a chance to live and say “Good Bye” on her own terms, Rachel (that living wake is an inspired idea!).
Much love to you in these times.
Hi Eden, thanks so much for stopping by and for your encouragement.