Lindylou, you are doing such an amazing job. Your partner is extremely fortunate to be surrounded with such love and care. This is hardest for you. Peace.
LindyLou, you have walked this horrible journey with fierce determination, deep compassion, and an openness to all the challenges a caregiver will face...Your love and comittment to your partner will help you in the days ahead...I admire the strength, love and determination you've shown as you've shared your story with all of us...much love and my hat's off to you
Lindylou, it won't be easy but just look back briefly and see what has been. You will know then that your love and courage will see you through these dark days. I am with you in spirit and send you many blessings.
Lindylou, I admire you for caring for her to the end. I wish I had been able to do that for my husband. He had to spend 2-1/2 years in a nursing home. I was not able physically to care for him. May God give you the strength to carry this out to the end. Most of us would want that for ourselves, wouldn't we?
Well, we have no legs left to speak of. But, since my partner is now half my weight, transferring her from chair to commode to bed is not terribly difficult.
We had her 'six month care plan' at PACE today. Hard to believe that a year and a half ago she was able to articulate her willingness to join the program to help me help her. And also she was able to choose palliative care in advance. Both of those decisions have made possible what we are doing now. Thankfully I have never had to be conflicted about whether the choices I was making for her were what she would choose if she could. I knew.
At the meeting they gave me the word I needed. She is now eating for "pleasure". She is not, even with supplements, eating enough to sustain herself. The goal (attainable or not) is a comfortable dying process and death. She still is attending the day program five days a week until I determine she can no longer tolerate it. I have recently shortened the length of time she is there. She comes home early afternoon and we spend a couple of hours sitting in each other's arms until the aide comes and it is time to start the evening routine of supper and bathing and bed.
I know I am blessed by having such an easy going partner. She, a nurse, did know early on what was happening to her, even though she does not now. Two years ago, when we were shopping, I would linger off to the side while she would make her purchase. She would start by smiling at the cashier and explain that this transaction might take a little longer than usual because she had short term memory loss.
Now she does not know me. Does not know that home is home. But I know she senses the love I try to surround her with. I want her to feel loved.
Recently I have felt I am not posting so much for advice. What advice can you give me now? But rather because I count all of you as my friends. And friends that understand. Your support means more to me than you may ever know.
Bless you lindylou as you mentioned once we kind of started this at the same time but now you have progressed much further than we have. However I can relate or at least I think I can. Watching this slow decline I have a hard time controlling my emotions. I also look at where we were at just a short time ago and where we are at now. Yesterday was hard she kept looking at me and asking where her husband was, being anxious and afraid. You are a tower of strength I have a hard time with Lisa in a facility while you are doing it at home I know I could not do that. Hang in there I admire you.
I have read all your posts and feel you have done everything in your power to give your partner the best quality of living each and every day. She is very fortunate to have you in her corner. I am sure she knows you in her own way, and is comforted being with you.
Lindylou, your posts are such a testament to the love that you and your partner share. May that deep and true love see you through these next sad days.
Was thinking about you and your loved one all last evening and night, and sending moral support by ESP. Lindylou, the love you two have for each other will get you through this. Hugs.
There's a boat sailing out there To an island no one's aware of We can go together and take to the sea Sail with me Sail with me
Every road leads us to somewhere And every turn brings us closer to home Being alone doesn't mean that you’re free So come with me Come with me Come with me Come with me
Every face is there to be looked at Every word is there to be heard Don't believe in all that you see Just believe, believe in me Believe in me Sing with me Sing with me
(Sing with me...)
There's a note waiting out there For a song no one's aware of No one's aware of No one's aware
So, today, Elizabeth and others who love me, you would rightly have been concerned for me had you seen the maneuver my partner and I performed this morning getting her back into bed when she became exhausted after being up for only half an hour. All is well that ends well, and I did get her back into bed with no damage to the either of us. But never again will we take today's kind of risk.
As a consequence, though, she did not go the PACE program today, instead she has remained in bed the entire day. And PACE program rehab came here.
Tomorrow my dining room is becoming our bedroom. They are having the hospital bed disassembled and moved tomorrow. A hoyer lift and a tilt in space wheelchair will be delivered as well. And I will receive the needed training. Actually a wheel chair did arrive today, but would not fit through the doorways of this 100+ year old house. Smaller version arriving tomorrow.
Thinking of you and sending hugs and support through ESP. It sounds as if things are really getting rough. Your partner is so lucky to have you. I sooooooo remember those days. I know I'm not supposed to say that I understand how you feel, Lindylou, but I do feel like I understand pretty well...having been there myself. Just hang on and hold on. We are here for you.
Sending good thoughts your way through this tough time. Great you are getting the needed resources in place hang in there and take care of yourself. We are with you.
I haven't been on the site for a long time. Lindylou you are an amazing resourceful and inspiring caregiver. The PACE program sounds like a wonderful support.
Last week I phoned my partner’s family. I wish they’d call me, but they don’t. Anyway, I said that we’d had some changes here they needed to know about. And I told them.
So, Saturday her son , wife and children came for the afternoon - I did Boston Market for lunch, my new “go to” for when there is no way I’m going to cook. They immediately asked, both of them being nurses, how much is she eating and drinking. Not enough to sustain, I replied, but you can watch how we do things at lunch time. The good thing, the wonderful thing, the marvelous thing, is that my partner smiled the entire time they were here, never fell asleep once, and only cried as they were leaving. When its her happiness that I want more than anything else, I have to say this Saturday was the grandest Mother’s Day I could have wished for her.
Sunday the rest of the clan descended, mother, sister and her husband, brother and his wife and his mother=in-law. This time we ate cookies and iced tea. It was all a bit confusing for my partner. Her mother came up to me and said she does not know me. I told her to look at the number of people in the room. This I did not say to her, but if she had come up to my partner, kissed her and said, this is Mum, and had let her look at her, then there would have been real recognition. Instead she came up to her and asked do you know who I am. Well no. There was so much going on she could not process it.
But the absolutely most wonderful, the most marvelous, the very best thing ever was that they began to sing, and my darling wife began to sing with them, really singing. And I can tell you this, she knew she was with family.
So there is no real reason for me to be nit picking. We had a superlative mother’s day weekend.
What a wonderful kind heart you have, to have them all visit while you are going through so much. And what a wonderful mother's day gift for your partner.
It sounds as if the weekend worked out well. I especially loved the "singing" part of the story. If she could, I'm sure your partner would give you a big thanks for making it all happen.
Lindylou, I am glad that her family came to see her, but perhaps tired out by so many visitors. My wife's father, his gf, her aunt and a sister visited her on Saturday. She enjoyed it, but when our son and I visited on Sunday she seemed worse. I think she was tired from the previous days excitement.
This Hoyer Lift thing is like using a front end loader to pick up a tooth pick. I am not impressed at all. Its much more dangerous and anxiety producing (for the both of us), especially since the intent of the thing is for me to use it when I am alone. Way too many things can go wrong. I won’t do it. My plan is to revert to Plan C which is to “gently lower to the floor when needed”.
The transfer that almost got us in trouble last week was due to the fact that when my partner is exhausted her body becomes rigid as a board. I do not understand the physiology of that and I guess I don’t need to. Anyway, there is no way for this old lady to safely lift her when she gets like this which we proved to ourselves Thursday morning when she became tired, without warning, after being up less than an hour.
Her neck was resting on the back to the wheel chair, her butt was resting on the very edge of the seat. The situation was too immediately dangerous to even to call and wait for the fire department. I’d have had to leave her to unlock the door anyway. Since I could not lift her from the font because her body was too far from me, I placed myself beside her with my back to the bed, released the seatbelt and lifted her while getting her body onto my lap as I sat down. Then I leveraged her onto the bed by swinging her and my legs up. Once I got my breath back I laughed at the absolute absurdity of the situation. It was either laugh or cry, and iff you view this event as a movie picture show about two wild haired old ladies it really is funny. (Lucille Ball maybe?) At the same time I do take the risk seriously and do not plan on repeating it.
Anyway, Plan C is now easily possible because we have moved my partner’s bed into the living room and wedged it right next the sofa where I now sleep. We have a lot more room now, and thus more options. Just not the Hoyer Lift one. There is a Sara Lift also I heard, but that does require some cooperation from the person being transferred and my partner can’t follow any instructions at all.
Lindylou, my husband did that stiff as a board thing so I understand your challenges. He was in an ALF, and sometimes even two or three of us had trouble transferring him when he was rigid and he weighed less than 120 lb at that point.
You are very inventive and smart in the way you approach the problems at hand. Thank you for keeping us updated. We are all with you in spirit.
Lindylou, I am familiar with the Sarita lift, and I agree with you that she is probably past the point where it would work for you. With the Hoyer, practice makes perfect...it can be a useful tool, once you and your partner get used to it and establish a routine...but my other thought about that is that with her mental status, she just may not understand or be cooperative enough for a Hoyer transfer. It may just be too frightening for her. If you do use it, make sure you are transferring her the shortest distance you can make it between the bed and the chair--you don't want the person swinging up there in the air any further than is absolutely necessary.
I'm thinking again about the Sarita. (Also called Invacare lift. These are trade names of the companies that make them, I think.) You would put the sling under her buttocks and bring her to a sitting position on the side of the bed--bring the lift in front of her and attach the loops from the sling to the lift...then the lift brings her up to a standing position and supports her while you wheel it around and sit the person down into the chair. It is easier and much less scary than the Hoyer, but I think the patient has to have at least some notion of cooperation. (OK, we're going to sit up now...hold on here...OK, we're pivoting now...sit down in the chair, etc.etc.) I don't know whether your partner could still do that or not. And of course if her body goes rigid it is not going to work.
Lindylou, so many times, with Dan, I would have to figure out another method of doing something (although we never got to the lifting point, he still hasn't reached that stage). I don't know who said it, but the quote "necessity is the mother of invention" came to my mind so many times. How true that is....you are living proof! Good job, girl, just be careful (I know, I sound like a mother).
Well, I'm going to get the hoyer lift out of my house this week. It is huge, useless to us, and in the way.
The tilt in space chair, though, is nothing but spectacular. It is formed so it supports her trunk on the sides. It is high enough that with the power hospital bed I do not have to lift my partner. I just make the bed higher than the chair, pivot her, and lower her into the chair. Then I reverse thing putting her to bed, making the bed lower than the seat of the chair and pivot and lower her into the bed.
And when I put her into the chair, I then tilt it and her back side slides right into place. The footrests hold her there. The roho cushion is comfortable for her and I reposition her by changing the tilt from time to time until it is time for personal care and a nap. Also she is no longer slumped over and can more easily establish eye contact.
I thought the new positioning might help her eat more, but it did not happen. In all other respects it has been a win win for the both of us. There is a half inch clearance to get the chair from room to room in the house, but I truly am not one to worry about the woodwork.
We also now have one of those pressure mattresses. I was worrying that soon I might have to reposition her at night. Now I do not need to worry.
Weekends remain long for us. Thank goodness for the internet and books. I went browsing on some of the sites Wolf listed, and among other things watched the bear rescue the crow. My perverse perspective made me wonder what he would have done if it had been a fish. But I shouldn't be that way, should I? I am truly grateful for all the help I get, no matter where it comes from. And if a bear wants to assist, I'll be amazed, accept it, and not worry about motivations.
Interesting, Lindylou. I looked up tilt in space chair. I've noticed them being used but never knew what they were or how they could be used. Kudos to you for figuring this all out. I am glad to have learned this.
Had to go hunting around the chair for the brand, Myrtle. Its a PDG Mobility Fuze T50. If you google it you can find a picture. It looks like a wheelchair, but it is higher. The back cushion curves around the sides and support her trunk, the head rest supports the head. The foot rests do not adjust separately, but maintain the same angle with the seat when the chair tilts. For us it works wonders. It fits well in the van that takes my partner to and from the day program. Where we are now in the course of this disease I do not know how we would survive without it.
Thanks for the info. It is not the same chair. The Broda chair is not a traditional wheelchair. I has 4 small wheels, not2 big wheels, and does not have a small footprint. So it's not designed to go outside and would not fit inside the narrow doorframes in your house. In other respects, though, it is similar, with upholstery that supports the body and ways to change the height of the seat and to tilt the back and leg rests.
Six weeks ago I counted blessings - my partner could laugh then. She can't anymore. She could walk with assistance. She can't anymore. I could get her into and out of the car. I can't anymore.
The one blessing I know I have is that when she sees me first thing in the morning she gives me the biggest smile. It is bitter sweet when I say this, because when she can't smile anymore I will have to make due with the memory of the smile each time I will see her first thing in the morning.
We have a different kind of blessing, my partner and I, that I have never mentioned before on this site. It seems that the entire world has become involved with helping my partner. We have had aides from Ghana, from Puerto Rico, from Haiti, from Dominican Republic, from Libya, from Ecuador as well as the USA. I'm sure I may be forgetting a few other nationalities that will come to me after I post this message. All of them are so loving, caring, and gentle. Some see what needs to be done easily. Some need to be talked through the tasks step by step each time as we provide the care together. One is in nursing school, one is going for her GED, one is a grandmother, educated in her country but not literate in English. Some have been doing home health aide work for years. For others it is a job to help them get established. For another it is a way to be able to have a say in her hours while being a new mother. One is Muslim, keeping her hair and arms covered while providing tender care. We couldn't manage here together without them, my partner and I. I feel like the United Nations is visiting our house.
So Wolf, and anyone else interested. Here is a song I looked up and played for my myself and my partner this morning. Don't know if I ever told you she is a singer, guitar player, and occasional composer (although not this song). We continue to enjoy music together daily.
https://www.youtube.com/watch?v=wCcQPDQfOL8
Pat Humphries - Swimming to the Other Side
And yes, it is a beautiful planet. One of my mind escapes is planning a trip in my itty bitty Aliner trailer across our beautiful nation. After we lose/win this battle with dementia.
I am now “Mummy” all the time. I understand. “Mummy” is my role now. I wash her, clean her, feed her, encourage her to take her meds, sit beside her, read to her, take her out to the front yard, where I can weed and she can watch the cars and neighbors go by. I give her hugs and tell her I love her.
I have to go out today to the pharmacy when the aide is here because she started choking on thin liquids this weekend and that is how she is taking her meds and remains hydrated.
She continues to go to daycare five days a week for half days. She comes home completely exhausted and I sometimes feel guilty about that, but not too much. I need those twenty hours a week of not being “on duty”. Even just to get groceries, meds, and have an occasional lunch with friends.
Haven’t posted too much for a couple of weeks, because I really don’t know what to say.
Your other half must have really been something. I'm very sorry she has this.
Somehow I have found a path to feeling mostly love and acceptance that these were how the events of us unfolded. I know it's good that she had me including after when she didn't know that. It's all mixed in with a gnawing and profound sadness, but these are the attributes of truth and I accept that.
If I ever meet her in an afterlife, I'm going to let her know it was no trouble at all; but, but, her poop really did stink around the bend and over into the next valley. I can see her now shrugging and smiling because what are you supposed to say to that?
She's been gone for over two years now and even though she's here in and amongst me, I don't think about her that much now. I accept that too, as a healthy attribute of the truth. I also accept that I still love her. I know she can't love me because she's long passed, and I don't mean any kind of fixation or transference. I would still feel the same affection for her and her death doesn't change that. I feel more affection for both of my parents since they passed and I don't think that's strange either. It's the outcome of having thought through different things and appreciating more what I had. In my memories of Dianne, there isn't much not already learned and some of the thoughts there are more about offering the respect for what she really was. Not what the disease did to her. That was part of our story but not what she was or what we were.
I think we have all fallen a bit in love with Lindylou. I'd like to stop by and give you both a hug.while you are outside weeding. I also just don't know what to say most days. But I like to stop by here and feel the love of this virtual community. Oops, tears just filled my eyes again.