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    • CommentAuthorLindylou*
    • CommentTimeJan 18th 2016
    Slept through the motion sensor alarm, but woke up around 1 PM when my foot hit a wet spot at the bottom of the bed. Found my love wandering in the kitchen. Also found the foot of the bed and and the bedroom floor wet and sticky. It could have been worse, it was only root beer. But in the course of trying to wipe it up my pajamas got sticky too. Midnight surprises and I guess I let some impatience slip. She insisted she didn't do it. She insisted she could clean up, and (having learned a while back never ever to get in an argument with her about anything) I sent her back to the kitchen for more paper towel. I was finished when she returned with oreo cookies. I'm going to scrub the floor when its morning. Meanwhile, a result of my impatience, she thinks about running away, takes a flashlight and a picture of her son to the front door, opens it, sees that it is dark and snowing outside and changes her mind. She gets back into bed and is now sleeping soundly.

    I on the other hand, wide awake, grab for my computer and go to The Alzheimer Spouse Message Board, and by good fortune read the the discussion "where has everyone gone?" from beginning to end. Really a happy accident landing on that page. Thank you, thank you. I maybe a "newbe", a one week member, but you all have become my friends. Grateful for this site.
    • CommentAuthorCharlotte
    • CommentTimeJan 18th 2016
    What's it about 3 am for you? Midnight here. I am one that stays up late and sleeps in with my hb.

    Yes, the common claim: I didn't do it!
    My hb threatens to leave at least once a day. Says a man is picking him up. Recently I told him I would drive him if he told me where to go. After driving around for a half hour, he said he wanted to go back home.

    Yes, I also hear I didn;t do it. Of course, he may believe that since he imagines there are other people in the house.
    • CommentAuthorLindylou*
    • CommentTimeJan 18th 2016
    I agree that car trips can be a good thing. Last Thursday my partner was upset when I picked her up at day care, and I thought I cannot bring her home like this, so we drove and picked up bird seed, then to the other side of town to a fish shop (I hadn't realized that oysters are as expensive as gold). When we got home she was happy and glad to be here.

    We have a Ford Escape and I am fearful that in a short while she will not be able to climb into it. While we have been going to dealerships to try on cars for size, I hate the thought of giving up this car. It can pull our little a-liner which I still fantasize using this summer. But I think that time really is over.

    Got up this morning. All of yesterday's problems are gone. She is happy and glad to be here. And now we have a clean bedroom and the bedding will be clean too.

    It brings tears to my eyes to realize that so many people are facing the same issues, but taking the time to boost up others. Thank you.
    Try having her sit down (rear end first) into the car (facing outward, if you see what I mean.) Then you just help swing her legs into the car. If it is hard to swing her around, there are swivels you can buy in the medical supply houses, or probably order online. Or easier yet, and a lot cheaper, is to lay a plastic grocery bag on the passenger seat, have her sit on that, and swivel her around and get her legs in. The plastic grocery bag should slide easily enough on the seat to help with the "swivel."
    • CommentAuthorCharlotte
    • CommentTimeJan 18th 2016
    If it is too high, and she is able to, you might find a stool that will get her up and then swivel in. If your explorer is paid off, might think about leasing a car.
    Yeah, it will depend on how tall she is. My mother at 87 (height about 5 feet 5 inches ) could get into a Ford Escape or a Toyota Highlander that backing up to the seat, rather than trying to climb in forwards. That's why I suggested it.

    I remember seeing on TV that the Queen Mother of England, when she was still alive, would be assisted with one of those sturdy metal stools with the black, rubberized top--like they use in hospitals, MD offices, etc. I actually have one of those--got it at the medical supply store when I needed a stool so little grandchildren could reach the sink for hand washing. I just thought sturdier was better, no matter who it was for.
    • CommentAuthorLindylou*
    • CommentTimeJan 18th 2016
    You know, I have been dismissing stools because I have thought they'd be too risky. My partner had a stroke when she was in her twenties and is quite lame. But due to this conversation I am revisiting this idea. If she holds the door when she pivots, if the step is big enough she can pivot safely, if she can understand the verbal coaching. I'm going to try it.I absolutely love the idea of the plastic grocery bags to help pivot.

    If it comes to getting another car, Mass Health will not let me own two, due to my partner being in the PACE program. So the Escape would have to go. Sigh. Maybe there is a mini van out there that my partner can get into and I can maintain my fantasy of being able to take our camper out next summer. But she and I getting out of the house every day is way more important than an unlikely dream. I have to convince myself. It makes me sad that it is either/or not both/and.
    • CommentAuthormyrtle*
    • CommentTimeJan 18th 2016 edited
    As my mother got into her nineties, she started getting a lot shorter. Here is what she did to get into my Subaru Outback: Get a set of plastic steps that are used for stepping exercises and put one the ground next to the passenger door. Put a large black plastic trash bag on the seat. The exercise steps are not heavy but they are very large and solid, so you can turn around on it. The black trash bag gives more area for sliding your bottom onto the seat than a small grocery bag does. You can keep both the step and the trash bag in the car for use when needed.
    Wow, great ideas, Myrtle. Better than a physical therapy consult! (Kidding...sort of.)

    Actually, I was going to suggest just that...a physical therapy consult to get some suggestions? I would eliminate all other options before you take the drastic measure of trading in your vehicle on something else...especially if you like what you drive and it meets your needs otherwise.
    • CommentAuthorLindylou*
    • CommentTimeJan 20th 2016
    As good as a PT consult or even better, Myrtle! I agree with Elizabeth. I went searching on the web yesterday and found the biggest exercise step I could find. And it is adjustable for height. And it is light. Ordered it on e-bay this morning and can't wait to see if it works. This is certainly the least expensive option by a long shot if it works. I'll let you know.
    • CommentAuthorLFL
    • CommentTimeJan 24th 2016
    Lindylou, late to the party but I use an exercise step to get in my sister's huge SUV. I feel very stable on it and there's more than enough room to turn around on it when I have to. It is light weight too. An occupational therapist made the suggestion when I was recovering from bi-lateral knee replacement surgery this summer.

    Great recommendation Myrtle.
    • CommentAuthorLindylou*
    • CommentTimeDec 16th 2016
    Hi all. I had to go back to this entry to find out who recommended the step exerciser to me a year ago to assist getting my partner into the car. Myrtle, it was you! I bought it eleven months ago. It sat in my hall until we would need it. And now we do. Used it for the first time today. It works like a charm. I bought it large enough so should she have to pivot it would not be scary. Getting her into the car these last few days were scary, though. Till I remembered what I'd bought for just this eventuality. Thank you. Thank you.
    • CommentAuthorRSA*
    • CommentTimeDec 16th 2016
    That's great, Lindylou. I'll offer another bit of advice that you're probably already aware of: it's really easy to strain your back when helping someone in and out of a car. It happened to me a few times, and eventually I started doing lower-body exercises to try to prevent it.
    • CommentAuthorLindylou*
    • CommentTimeDec 29th 2016
    So, its two o’clock in the morning, again, but 11 months later. My partner has been on a daily decline since this Thanksgiving. (No more roaming around fetching her own Oreo cookies and root beer in the middle of the night like last year, for sure.)

    She was dead weight when I transferred her to bedside commode and back again an hour ago. Now she is asleep and I am wide awake. (Some things don’t change.)

    Physical losses in the last month include:
    inability to use stairs
    significant loss of appetite and disinterest in food
    inability to get into car without the assist of two people
    incontinence of bowel and bladder
    inability to walk independently and unable to walk and balance at all on occasion
    inability to follow any kind of directions

    Social losses:
    no more going to church
    no more going out to eat
    no more errands together
    long weekends when it is just the two of us

    one or both of us could get hurt

    Present situation is not sustainable on any kind of long pull. For short term? Not sure. I’m leaving on a one week respite in two weeks. Can I manage for two more weeks without either of us getting hurt? Not sure. But I’ve promised my son I will not get hurt.

    I’m getting more services and equipment from the PACE program. Not sure if it will be enough.

    I’m writing all this down because it is all in my head. An objective look at what is happening.

    My heart is crying out. The dying process has begun. I don’t want to have a hospital bed because then how can we cuddle? I don’t want a nursing home, visiting will not be the same. I want what we had 12 years ago and I never will.
    • CommentAuthorbhv*
    • CommentTimeDec 29th 2016
    Awww Lindylou..... my heart is crying out to you.
    Lindylou, this sounds like a crisis situation. If she is going dead weight on transfers, and you are transferring her alone, you are either going to injure your back, drop her, or both. It sounds like she is pretty close to total bed care, if not already there, and for that you really must have a hospital bed. Arrange the room so it is pulled right up next to your "regular" bed, so you can reach over and touch her, and so you can hear her breathing in the night. You need the hospital bed to be able to raise the whole bed for providing care (bed bath, turn and position, etc.) or bed making/changing. Otherwise you are going to kill your back. The head needs to be able to be raised for feeding, oral care, and so she can breathe easier if that becomes a concern. And if the head is raised and she is sliding towards the foot, you need to be able to put up the knee gatch. I'm wondering if it is time for at least an assessment visit by Hospice. You need a Hospice that will be willing to take her without a strict six-month prognosis. Different Hospice's have different criteria, so it pays to call around. I'm not sure it's realistic to promise your son you will not get hurt. The way things stand right now, you and your LO are both at risk for injury. I would not run your care plan this way for even two weeks. You need more help Now. It sounds as if PACE is increasing the care plan, but what are they actually adding? I'm sure they are mandated to provide a reasonable expectation of a safe care plan, but it sounds as if your LO is deteriorating rapidly. Is there a plan for placement, or will you keep her home?

    I'm very worried about you right now.
    • CommentAuthormyrtle*
    • CommentTimeDec 29th 2016
    Lindylou, Is there a person from PACE who is monitoring her needs and her care at home and who actually comes into the house regularly to see what exactly is going on? Or are you the only one? It sounds like you could use a care manger to help you deal with some of these medical issues. Also, is your partner still going to daycare? And do you have any other breaks from caring for her in addition to day care?

    It occurred to me that one of the hardest things about caring for a spouse in the more advanced stages might be the difficulty of separating the care issues, e.g. hospital bed, from the personal issues, e.g., hospital bed. People who have many years of education and experience in making medical judgments (like elizabeth, who is a nurse) at least have those habits of thought and problem-solving to fall back on when they are caring for their spouses at home. Speaking for myself, when my husband started his recent decline, I went into a place of both grief and fear, thinking not only about death in general but also about how I would pay the bills, pay for the funeral, declutter the house, organize and discontinue my work, etc. When someone in LTC starts to decline, their spouse (like me) does not have to focus on the details of care issues, too. But you have to do both. Please note I am not saying you should admit your spouse to LTC care. (As you know, I think that too many people assume that is the inevitable option.) I guess I'm wondering if it's possible for someone in this situation to compartmentalize.
    • CommentAuthorLindylou*
    • CommentTimeDec 29th 2016
    bhv - I saw your post just before I went to sleep last night and smile/cried. Thank you. I then had a dream that someone came to the house to see what was happening here and totally got it. I am sure your post led to the dream, and I was able to relax.

    Elizabeth, you are right about the need for hospital bed. I’ll tell them to add that to their list of things I need now. I’m sorry, I cry just every time I think about it. I spent the morning looking at the bedroom with a measuring tape. And thank you for the suggestions. And I’m crying as I write this piece of this post.

    With the help of an aide I have been able to get my partner into the car, but this, in spite of our having a ramp, is not sustainable. A van will start picking her up toward the end of next week to take her to daycare, I hope. She will not go to daycare if I do not feel I can get her into the car, safely for her and for me.

    Myrtle, while PACE does come to the home, their last visit, while recent, was in November before everything began disintegrating. They do, however, know everything that is happening here because I tell them. I currently have aides coming seven mornings a week for personal care and light housekeeping. They are going to start putting in an aide late afternoons, just to provide standby and monitoring, something that needs to be done constantly since she will try to walk until she is exhausted.

    My new plan is when she is dead weight and we are stuck, I will bend my knees and lower her to the floor. Then either one of my tenants will come down and help or I will contact the fire department.

    Also, Myrtle, I have been thinking of you and your husband a lot. What a tough row we all have.

    Also, Wolf, thank you for a wonderful Christmas at the lodge. I was a basket case before I arrived. Much more mellow and realistic since my visit. Doesn't mean I don't cry though. I know you understand.
    • CommentAuthorbhv*
    • CommentTimeDec 29th 2016
    Lindylou, I am in California and was hoping you saw my post before you went to sleep. I dreamed about you too. Gave you a hug.
    Funny, my DH did something this evening that reminded me of your root beer in the bed post. I was thinking about that all.evening. and then saw your post when I was up unable to sleep at midnight.
    Elizabeth, what.a great explanation for the hospital bed! That sounds like it could work. Along with more people coming to help.
    • CommentAuthorMim
    • CommentTimeDec 30th 2016
    Lindylou, I'm just catching up on things. You've touched my heart, as you have many times before. Your love & devotion is a beautiful will be no good to your partner at all if you get hurt. I think it might be better to do whatever is necessary for the both of you, because you're going to want to see this through all the way. You don't want to be laid up in a hospital or not be able to navigate at all because of a back injury (or any other kind of injury!) I think you will want to be with her in a comforting way. I hope that makes sense because sometimes what I want to say in my brain doesn't always come out right through my fingers!
    • CommentAuthorJazzy
    • CommentTimeDec 31st 2016
    Mim you said it beautifully!

    Lindylou be very careful with your own well being both physically and mentally. As Mim said you will be no help to your partner if you hurt yourself. Have you considered placement? I know that thought is difficult but maybe it's time to look at that option.

    I don't know if it's the winter or just watching Kevan's behavioural problems but I find that I am back to crying at the drop of a hat. Everything seems to open the dam. My Yorkie is forever racing over to comfort me.

    Take care of you!!


    • CommentAuthorLindylou*
    • CommentTimeDec 31st 2016
    Hi all. Hospital bed arrived yesterday. Had to spend the day moving furniture in anticipation of its arrival. Asked my partner's son for help but he did not come through.I took things slowly, emptying drawers, moving drawers, sliding dresser on towels, putting drawers back in and filling them up again. Poured sand on the ramp so my partner could get to daycare. Straightening things up so my brother and his wife could come and have a mini Christmas with us.( I can no longer ask my brother for help since his stroke last spring. He is thrilled the Department of Motor Vehicles just granted him permission to drive again. They bought a car where he can use his left foot instead of his right.)

    The one thing I am enjoying this morning is that our dining room table is now right next to our in-window bird feeder and I've been watching the different birds come and eat the seeds. Afraid my partner is oblivious to this, but it was her gift to me several years ago.

    My cardinal rule is "If there is a risk of getting hurt doing this, do not do it."
    • CommentAuthormyrtle*
    • CommentTimeDec 31st 2016
    Lindylou, I wish I could have helped you with the furniture. I just love to move furniture and I can see you use the same methods that I do when you have to do it alone. Even when there is a sad reason for rearranging things, it usually results in a nice surprise, as you discovered with the dining room table. My husband never could understand my interest in this hobby. He would become exasperated and incredulous when, after trying out a new arrangement, I would move the things back to their original positions.
    • CommentAuthoraham
    • CommentTimeJan 4th 2017
    Lindylou, I'm new here but I can already see you're an amazing caregiver. I agree with the other posts - I'm worried about your physical safety. I know how easily it is to get hurt trying to lift a loved one. I read some excellent advice that was shared from other posters. God bless you & keep you safe.