Tuesday, March 7, 2017

"Is My Mother Still Alive?"

This is a question that came out of the blue! It totally caught me off guard. It was incredibly sad for me as it represented a worsening of confusion. Jim's mother developed dementia in her 60's. Together, Jim and I provided care for her, and she was able to stay in her own home up until a couple of months prior to her death, following a major stroke. We had hired help during the day while we were working, and after work, Jim and I took turns spending late afternoon and into the evening with his mom. He took such good care of his mom! He was always patient, loving, caring and always wanted the best for her.

She died in 1999. When I answered his question about whether she was still alive, he accepted it, was sad, and then moved onto a different topic. It almost was like he was trying to sort out things in his mind.

Jim's level of confusion seems to have worsened over the last week. We've had daily, multiple conversations regarding where we live, what our house looks like, what cars we own, on and on. Fortunately I have pictures of the exterior of our house, as well as a couple of good pictures of our great room.

He's not been upset about it, just very confused. Within minutes of reviewing where we live and showing the pictures, he asks again, and again, and again.  It's incredibly sad to see this loss. The only saving grace about this is that it has not caused him to be angry or upset, just confused.

I have all the patience in the world! I'm not kidding. To me, this is the easy part of helping Jim with his dementia. I am a patient person by nature. And it feels good to be able to offer some reassuring, orienting information that hopefully helps him through the moment.

This morning when he woke up, he said "I've got to get going; I've got to get to work!" He was visibly relieved when I told him he was retired. He wanted to know more details, (when? from where?), and was very happy that he didn't have to go to work.

Regarding practical matters, I'm continuing to learn work arounds, as I face the challenges of Jim's decline. Lately when he makes a sandwich, he takes the knife from the chicken salad and then places it in the mayonnaise. I've thrown out a couple of jars of contaminated mayonnaise over the last week or so. It is not helpful to remind him; he will not retain that information and I risk upsetting him by the reminder ("I know that! You don't have to say that!"). So my work around is to buy mayonnaise in the squeeze bottles. No possible risk of cross contamination, and it is pretty easy to use.

Laundry is abundant! Jim has several changes of clothes as he gets ready for the day. All of the changes end up in the laundry. So the white polo shirt he put on for 5 minutes, and then took it off to put on a t-shirt, ends up in the laundry. He sweats profusely during this time period, indicating to me how stressful it is to find just the right clothes to wear for the day. I feel so bad for him. My attempts to help him pick out clothing appropriate for the weather/situation generally are not helpful for him. So, I've learned to just let him struggle through this, rather than try to help. My attempts to help just seem to add more stress.

Jim's sudden worsening of his dementia symptoms makes me wonder if there is perhaps a vascular dementia component. He was diagnosed with hypertension and high cholesterol many, many years ago (his dad died of heart disease when Jim was only 20). He was not properly treated for his hypertension, high cholesterol until he came under the care of Dr. C. So vascular dementia is certainly a possibility. In addition, he was a smoker. He finally quit, after struggling for many, many years with unsuccessful attempts to quit.

None of this really matters of course. It is more of a clinical curiosity and represents my need to understand what is happening.

Jim asked today (several times) if we could go check out his car. Each time I responded that his car was 1200 miles away, and that we had decided to wait until winter was over before heading home. Each time, he accepted this explanation.

And so, another week has passed, and unfortunately I am witness to another significant decline. I am so looking forward to going home. My plan is something that helps me to stay strong. I know that the support groups are going to be a big part of my survival in the future.

I have to give a shout out to Jabberwalky, who has been an incredible support to me, both through her blog and through our correspondence. She is the one who helped me to understand that once you have accepted your role as caregiver, things get a bit easier (it is never easy, of course). In other words rather than trying to fit caregiving into your life, you recognize that caregiving is your life. Once you have accepted that, everything else seems to fall into place and flows just a bit easier.

Writing this blog is so therapeutic for me. But I also hope that others who may be traveling this sad journey of dementia will find some support as well as camaraderie. Thanks for listening, and as always, I so appreciate each one of you.



26 comments:

  1. We went to visit my husband's cousin at the assisted living facility and was so sad to see the changes in this brilliant lady. And yet, we were heartened to see how she hadn't forgotten her love for her husband who still watched over her carefully and lovingly. Your husband is very lucky to have you.

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    1. Thanks Kay. I'm reminded that people often remember how others make them feel. They may not remember the words, but they remember how they felt.

      Watching the decline of someone you love and care for is so sad. I'm sure your husband's cousin appreciates your support.

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  2. You have the patience of a saint. That had to be hard, telling him about his mother's passing ...

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    1. Hi SJ. Yes, it was hard to tell him. Sometimes when I "fill in the blanks" for him, I don't know if he then remembers, or if he is hearing like it is brand new information.

      I don't always feel patient, but I try hard to practice patience, knowing that to do otherwise will likely just aggravate the situation.

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  3. You are right Carole, to date I am still trying to fit care-giving into my life. I have a part-time job,which today it is confirmed I cannot continue nor can I leave the home for more than an hour. My mum was alright the past months, but today when I came home she said she felt like jumping down. Guess she had the total memory lapse again. But within an hour she was back to a more cheerier self.
    Guess Care-giving is my life now!

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    1. Hi Swift. So sorry for what you are going through. The nature of dementia is often one of intermittent confusion. It makes our caregiving all the more challenging, as we never quite know what to expect.

      I think one of the biggest changes for me came when I realized that Jim could no longer be left alone for even a short period of time. It looks like you are at this point. I hope you are able to find some support for the care of your mum.

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  4. I heard someone say 'acceptance is the answer' and at the time I didn't know what she meant. I know now. It's a real learning curve for you and I pray that you have the strength to maintain your understanding.

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    1. Hi Valerie. Yes, "acceptance is the answer". I imagine it is a transition that all caregivers go through. Thanks so much for your kind words.

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  5. Oh Carole, it sounds like you are dealing with changes almost every day - hang right in there! Hardly gives you time to get used to anything.
    Thanks for the shout-out, you've been just as much a support to me on this strange, strange journey.

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    1. Hi Jan. Thanks for the encouragement. It's a rollercoaster of changing emotions for Jim, and for me. And yes, it is a very strange journey. I can't imagine going through this alone, with no one to commiserate with. So for you, and all my faithful readers I am so grateful.

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  6. I am so glad Jim is receiving the same patience he had shown for his Mom. You amaze me how you do not rail against the changes but seem with ease to seek a plan B then slide seamlessly into that such as the squeeze mayo. I don't wear a hat but if I did it would be off to you.

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    1. Thanks Patti, for the kind words. I hate dementia and what it has done to Jim's brain. I have a lot of impatience for dementia, but of course that is separate from who Jim is. I try hard to remember that separation, especially when it gets challenging.

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  7. I have a blogging friend who is doing it all by herself, and she keeps me informed of how hard it all is. I am going to send her your website and hope she is able to find some solace that she is not alone in all this. :-(

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    1. Thanks DJan. It does help to know we are not alone on this journey. The opportunity to reach out and connect with others who are understanding is invaluable.

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  8. Dementia could be hereditary. My mother and 4 of her siblings had it.

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    1. Yes, some types are hereditary. I'm hopeful that research will bring further understanding, and perhaps someday a cure to this dreadful, deadly disease.

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  9. My friend DJan gave me a link to your blog. I read your current post and will come back and read more of them. My husband was diagnosed with MCI back in 2008 and it turned into Alzheimer. I see that your husband has dementia – what type of dementia? I know that dementia is not a specific disease; I understand it is like “mental illness” – it covers many types of problems with the brain, and 80% of dementia is related to Alzheimer. I am the only caregiver to my husband, 24/7 with no support, or support group. I have a blog but rarely talk about it. If I am very stressed I may send an email to a good blogging friend, like DJan, who understands. Alzheimer patient will recall long ago memories. My husband will ask where his sister is – she lives in Columbus, OH, and we have not seen her for quite a while. He thinks she could be somewhere in the house. But he won’t ask about our two grown daughters. He has zero short term memory and it is not easy. I am not a patient person so it is very stressful for me. My husband Jim is a patient of Emory Brain Clinic in Atlanta, GA., and they told me that he is now in the “middle stages” of Alzheimer, but they have no idea how long this stage will last for him.

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    1. Hi Vagabonde. I'm so glad that DJan gave you this link. Being a caregiver can be so difficult at times, especially if you are doing it alone without any support.

      There are three other blogs that I would recommend; https://welcometodementialand.com
      https://jabberwalky08.wordpress.com
      https://aliceinmemoryland.com

      All three will be a wealth of inspiration, information and support for you as you travel this dementia journey. I believe that Alice (the last link) goes to the Emory Brain Clinic in Atlanta GA as well.

      It sounds like your husband is in the middle stages, similar to my husband. As far as the type of dementia my husband has, I'm not sure. My guess is that it is a mixed type of dementia. He has an appointment in April with a gerontologist for further evaluation.

      The challenges with the loss of memory are so difficult! I have learned that "the truth" is not what is important in communicating. What is important is what will help to ease the stress, fear, anxiety of our loved one, and this in turn will help to reduce our stress as well.

      Dementia is a tough, tragic disease. You are going to need more support; no one should try to do this alone. I just sent you a private email (from your blogger profile page).

      Take care, and thanks for commenting and sharing your story.

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  10. I think that it will be good for Jim to be back at home in more familiar surroundings, and I am sure that you are looking forward to it. Also, your plan of bringing support people in a few times a week once you get home will give you some much needed respite time. This is a difficult journey that you both are on.

    Jude

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    1. Thanks for your comment Jude! Two weeks from today, we will be flying home. I received a script for a mild sedative for Jim, so I am so grateful for that! It will be a relief to be home, that is for sure.

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  11. If there is any luck in being a caregiver to someone with dementia, yours is pretty good as was mine when I shared care of my dad. Jim accepts your explanations and seems to trust you which makes a world of difference. My brother was not so luck with his wife. She fought him and anyone else who "corrected" her miss-information. Patience goes a long way and your willingness to learn from him what is helpful or not shows how special you are.

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    1. Hi Jean. Yes! I feel so fortunate that Jim trusts me. That means everything in the world of caregiving. It sounds like you and your family have had more than your share of challenges with dementia. Thanks for your kind words. I know that the road is a long one, and I hope to stay strong for Jim as we travel through this together.

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  12. "Work arounds" you said -- they do seem to be key in much of what you're doing -- that, and focusing on avoiding creating stress. Am reminded you previously wrote of not trying always to correct him as often many things don't matter -- a matter of common sense judgement. Am sure this increased confusion he's having is quite challenging and hope it's minimal for the remaining time before you return home. Once he's home perhaps he'll settle back to a less unsettling state. Glad you have those photos, as I know for many there's a stage when the visual stimulation with pictures is much more effective than the auditory -- words they're hearing, but am sure you're aware of that. Thinking of you and care for yourself.

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    1. Hi Joared. You are right, I never correct him any more unless it is an issue of safety. He often says something that is totally out of context/unrelated to our conversation. I have learned that if he has said something that I cannot interpret (which is often), I simply say something affirmative, or if it is a question he is asking, I may just say "I'm not sure" or "maybe".

      Before, when I was desparately trying to understand everything he said, he would get very angry/anxious/frustrated at my attempts to understand. I have found it is more relaxing for both of us, to just go with the flow, be agreeable and neutral. It seems to work best.

      Thanks for your comment.

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  13. I read your blog posts with great interest. Even though we are (still) fine, it is good to get a look at what might be. We are 75 and 79 years of age.I do not worry though. For today, we are happy, healthy and still blooming.

    I hope a flower or a ray of sun makes your day somehow beautiful Thank you for sharing.

    Barbara Torris

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    1. Hi Barbara. Thanks for your comment. I enjoy reading your blog too. Healthy, happy and blooming; what a great description of a life well lived.

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