Tuesday, September 12, 2017

Dementia is Keeping Me On My Toes!

Jim enjoys a glass of wine with dinner each evening. This is relatively new. Prior to dementia, we would enjoy a drink or two on the weekend, but almost never during the week.  I no longer drink alcohol at all. I never was a big drinker and have always had a low tolerance for alcohol. Lately I've been thinking about how I need to be 100%, even during the night given the advancing decline and unpredictable behavior. So no more alcohol for me.

Tonight, for some unknown reason, Jim took his partially filled glass of wine and calmly poured some of it on the kitchen counter. I handled it well, even though it was so unexpected. I quietly cleaned it up and asked if he was done with his wine. He told me no, and then continued to drink his wine. I can't imagine what was going through his brain. He was not upset, we were enjoying a nice dinner, and he was actually in a good mood.

We bought bananas yesterday and at the end of the day I noticed that all five were gone! We bought more today; I put two out and hid the rest. He really is not able to partake of food or drink unless it is right in front of it. Maybe that is why he eats so many bananas; it's what he sees sitting on our counter. He has no idea how to get a glass of water, for example. I've been leaving bottled water out to encourage him to drink more.

Sometimes he'll try to drink the yogurt I put out for him if I'm not fast enough to put a spoon in it. The other day I handed him his evening pills and he promptly put them in his glass of wine! This morning his toothbrush with toothpaste on it went into his cup of coffee on the bathroom counter. And then he brushed his teeth! I didn't say anything; if he didn't mind, then I didn't mind either. Crushed red pepper for pizza was shaken into his glass of wine. These are just some of the reasons why I need to be on my toes all the time.

I have a bum knee. Long story short, I have arthritis secondary to a very old fracture. Eventually I'll need a knee replacement, but in the meantime I'm focusing on non-surgical options. When I told Jim about my ortho appointment he said "who will take care of me?" It was heartbreaking, and he sounded so sad. A rare moment of insight and vulnerability.  I quickly reassured him and told him we will always take care of each other.

I had a cortisone injection this morning and I'm hoping it will work; I should know within a week or so. Jim did great at the appointment. I was ready with my companion card and the office staff were wonderful. So grateful for those cards!

Jim is having increasing problems when we go to our  grocery store, Wegmans. When checking out, he now has a hard time understanding where our order ends (even though I use one of those dividers to separate orders). More than once he has tried to take groceries from the order behind us. And once he kept putting items back into our cart, not letting the woman scan the items! Again, thank goodness for those companion cards!

Wegmans has a delivery service, and it turns out we are indeed within their delivery range. There is a nominal fee for delivery and the price of items is a bit higher, but a small price to pay for convenience and peace of mind. Thinking ahead to this winter, we may need this wonderful service.

Had a wonderful meeting with our financial advisor last week. Geoff has been helping us for several years and has given us great advice and guidance along the way. His company is a fee-based company, which means you are paying for his expertise. There are no commissions to be paid from your investments. This totally eliminates the conflict of interest from commission based firms.

Geoff was so reassuring and encouraged me to use the money we have saved to provide support at this time of great need. He has some fancy software that will predict how long your money will last, given bear/bull markets, how your money is invested etc. He gave me some good advice for budgeting for routine needs and for caregiving support. After meeting with Geoff I have renewed confidence that we can do this, and that all will be OK.  And on top of being a really smart finance guy, he is just the sweetest guy, really caring, and listens very carefully to all concerns.

Given my renewed financial confidence, I contacted a woman who cleaned our house for us prior to retirement. Between my bum knee and Jim's need for my attention and near constant monitoring, I've had a hard time keeping up with cleaning our house. I wish I wasn't this way, but it drives me crazy if my house is not clean. If you were to walk into our house, everything looks neat and tidy as it is easy to keep things picked up. But don't check for dust, cobwebs, floors etc.

I'm hoping Jim remembers Halina. He was always fond of her. I can see some caregiving being woven into this arrangement as well. I expect to meet with her later this week to discuss details further.

So I am feeling hopeful! Kathy will be available mid-October, and Halina will be starting soon. Jim's brother plans on every other weekend. And Mike is always there if I need him. Things are looking up 😊

Thanks for stopping by. I so appreciate each one of you.

28 comments:

  1. Even with your bum knee, your post sounds cheerier than usual. Pepper flakes in wine? Did he drink it? I'm glad that your finances are not a problem and you will get someone in to clean. I can't imagine being able to keep the house and watch Jim all the time. Keep up the good spirits!

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    1. Hi Sharon. No, he didn't drink the wine with the pepper flakes. I simply told him I wanted to get him a fresh glass of wine, and he was content with that.

      The one thing I did not mention in my post is the positive experiences I have with friends. I have a very good blog friend, my mom, and friends who live in my area who are a wonderful, emotional support to me. And, I have you and all the other wonderful readers who offer so much support and encouragement :-)

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  2. I am pleased you now have help in the home. It's worth every penny. I couldn't get on without it. I also have groceries delivered. It started because I was unable to carry the heavier stuff and I now have the privilege of seeing someone else carry it in. I think pride goes out of the door when medical problems occur.

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    1. Hi Valerie. Yes, pride walks out the door and ingenuity and smart thinking walks in! I'm so pleased with the option for grocery delivery. With an ever increasing aging population many seniors will need something like this when illness, disability, limitations set in.

      The other day I was struggling with opening a jar; I have one of those grip openers, but it didn't work. Time to get on the internet and see what out is out there.

      Thanks for stopping by Valerie. P.S. I enjoy your blog! You are a very creative writer.

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  3. I always look forward to your posts, because it's reassuring to me that there are ways to deal with almost everything, including dementia, if you work hard at it (which you do) and take the help you can find (which you also do). I know there are hard times ahead, but you certainly do seem on top of things at the moment. Sending you lots of love and virtual hugs. :-)

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    1. Thanks DJan. I'm grateful for the multitude of ways I have discovered how to react/respond to Jim and his behaviors. I've learned a lot from others too, along the way. I'd love to think that this blog can be a resource for others walking a similar journey. Sending you love and hugs right back :-)

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  4. Grocery delivery is the best. When my parents were living independently, they could not drive to the store anymore so my husband and I had to do the shopping for them. In addition to our own of course. We started using Pea Pod and that really helped!

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    1. Hi Roberta. I hadn't heard of PeaPod, but just looked it up and looks like it's a great service. Wegmans uses Instacart for their delivery.

      We have to use whatever help we can get to keep our sanity. The challenges in caring for parents/spouse with chronic illness can really take a toll on the caregiver. Thanks for stopping by Roberta.

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  5. Carole, I have the best jar/bottle opener ever. Many on the market just do not work for people with ageing fingers (me) but I found one that opens anything. It is available on Amazon and is not at all expensive. I took a photograph of it which I cannot send because I don't know where you are, and I cannot put it on here ... so take a look at my blog - in the side bar - and you will see it.

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    1. Wow, thanks for the tip Valerie! I will definitely check that out. I love Amazon. Ever since Jim became so compromised, I have used Amazon for a lot of my shopping. What did we do before the internet???!!!

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  6. Call in the cavalry! Support on its way! Etc, etc. Great to hear of these possibilities. I know what you mean about keeping house - it's actually been a lot neater and tidier recently because puttering around straightening is one thing I can do more of while we're home more, than when we were out doing stuff all the time. The garage is getting a work-over now, and it's very gratifying, in a world where gratification is a bit thin on the ground. But floors, dust, etc - another story! Hope it all works out - will feel good, I'm sure.

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    1. Hi Jabberwalky. Yay!!! Help is on the way! Actually just had a very challenging morning with Jim, but Dr. S to the rescue again. Medication adjustment made this morning and hopefully will help. I'm feeling like it's important to get the behaviors as well managed as I can, so that my support system feels safe and secure and not too overwhelmed.

      Love your comment "in a world where gratification is a bit thin on the ground." So true! Take care.

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  7. The grocery delivery and help with house cleaning seems a really smart thing to do. You have enough on your plate and if those two alone were taken care of, it should give you some ease. I am also glad you have such a support team. All this is hard enough but would be brutal with out help.
    Pepper in wine? Pretty sure that won't catch on but who knows:) My old garlic in coffee post gets hits every day.

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    1. Ha! I'll have to check out the garlic in coffee post :-)

      I'm grateful every day for the support I have. Mike came to my rescue this morning when Jim was having a particularly difficult morning. Don't know what I would have done without him.

      Looking forward to Kathy next month, and who knows, maybe someone else will be in the wings. Given Jim's good response this morning to Mike I'm thinking that a male caregiver may be a good addition. Thanks for your comment Patti.

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  8. I am so relieved to read that you will be getting assistance. That's why the both of you worked so hard all those years, to be taken care of in time of need and this really is a time of need. From the last post events seem to be getting more helpful and pray for you that will. God bless. -N

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    1. Thanks N for your comment. I'm grateful for the support network that is forming. I look forward to some help on this difficult journey we are traveling. Thanks for your prayers and good wishes.

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  9. Knee replacement surgery would help you, but physical therapy appointments would consume so much of your time.

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    1. Your right Gigi. At this point I really don't have enough support to go forward with surgery. But the cortisone seems to be working, so I'll stick with that for now. There also Euflexxa injections that work differently than the cortisone, so I think I'm good for a while. Thanks for your comment Gigi.

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  10. Carole Love your blog! Caregiving is hard work!great that you found grocery delivery and housekeeping no w you need a respite worker or family member to give you 24 hours break a week! Maybe your hospital social worker could link you up! My husband did this for 2 years every weekend for family!it helped the caregivers a lot! Prayers and hugs!

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    1. Hi AWmom. Sounds like your family has had first hand experience with the challenges of caregiving. One recent change I've noticed is that Jim no longer questions why Mike shows up unexpectedly. And when Halina came the other day, same thing, no questions at all. It makes me think that perhaps we are at that point where I can bring other caregivers in on a more regular basis without Jim questioning/objecting.

      He is desperately trying to make sense of his world, and in addition, he has these hallucinations so he thinks there are people here all the time anyway! For these two reasons I think I may be at a turning point where I can bring more help in.

      Thanks for your comment and suggestions; I so appreciate your kind words.

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  11. As I am wont to remind my spouse it isn't the quantity of friends you (think Facebook) have but the quality (the ones you can truly count on). And then there's our two mottos... We're a team and we keep on truckin. :)

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    1. Hi Ray. Love your two mottos! "Keep on trucking'" Now that's a phrase I haven't heard in a while. Probably dates us that we are familiar with it :-)

      So, so true, about the quality of friends. I'm always shocked when I learn that some people have hundreds of friends of Facebook. I don't even know that many people! Thanks for stopping by Ray.

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  12. Carole, your financial advisor sounds like such a great guy. It is good that you have someone that you trust to advise you on investment management. It reduces one big souce of worry -- finances -- when you already have so much else on your plate.

    I am so glad to hear that your support network is expanding. I went through a difficult time in my life years ago, and was astonished and grateful for the ways that people reached out to help. I also learned how to accept help, which was something that I hadn't known how to do before.

    Jude

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    1. Hi Jude. The financial confidence to go forward to obtain the help I need is invaluable.

      Had a great appointment with Dr. S. today. More about this in a future post. I will say though, that she is a tremendous partner for me in Jim's care. I have renewed hope, and feeling better overall about our situation and my own mental health.

      The physical and mental toll on caregivers is well documented. I know that I need to take care of myself, in order to be a good caregiver for Jim.

      Thanks for sharing your experience. When the going gets tough, that's when we really need to be able to reach out and accept the help that is offered.

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  13. Pleased to hear you're going to be having some support soon -- that you're reassured this will be financially viable. Can certainly see the challenge of what he might take as food and hope it wouldn't begin to include other items, but expect you keep them where they wouldn't be accessible. Hope you get some pain relief for knee until can get the needed surgery.

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  14. Meant to add years ago after she died, I brought home my mother's inexpensive Swingline can.opener that easily adjusts to any size. Recently I've been gad i did as find it to be exactly what I need since I hadn't wanted any of those fancy and expensive electric powered ones.

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    1. Oops...I should have said jar opener.

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    2. Hi Jo Ann. I remember those Swingline openers! Guess that dates us :-)

      Yes, so far I am able to "hide" food items. He doesn't seem to go looking in the pantry cabinets. And if he should open the fridge/freezer, I almost always hear that, and am able to help him find something reasonable to eat.

      Jim is transitioning to a new medication which hopefully will help with the agitation. Once his behaviors are better controlled, it will be easier to bring in some help. Dr. S confident she can achieve this through medication management. So grateful! More to follow in a future post.

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