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    • CommentAuthorLindylou
    • CommentTimeFeb 21st 2017
     
    So I was explaining our weekend (three days due to the holiday) to the nurse at the PACE program. My partner cannot remember she needs assist walking and transferring. Ah this point she needs support as well as help with balance. Now that means when I am home with her, I am always in the same room as she is. Except when I need to use the facilities. Except when I need to shut the oven off and take the food out. Except when I need to answer the doorbell. Of course, she fell this weekend. Once when I was using the facilities, once when I was only four feet from her.

    I explained also there are times when she completely forgets how to walk. Which makes for an interesting dilemma when there is no chair nearby. We are using the wheel chair in the house more often when she can’t figure out how to make her legs work. Usually in the evening when she is tired, but today we had to use it in the morning.

    The nurse told me she is in the in-between stage - in-between being able to walk and not walk. The hardest stage to be in I think. Although, I haven’t been in the not walking stage yet, so how do I know. If she can’t walk or balance there will have to be a whole new routine for incontinence care.

    I’ve signed up for a personal trainer at the YMCA for five hours for strength training education. I have to be able to continue picking her up off the floor at times. Although I certainly hope I don’t have to do that very often. I have to be able to get the wheel chair in and out of the car.

    Somehow I am telling myself that this is just what it is. Nothing I can do about it. Don’t get alarmed. Don’t panic. At least she knows you love her and are doing the best you can. Would she or I be better off is she was in a nursing home? I really don’t think so. As long as I keep my promise to my son that I don’t get hurt. As long as I remain emotionally stable and don't yell or mirror my fears to her.
  1.  
    Lindylou

    Have you tried using one of those little walking carts for your partner?
    We all use them in this elderly home where I am now. We just use
    them for keeping our balance by walking behind them with our hands
    on the handles of the cart. At least our legs can get a little exercise.
  2.  
    Lindylou, I think that if she goes down to the floor, it would be better to just call the EMTs to pick her up. You must protect your back at all costs.
    • CommentAuthorRSA
    • CommentTimeFeb 21st 2017
     
    Lindylou, my wife was in the same situation as your partner about three years ago. It started with not wanting to go down stairs, even with my being there; there were balance issues as well. (She had the symptoms of normal pressure hydrocephalus, but that turned out not to be the cause.) Just a few things I learned at that time:

    Strength training is good. It's what I needed to be able to help my wife get up and move around while she was in this intermediate stage, and afterwards. But there were still occasional days when I'd pull a muscle, which was a little scary, with neither of us being mobile. Having a professional visit helped.

    My wife's mental capacity was such that she couldn't figure out how to use a walker, either the lightweight ones or those with brakes and a seat. They require learning and practice; it might be worthwhile to see if your partner can learn how sooner rather than later.

    Our tiny master bath at home was problematic, but it was possible to put a hand railing around the toilet (just bolted in) and that helped. My wife has never lost the ability to walk a few steps, so even though her wheelchair didn't fit through the door it was okay.

    Best of luck!
    • CommentAuthorSass
    • CommentTimeFeb 21st 2017
     
    Lindylou,
    I applaud your efforts to build your strength but I worry about what RSA mentioned that happened to him a couple of times with still getting hurt and becoming immobile himself. Maybe you can get someone to assist you in your home. I don't know whether this is an option for you or not, financially or otherwise. From what I have read I know that you want to take care of her yourself in your home. For all of us, it is critical that we stay healthy so we can care for our spouses/partners. I know this isn't very helpful but I hope things work out.
    • CommentAuthorcassie*
    • CommentTimeFeb 21st 2017
     
    Yes, do take care Lindylou. But as many here can testify we seem to have superhuman strengths when it comes to caring for our loved ones!
    The walkers here also have seats so if you could get her to use one, perhaps if you thought that she was about to go down you could swing her onto it?
    That is if you can even get her to walk! I am sorry that things are so difficult for you at the moment.
  3.  
    Thinking on the fly here: what if you got a walker too and she imitated what you did? Obviously you couldn't be tied down to it, but perhaps if she saw you using it enough, she would get the idea.
    • CommentAuthormyrtle*
    • CommentTimeFeb 22nd 2017
     
    lindylou,
    I just saw something posted on Facebook that made me think of your predicament. It's from youtube and is called, "New Techniques to Move Patients Safely." Here is a link:

    https://www.youtube.com/watch?v=C1jy5W3xMTY
    • CommentAuthorLindylou
    • CommentTimeFeb 23rd 2017
     
    Thanks, Myrtle. I've gone to the website you recommended and it is just what I needed. There is advice on how to use my body. There is equipment that looks to be not too expensive. Positioning in her bed has been really difficult, but there are things to help. Also things to help pivot. And to help to standing position. Appreciate more than you know.

    Do want others to know that in spite of extensive rehab my partner never could figure out how to use a walker. It was either an impediment to walk around or else to drag behind her. She did continue to walk well with her cane and an arm for support when out of the house. She used furniture to balance on in the house. Did both these things until November when the big decline began.
    • CommentAuthormyrtle*
    • CommentTimeFeb 23rd 2017
     
    I'm so glad that information might prove to be helpful. I knew someone who had one of those pivot things and it worked well.if you try any of this stuff, let us know how it works out.
    • CommentAuthorWolf
    • CommentTimeFeb 27th 2017 edited
     
    My mistake.
    • CommentAuthorLindylou
    • CommentTimeMar 3rd 2017
     
    This is our life:

    My partner sleeps 12 hours a night. She nods off at various times during the day.

    She can eat cookies and toast if it is put in her hand, otherwise I feed her the soft food that she likes from the 50s. So much for that freaking me out. Now it is just something we do together. She can hold and drink from a glass, but I have to make sure it is put down properly.

    Sometimes she can walk with my assist and the help of furniture, sometimes we need to use the wheelchair. She always needs help with transfers from sitting to standing and vice versa, but does not know she does. Whatever room she is in there I am - with a few mad dashes to bathroom, doorbell, or microwave.

    Her grasp reflex could drive me to drink if I let it. I have to pry her hands off rails that she really needs sometimes and I wish didn’t exist at other times.

    Incontinence? We won’t even go there. One of life’s unpleasant realities.

    Sometimes she knows me - sometimes I am her mother or her aunt, or that woman named Lindylou. When she knows me she tells me my smile is beautiful and she loves me. And I tell her the same. We both tell the other we are doing the best we can.

    She cannot comprehend what is said to her, except for feelings and emotions. Thankfully we still communicate on that level. She will smile at me. Our laughter together disappeared. It was always my job to make her laugh from as long as I've known her. It gave me great joy. I miss being able to do that

    She never asks for help. She never initiates speech. I call her my silent mouse.

    She sleeps in a hospital bed right next to mine and at the same level. We both find this comforting. I asked her son to help me rearrange the bedroom so we could do this and he came over last week.

    I can at present transfer her into and out of the car. Not easily, but she is smaller than me by a third and we manage. We made it to church last week. So many came and gave us hugs.

    I can get the wheelchair in and out the back of the car, but I may look for a car rack for the back that may make it easier.

    At present we have home health aides who come in for an hour twice a day. The early one helps me get her ready for the day, the second stays with her so I can make supper, fold the laundry, clean the kitchen, or do anything I want. I call it my hour.

    She goes to daycare without complaint five days a week. A van picks her up in the morning. I generally bring her home.

    The tiniest bit of Ativan keeps her on an even keel. No need for those other meds that were thrust upon us.

    I do have to say that without the PACE program, I would not be able to do this physically, emotionally, or financially. Without this website I would have lost my sanity. Our church friends are actively loving us through this time without knowing the painful details. My son calls daily to jibber jabber because he worries.

    I will one day lose my dear partner and friend. I've lost so much of her now. But I am determined that I will survive. It would be too cruel if I didn't.
    • CommentAuthorWolf
    • CommentTimeMar 3rd 2017
     
    I'm so sorry Lindylou.

    "But I am determined that I will survive. It would be cruel if I didn't"

    I agree with that first part completely. It was that determination that I woke up with every morning. It would also be a cruel waste of life if I didn't, I agree. But I have a different second part. While I am here, OUR story continues. It is only my half that has input, but I AM our story still and what that story is will be constructed in the workshop of our mind whatever we say here.

    It isn't a shrine and I don't dwell in the past - I live my living and real memory of all things and in that memory are a hundred thousand moments of her. My memory this instant of her isn't in the past nor is the narrative and story line I bring to it. They are now. In ways no one else ever has a chance of knowing her, in intimacies no one else shared with her because she was with me, in personal things said, in how far her hair was let down, in her fears and in her joys - no one else knew her. Only I know these things because only I shared in them as her partner.

    It was a privilege. I loved her. The twists of fate mean I continue alone. I don't accept continuing. I mean to write these chapters well.

    The fact that I don't talk about how sorry I am or how much it hurts me or how sorry I feel for myself are because I've chosen my path in exactly and precisely the way I did when I stood by her however hard it got. All the other things were there in spades. I ignored them. Dementia taught me how to ignore horribly serious things in life in order to keep helping. That's exactly the skill needed both during and 'afterwards'.
    • CommentAuthorcassie*
    • CommentTimeMar 3rd 2017
     
    Yes, you will survive, Lindylou. Look at what you are coping with now, all that was impossible to you not very long ago.
    The strength to keep caring for her will come from your great love and I believe that is how we do it, day after day. Take care.
    Wise words as always, Wolf.
    • CommentAuthorRona
    • CommentTimeMar 3rd 2017
     
    Lindylou I know in one of your posts quit a while ago you said you followed our journey and felt that we were very close, going through the same things around the same time. You have chosen to keep your partner with you Which is very admirable. I knew when I had reached the end and Lisa has been placed for just about 8 months now. hard but I know that was the right decision for me and for Lisa. It seems your partner has moved quicker in some areas but we are still close in others. Hang in there you are doing a fabulous job and as many have said be sure to care for yourself. And yes we will survive I know from your posts that you will survive and I am determined to not only survive but to have the sun shine in my life again.

    I know That is what our partners would want for us it is what I would want for her if the situation were reversed.

    I admire you.
    • CommentAuthorMim
    • CommentTimeMar 3rd 2017
     
    I'm feeling especially emotional tonight....first, I read of the passing of Myrtle's husband, & reading of Lindylou's struggles & devotion has just touched my heart. These are the things that nobody knows unless they've been there...how awful & gut wrenching it can be, how there are moments of lightness & closeness (though they may be few & far between), how oppressive it can be for the caregiver. The sadness, the sometimes guilty feelings, the fear of things to come...it's a wonder any of us survive this.
    I don't come here as often as others, I guess because I still want to hide from it at times. But the advice & support here is indispensable. It's honest & open. I think many times that I've gotten an easier deal than so many others (does that sound strange? It does to me). Deciding to place Dan was taken out of my hands because of my own illness, there was no other choice. He has been able to "adjust" to his new environment, as much as he is able. He's had a real down slide, but seems to have bounced back a little. Sometimes I can't relate to some because they have been through so much more than I have with this disease...doesn't seem right. Dan now has some real physical/medical issues, so we're not done yet...don't know what will happen after his cancer surgery. I must keep going, I must survive.
    I know I'm rambling....please forgive. Sometimes I don't even make sense to myself.
    • CommentAuthorcassie*
    • CommentTimeMar 3rd 2017
     
    You make perfect sense, Mim.You have been through so much with your own health and now it is another dreadful ride for you, with Dans' health issues. Be gentle with yourself and always feel free to say whatever you like here, we all understand.
  4.  
    Thinking of you this morning, Lindylou, and all you are coping with. Your partner is very lucky to have you...you are one strong lady. Just try to keep on taking care of yourself, too, while you are taking care of her. Easy to say and hard to do, as we all know. But whatever little things you can do to sustain yourself are so necessary...whatever it may be for you.

    Mim, you make perfect sense. I honestly don't know how you do it. Hugs. (Maybe we can touch base in April, when I'm coming back down.)
    • CommentAuthorMim
    • CommentTimeMar 4th 2017
     
    Yes Elizabeth, let's do.
    • CommentAuthorLindylou
    • CommentTimeMar 5th 2017
     
    Sometime, in January perhaps. I grinned at at my partner. She grinned back. One or the other of us started laughing, and then both of us were laughing and laughing and laughing. I finally asked her, “Do you know why we are laughing?” She looked at me and said, “Yes. Because it all just sucks.” I’ve said over and over again, she can’t talk or understand anything, with the exception of feelings. She can and does communicate these well. Then we continued laughing together until we couldn’t laugh anymore. I can’t remember her laughing since. But she was right. It all just sucks.

    I told this story in church not long ago. I was asked to speak for five minutes on the theme of “Flashes of insight in the midst of the storm.” My partner and I have had several flashes of insight over the course of these last few years and I used this story to illustrate one of them. When I got up with my partner and went to the front of the church I discovered it was the Sunday of the month that the children come to service. I thought, “I can’t change that word. There is no other word in the English language which fits.” So I gave a brief warning to the kids and adults that I would use two words generally not spoken in church, and about how we have to choose our words, needing to do it carefully so as not to hurt, distress, or offend people. And then I went ahead with my talk as originally planned.

    I’m using this story now to illustrate that I am not regretting the time, the tedium, the sadness, the hard work and the frustration that I am living through with my partner because we have no choice but to live through it. I’m smiling now when I remember that moment of laughter that we shared. And I have felt loved, and not just by my partner, throughout the ordeal. I know I will be a somewhat different person at the end of all this. I know that the stories we have created together, my partner and I, will change over time, And with added insight and age, our shared story will change in my mind after she is gone. But will be nevertheless as real.

    Your post really got me thinking, Wolf.
    • CommentAuthorSass
    • CommentTimeMar 5th 2017
     
    Lindylou, I love your story! And I love that your partner said "Because it all just sucks". That's just priceless. You will probably remember that as one of your favorite memories throughout this difficult journey. We take the moments we can and we cherish them.

    I re-read Wolf's post and it made me think too. No one will ever know Doug the way I know him, because he is/was with me. We spoke of being eachother's soul mates all the time. He was different than me yet we seemed to complement each other. But I am struggling with being able to not think about how hurt I am and how much this all just sucks sometimes. I was better in the beginning but time has worn me down. I'm trying to get myself shored up for what's ahead. I will pray for strength and courage and I will come here for encouragement and examples of how it can be done. Because I am determined that I will survive too.
    •  
      CommentAuthormary75*
    • CommentTimeMar 5th 2017
     
    Sass, I found myself being worn down and then trying to "shore up" for what was ahead, but found that wasn't working either. So then, instead of trying so hard, I paced myself and accepted what was happening. This was a battle that I wasn't going to win.
    • CommentAuthorLindylou
    • CommentTimeMar 17th 2017
     
    When my younger sister was dying from cancer six or seven years ago, after work I used to stop by the cemetery where our folks were buried and just wail until I was exhausted and then continue on to the nursing home where she was receiving hospice care.

    Well yesterday while my partner was at daycare I just wailed. For the first time. Loudly. And I couldn’t stop. Until I was was finally just whispering the words I had been screaming before. It is just not fair. Its not fair for her. Its not fair for me. Its just not fair. Its just not fair.

    And of course I know that life is not fair. Its just that its unfair that its unfair.

    She’s been crashing earlier and earlier in the evening recently, and yesterday I just watched how at 6 PM she suddenly went from someone who was eating and smiling to someone who was so exhausted that her goal it was was to just curl up in a fetal position and sleep. It happens in the course of five minutes. I just pulled her chair across the floor, over the sill and lifted her practically dead weight onto the bed and attempted to position her on the bed so she had all body parts on and I could pull up the railing.

    On Tuesday, the night of the blizzard we were sitting on the couch in the living room watching TV around 7 PM. I saw how tired she was and said, ‘stay seated, I’ll get the wheelchair”. I was coming back with it and watched her curl forward and then roll off the couch onto the floor. I could not get there in time to stop it from happening.

    Monday night as I half carried her into the bedroom, I looked in the mirror and I saw two shell- shocked old ladies who looked as if they were stumbling out of a bombed out building.

    The PACE program is providing me an additional hour a day so I can help my partner to bed without getting hurt. I know it is only going to get harder, and I guess they realize it too. And thank goodness for the strength building coaching I am getting at the YMCA. It is making a difference.

    But you know, its just not fair.
    • CommentAuthorCO2*
    • CommentTimeMar 17th 2017
     
    Do not post too much anymore. But sometimes as I read what some of you are going through I am reminded of my hell and I know now soon to be 2 years later that one of the main things that got me through was the deep desire within myself to live. This desire came from somewhere I never knew was there. It was from a very very deep place in the depths of my being and it was this desire that kept me going. Yes there were other things- my support group and this online website as well as hospice and prayer but it was the desire to live that was the main thing that gave me courage and strength. As I reflect back especially since the loss of my dear mother a few weeks ago, I know that to live we must come to,acceptance of our losses in life and as we age there will undoubtedly be more and to remember that we are never alone even tho oftentimes it feels that way. There is life beyond this horrible situation. So just keep taking one step at a time and take deep breaths knowing you are not alone and it will soon be over for you. Yes you will miss them but you will have the consolation knowing you did the best you could and that God has a new plan for your life now. You will also know that you have grown a lot,stronger as a person having gone through this fire.
    • CommentAuthormyrtle*
    • CommentTimeMar 17th 2017
     
    Lindylou, I am worried about you. The situation in which you find yourself is way beyond your physical capacity. I would amend your statement that, "It's just not fair," to say, "It's just not right." the fact is that taking care of your partner is a two-person job.
  5.  
    Yes, Lindylou, I have to agree with Myrtle. I'm afraid you are going to get hurt. The transfers you are describing are not safe. Has anyone suggested a hydraulic lift--not the "Hoyer lift" where you crank her up into the air, but the other one--we used to call it the "Invacare lift"--which is a different kind of hydraulic lift that lifts her from a sitting position to standing, and then you put the wheelchair behind her. And I know I've suggested it before, but if she goes to the floor, you really need to call the EMTs to pick her up, rather than doing it yourself.

    What is going to happen to her if something happens to you? Lindylou, you need to have a reasonable expectation of a safe care plan to keep her home--and that means safe for you as well as safe for her.

    It sounds to me as if you are becoming stressed beyond stress. Somehow the care plan needs to be increased.
    • CommentAuthorSass
    • CommentTimeMar 17th 2017
     
    Lindylou, I'm with myrtle and Elizabeth. I'm worried you are trying to do too much by yourself and risking getting hurt. There comes a point that we all need help and I think you need more than you are getting at the moment. You need to make sure you take care of yourself so you can take care of her. If something happened to you, and you were laid up needing help yourself, who would step in to care for her? Who would care for you? Safe and reasonable are the key words here so you can keep doing what you've been doing. I'm thinking of you and hoping you will be able to get some relief and assistance with this.
    • CommentAuthorJazzy
    • CommentTimeMar 18th 2017
     
    You sound like an awesome care partner. She is blessed to have you but as the others have already said, you need to care for you so you can care for her.

    Bless you

    Jazzy
    • CommentAuthorLindylou
    • CommentTimeMar 19th 2017
     
    Couldn’t go back to sleep tonight, so I browsed through some of the old pages and realized that , almost a year ago to the day from my last wail, I had also wailed about the injustice of it all. I had forgotten that I had pounded my hands of the bathroom floor and cried out that it was just not fair.

    And I realized by browsing the pages how very much things have changed. Last year’s issues were hiding the knives, stove knobs, trash and laundry baskets, and anything that should not be eaten. Worrying that I would sleep through the night while my partner was “lost” trying to find her way to the bathroom or back. Worrying too about elopement.

    And I realized how a year and a half ago how she and her doctor had discussed palliative care, so possibly another disease might take her rather than end stage dementia. My partner had been a nurse all her life. I remembered how also, a year and a half she agreed to join the PACE program, doing it for my sake.

    Right now she cannot feed herself, cannot transfer or walk without assistance, is frequently incontinent. She cannot tell me what she needs or wants. She sleeps, for the most part, 12 hours a night. Her yes and no mean nothing, I have to guess. She still eats soft food, but has been losing weight since December. But you know, she still tells me she loves me, doesn’t matter who she thinks I am.

    I know a number of you are expressing concern about me. And yes, Elizabeth, I will call the fire department the next time my partner falls.

    I do feel, however, that the PACE care plan is serving us well. I have 3 hours a day of home health aides coming in. One comes for an hour in the morning and she and I bathe and dress my partner for the day. That has, over the past four months, become a two person job. Another aide comes late afternoon, allowing me time to cook supper and clean up. Her hours have been extended recently so I will have help putting my partner to bed when the great fatigue hits her. Going to bed very recently became a two person job.

    Also my partner is attending daycare five days a week. A van picks her up and brings her home. I have her hospital bed pushed right up next beside my bed, and a commode next to the hospital bed. We use a fancy gait belt which clips, not buckles and has loops all around it which helps with stability. I bought a disc for the floor to help her pivot during transfers, but not sure how to use it safely, so Ii’m not using it yet. Maybe with training?

    The goal of PACE is to keep people safely at home. That is my goal too. I worked 30 years as Activity Director in nursing homes - all very good not for profit facilities. But truthfully have no desire to be a visitor in one. Maybe I feel that my old role would suck me back into caring for many. I think that most of the time I’m glad its my partner and me being together, not separated and sleeping far away from each other. Each choice has its own challenges.

    So, I may wail again. And you’ll hear me vent again. I want you to know that journeying down this road with so many wonderful people helps a whole lot. Thanks for your interest and concern.
  6.  
    "I think that most of the time I'm glad it's my partner and me being together, not separated and sleeping far away from each other. Each choice has its own challenges." Yes, that is the way it was for me and DH, Lindylou. That is exactly how I felt. I had worked in health care since I was 19 years old, and was physically capable of caring for him myself, while also having the nursing knowledge...and having a pretty good idea of what I couldn't do myself, and how to marshal the forces around us--to make a care plan, so to speak...to get his needs met. I'm glad I did it, and in our situation could not have imagined doing it any other way. But there's no question it damaged and changed me deeply...physically, emotionally...it has taken me two and a half years to come out the other side--and I'm still learning how to survive and find happiness on my own. (And yes, I'm finding it.)

    The hospital bed pulled up next to the big bed. The commode at the foot of the bed. The oxygen in the corner. The dresser full of Depends and hospital gowns. Holy-moly...you are bringing back memories, Lindy.

    This process is definitely not for sissies.
    • CommentAuthorFiona68
    • CommentTimeMar 19th 2017
     
    Lindylou, Your comment "each choice has its own challenges" really touched me. God bless you each and every day that you lovingly care for your partner. I will keep you close in my prayers.

    PS: Hopefully, your Pace health care aide will help you learn how to effectively use the floor disc for pivoting.
    • CommentAuthorLindylou
    • CommentTimeApr 3rd 2017
     
    So, its spring, if you don't count our most recent snow storm. My partner has been laughing more, something that brings me joy. We have found our easiest way to walk is for me to hold her hands and wrists and go backwards through the house. Otherwise she is grabbing hold of things and I have to hold her up and try to release her fingers from whatever she is grasping at the same time. Today, she who does not talk and never finds words, said it is like dancing. We used to ballroom dance in our distant past. I used to go backwards then too.

    I have been hyper-vigilent about my partner's skin since breakdown can be so painful. So when I noticed a red spot on her foot I let the PACE nurses know. Rehab suggested new shoes with a wider box, and said they knew a man who specialized in shoes for the elderly. Contacted him and when we tried on the new shoes today lo and behold she can pivot ever so much better. The new shoes have a smooth sole and a skid resistant heal. Best of both worlds on one shoe. I have been petrified that if her feet were not facing in the right direction we would damage her knee when she sat down. There would be times I would be stuck with her, since she couldn't/wouldn't pivot and I refused to let her sit. Also, when I thought she was forgetting how to walk, it was probably only that she was too tired to lift her foot and couldn't slide it due to the rubber sole on her old shoes. Sometimes it takes five months of frustration to get something figured out. Ah, well.
    • CommentAuthorMim
    • CommentTimeApr 5th 2017
     
    Lindylou, you are a person of great strength of character & compassion (love). You are an inspiration, but please, please don't damage your physical self. I know we are all damaged emotionally from this "thing", not much to do about that, but the physical part is a different matter. I know for myself that I could never care for Dan's physical needs, I'm just not a strong person that way. In fact, I'm rather surprised myself how much more "soft" I have become, not much stamina, tire so easily (I suppose that has a lot to do with my own health problems & AGE!).
    Continue to be as strong as you can be, but recognize your limits. Okay, I'm done preaching to the choir now :)
    • CommentAuthorOnewife
    • CommentTimeApr 5th 2017
     
    Lindylou I agree w min yes you are one Amazing caregiver. My Dh just started falling and the Sr center has said he is a fall risk and I'm not sure how much longer he will be able to attend. The other day returning home he was walking up 5 steps to get into our home when he fell backward. I was able to break his fall but we both ended up on the cement. Luckily we both are ok, I'm sore as I'm sure he is but nothing broken. I knew from your post this was coming but until you experience it first hand, it doesn't resonate.
    • CommentAuthorLindylou
    • CommentTimeApr 8th 2017
     
    Onewife, I am so glad that you are both okay. What a scare that must have been. New Year's Eve my partner and I got stuck on the front steps of the house, couldn't go up and couldn't go down. Some neighbors rescued us. We now go up and down the back door ramp with a wheel chair to and from the car. A van picks her up and brings her home for daycare. That is new too.


    Mim, thank you for your concern. I want you to know that I am as careful as I can be. One thing that has made it easier to help my partner is that I am big and she is tiny. Nevertheless today I decided that it will take two people to help my partner walk. It has become too dangerous for us to continue alone.

    So many losses in just such a short time.
    • CommentAuthorMim
    • CommentTimeApr 12th 2017
     
    My thoughts are with you, dear {{hugs}}.
    • CommentAuthorLindylou
    • CommentTimeApr 14th 2017
     
    My partner has been eating less and less food, a gradual decline since January. I have only been making food that I know she has really loved in the past. It is the 50's food that she used to cook for her mother and siblings as a teenager: chicken ala king, tuna noodle, shepherds pie, eggs on toast. I have adapted roasts and vegetables she likes into hash that is easy to chew. But for the last two days she has only eaten a mouthful or two before closing her mouth. Now she is eating mostly liquids including milk, supplements, and juice, along with jellied toast and an occasional cookie. I found a website that is helping me deal with this, but it is hard nevertheless.

    https://www.bkbooks.com/blog/topics/eating-or-not-eating

    The second entry in particular I'm finding helpful even as my heart breaks. This blog is run by a nurse who deals with the dying.
    • CommentAuthormyrtle*
    • CommentTimeApr 15th 2017
     
    Lindylou, what about pureeing the food? It might be the texture that she objects to.
    • CommentAuthorLindylou
    • CommentTimeApr 15th 2017
     
    Myrtle, I'll try that this afternoon. I do know it is not a swallowing issue. Truly did not think about a texture preference. I do know that after eating hardly anything for two days she devoured a easy over egg on buttered toast last night.Am I coming or am I going?

    My blessings are:

    She is walking with assist of two.
    I can get her in and out of car by myself.
    I can get her to laugh sometimes.
    • CommentAuthorcassie*
    • CommentTimeApr 15th 2017
     
    It is not D.... much to be thankful for, Lindylou. But it is good that you can still make her laugh, she is probably laughing with joy to have someone like you in her corner, doing all that you do for her and keeping her safe from harm (I truly believe that she really is aware of that).
    Take care Lindylou, you are amazing and everyone here knows what strength it takes to keep going.
  7.  
    Encouraging thoughts, cassie*. You always say the kindest things. Wish you weren't half a world away. (insert smiley face).
    • CommentAuthorcassie*
    • CommentTimeApr 15th 2017
     
    Marche, it always meant so much to me during my journey, just to know someone was thinking of me.
    I too wish you were not so far away,I would love to invite you all to dinner at my place.
    We really are a wonderful mix of people, here on this board so what fun we would have!
    • CommentAuthorMim
    • CommentTimeApr 15th 2017
     
    Cassie, where are you (referring to marche's comment)?
    • CommentAuthorLindylou
    • CommentTimeApr 17th 2017
     
    Had four handsome, sweaty, smokey, dirty, smiling young men visit our bedroom Saturday night. My partner's leg got stuck in the bed railing and I was unable to be on both sides of the bed at the same time to fix the situation. Called the fire department and they were so nice. Two lifted her up and one eased the leg out. They were so nice that my partner was not even alarmed. I keep a pillow slip on the railing to prevent just such an occurrence but the safety pin pulled loose and she got stuck. Pillow slip is now anchored with 4 safety pins and hopefully we have fixed things so this won't happen again.

    Made it outside twice this weekend. Once to the nearby botanical garden and once to church. We had beautiful weather here in Massachusetts. It was wonderful to be outdoors after many long winter weekends spent indoors. We'll do this as long as it remains safe for me to put her into and out of the car. So wonderful to see spring happening.

    Myrtle, I pureed the chicken a la king, put it on top of mashed potatoes. She ate the whole supper. Thank you so much for your suggestion. We do need each other on this website.

    Cassie, three years ago we promised to look for the joy in each moment - and we did that for a long time. Two years ago we said we would laugh as much as we could and only cry when we had to. We laugh far less now, but we do on special occasions. :) A year ago we both acknowledged that both of us were doing the best we could. And while my partner can't tell me that anymore she did for a long time. And I continue to acknowledge verbally to her that I, with my whole heart, know she is doing the best she can.
    • CommentAuthormyrtle*
    • CommentTimeApr 17th 2017
     
    What great guys!

    I'm glad that worked. During my husband's pureed food stage, he would not even eat anything with a slight graininess, like pureed hamburger. On the other hand, during this period he once ate a hot dog in a bun and another time grabbed some potato chips on another man's tray.
    • CommentAuthorMim
    • CommentTimeApr 17th 2017
     
    Well, Lindylou...that was an interesting comment! :)

    I hope the problem with the "leg stuck in rail" is permanently fixed. You're doing such a marvelous job with caregiving. I admire that.
    • CommentAuthorLindylou
    • CommentTimeApr 23rd 2017
     
    Back in January my son and I swapped cars so that I could continue take my partner out. I told him last night that when he and his wife comes up in May we can swap cars back to their rightful locations. I can no longer assist my partner into a car. Didn't know that Wednesday evening would be our last ride together in the car, anymore than I realized in November that our dinner outing then would be the last time we'd eat in a restaurant.

    So last weekend was our first and last trip this season to the horticultural garden that both of us have loved for years. And Easter was the last worship service we will ever attend together.

    My partner's son came to visit with his two younglings Friday and we had a very nice time together. I explained to the older girl (4 1/2 years) that I would be helping her Nana eat because she was sick and needed my help. My partner was so happy that day, her face was one shining smile. I realized though, that day, as her son and I assisted her to walk to the bathroom, that that was her last walk, even with the assist of two.

    I am learning daily new ways of handling personal care. Soon, maybe today, it will all need to be done in bed unless I have an aide with me. She can no longer support her trunk without assistance. I move her to different seats throughout the day for the sake of her skin. And I prop her up so she can rest without being slouched over. She is light as a feather now and I feel no strain in transferring her.

    I offer her food and beverage throughout the day, letting her eat or not eat, drink or not drink as she chooses. So far, thank goodness, she has always chosen to take her liquid seizure medicine.

    I think our long goodbye may be coming to an end in the next few weeks.

    I am infinitely sad.
    • CommentAuthorWolf
    • CommentTimeApr 23rd 2017
     
    I'm so sorry Lindylou. If I could take some of that off your shoulders, I would.
    •  
      CommentAuthorCharlotte
    • CommentTimeApr 23rd 2017
     
    Sorry Lindylou. I pray the days go peacefully and no pain.
  8.  
    Wishing you peace and strength, Lindylou.