Every day. Yes, it is every day. Dementia does not offer any days off. Not for Jim, and not for me. But, I feel like I am emotionally starting the transition that will help me to find peace and contentment with this altered life of ours.
One of my fellow dementia bloggers and I have been corresponding a bit my email. She has been "in the game" for a longer period of time than I have been. Her gracious and helpful emails have just been a breath of fresh air for me. She observed that once she accepted that caregiving is her life, things started to flow a little easier. This, as opposed to trying to maintain what was a "normal" life, and working in the caregiving around life as she knew it.
So there you have it. Sounds simple enough, but I know that this transition is psychological and emotional. It is a journey that every caregiver must go through. I've been doing a lot of reading lately related to dementia caregiving. As I read about others' experiences it helps me. It helps me feel less alone, it gives me hope that I can do this, and it gives me some guidance for this journey.
Jim has some compulsions that are difficult for both of us. It causes him anxiety, and in turn causes me anxiety as I try so hard to make things right. He is very compulsive about clothing. He always was a very snappy dresser. With the progression of his dementia, this has turned into an obsession over the minutiae of his clothing articles. Almost every day, we are headed to one store or another in search of t-shirts, blue jeans, socks, long sleeve shirts, the list goes on. NONE are acceptable. He will focus on imperceptible imperfections, as he sees them, and then rules out any purchases. He gets so frustrated.
I feel so sorry for him. I can't imagine how hard this must be for him. I'm getting better at just saying "let's go look in another store". At least it gives him a purpose, and something to do. And, it works much better than trying to talk him into buying something that he sees as imperfect. That just doesn't work, and makes him even more frustrated. When he sees the gerontologist I will make sure she is aware of this issue. A little medication to ease his anxiety would likely help a lot.
I recently discovered some new local resources through our county's Office of Aging. They operate separately from the Alzheimers Association. They offer courses, classes, consultations, and resources for the caregiver. In addition, I discovered a support group that is even closer to my home, with meetings every other Thursday. I'm looking forward to attending this support group. It is getting harder for me to leave Jim alone, even with all my reassuring notes I leave him when I have to leave. So I'm grateful to have a group so close to my home. Hopefully it is a good fit for me.
I drove him to his haircut appointment yesterday. It was interesting to me that as we travelled along the highway, he was uncertain which exit he should take. This is after many, many years of driving here to get his haircut. It just reinforces the decision I made that I need to be doing all the driving.
Holidays will look different this year. Usually family (30+) gathers at our house. This year, Jim and I, my disabled brother, and my brother whom I am very close to, and his family will take a Wegmans prepared T'giving dinner to my mom's. There will be 8 of us. Disposable dinnerware makes clean up very easy. I am so relieved to not have to think about a huge party at our house!
Today we went to Home Depot and purchased a very cute artificial Christmas tree that is is only 4 1/2 feet tall. I can carry it by myself up and down from the basement. The last couple of years we have struggled to get our 7 1/2 foot tree up and down the stairs. Last year was very shaky. Jim has definitely lost some of his dexterity and balance.
Downsizing holidays, a smaller Christmas tree, these are all signs of my transition to accepting that caregiving is my life. I'll continue to hope, plan and strive for the grace and understanding that comes with thoughtful caregiving.
Another post has been written, and as always, I find it therapeutic to be able to share my thoughts with my dear readers. So thanks for stopping by, for listening and for caring. And until next time....
20 comments:
Perhaps I've missed something but I don't recall if you have children and grandchildren or if they're near. I''m trying to process your friend's statement that it got easier once she accepted caregiving is her life. Not sure how I feel about that. Caregiving is my primary and first responsibility these days but not my life. I may be home bound but I still have a life apart from him and caregiving. Granted most of it is through the Internet but I'm hoping to flow back into life once my role as caregiver is finished.
We have no children, but we are fortunate to have several nieces and nephews.
I'm sure I did not say it as eloquently as she did. Once you have accepted that caregiving is your life, it becomes less of an internal struggle.
I know that I still grieve the life that we had, and now have lost. It will never be the same. At times I feel angry or resentful that we can't still do the things we used to do. Other than Jim's dementia, we are both very healthy. We looked forward to travel and many other adventures. The reality is a lot of this just is not realistic, given his limitations.
So I think the point is that by accepting that this is the new reality, it allows you to move forward in a more positive way. Once you let go of the resentment, the anger, the disappointment, it opens up your heart to acceptance and making the best of your life together.
And I would add that of course you are right, that we still have our own interests that we can pursue. I suppose it is a delicate balancing act. I'm still not very good at it, but I'm working on it. Thanks for your comment Linda. I always appreciate your input
I hope you find the support that a caregiver needs. I joined a local group when I moved back to care for my mother and dad. Mother was bedridden and had dementia. There was much to learn in a short time frame, and I can't begin to tell you how helpful the group was. Just telling me about ways to handle difficult situations, was great. Now I just have Dad at 93 to care for. Thankfully he is sharp mentally, and showing no signs of dementia.
Hi Brig. Thanks for your comment. You know first hand the struggles of a loved one with dementia, and the responsibilities of caregiving. It is encouraging to me that you found the support group so helpful. I am looking forward to my first meeting.
Just took a look at your blog. I like it!
Our group was nearly all family caregivers, husbands, wives, daughters, and a few that were related through marriage. We were moderated by professionals, which was extremely helpful for providing us with helpful info, and how to implement it.
Thinking positive thoughts for you!
FWIW loved ones can have issues other than dementia that result in a caregiver having to forego life activities they might have expected, so can learn from your coping and adjustments as I think of some years I experienced. Their being aware of declining can present its own set of mental complications. I do realize dementia presents unique issues that differ, but just wanted you to know your sharing can benefit more than just those with dementia.
Through all the difficulties you seem to be coping extremely well. Is there a chance of getting a carer to 'sit-in' if you need to go out?
A friend of mine, in the same position as you, gave me a book full of advice when we thought my man was heading towards dementia. The book was issued by the medical team at a dementia clinic. I didn't need it in the end when cancer was diagnosed.
Hi Joared. Thanks for the reminder that there are many types of caregiving. And, some of us find ourselves sandwiched in multiple caregiving responsibilities. Sounds like you know from personal experience the adjustments that are needed for caregiving.
You make an important distinction, in the case where the person being cared for is aware of their own decline. The psychological adjustments can be so difficult. I imagine that each situation is unique. I think as caregivers we are fortunate when we reach out to others, find some support, encouragement, and then are able to give back to others in the same way.
Thanks for your insight Joared.
Hi Valerie. Thanks for your suggestion. I actually do a modified version of this. His close friend, Mike, picks him up once a week and they have lunch with the guys at a local restaurant. They are all guys he grew up with, so he enjoys it. His long term memory is still pretty good, so he does pretty well in these types of situations.
I am definitely a reader. Through my own internet searches and from kind suggestions from others, I have discovered a lot of good resources.
You had a very challenging caregiving situation, with both dementia and cancer. I imagine you could write your own book, given all of your experiences.
It's a good idea to have a smaller tree and a smaller family party at this stage in your life.
I hope someone in the support group can offer solutions for times when you need to leave and want him kept safe. It is wonderful that he and you have Mike to give you a break but I know you could use more help. It is so easy for us to relate to the caregiver but you do make a great point about what Jim is going through. There must be times he is so frightened. Hope the new doc can give him something to ease his anxiety which in turn will ease yours.
Yes, I agree. I want to make Jim my priority, and not be stressing out over entertaining for a large number of people. Thanks for your comment Gigi.
Thanks Patti. We have a couple of guys, about Jim's age, whom we now hire to help us do house and yard related stuff that Jim is no longer able to do. They are both great with Jim. I have to think this through more, but I may hire one of them to occasionally come over on some pretense, and spend time with Jim.
Jim is OK with me being gone for short time periods (leaving notes etc). But just last week I had 3 things in one day where I needed to leave the house. He did OK, but it was a stretch. And he sure was happy to see me get home.
I'm guessing the support group will suggest all kinds of things that I haven't even thought of. I'm no longer nervous about going; I'm really looking forward to it.
I continue to count my blessings, as my husband and I, at 74, seem to be in great physical and mental health. I know things could change in a flash, but reading how you are coping certainly is helping me to stop worrying about the future. Sending you lots of love and I'm sure glad I found your blog. :-)
Thanks DJan. You are right, good health should not be taken for granted. I'm grateful every day that I have the ability to be here, be healthy, and be supportive for Jim. If our situations were reversed, I know he would do the same for me. So happy for you; your active lifestyle certainly contributes to your good health, both physical and mental. Thanks for your encouraging words :-)
Thanks for the kind words, Carole. I appreciate the wisdom of simplifying holidays at this point in your lives - not only will it help you have a better time with less energy expenditure, but also lets family know that things are changing. I think families can have a hard time initiating changes but when you take the lead, they can follow.
Your support and encouragement to me has been just amazing. One of the blessings of this terrible disease is the outreach and support from others who care.
The family holidays will change, and I think you are right, it will be a segue to letting family members know about what is happening to Jim.
Carole, my first husband passed away unexpectedly at a young age, leaving me with three small children. I know this is quite a different situation, but one of the things that I learned at that time was how to accept the help of others, and even to ask for help. I had always been a very independent person, thinking I could do it all myself. I discovered that I could not, and I am so grateful for the friends, family, and colleagues who rallied around at that time. I also went to a support group (something I was quite anxious about), and it was immensely helpful. I didn't feel so alone in my grief. We didn't have blogs back then, but your blogging also is a wonderful way of reaching out.
Jude, I am so sorry for your loss! I cannot imagine how hard that must have been with three small children. You bring up a good point, that it is important to accept help, and also to be ready to ask for help when needed.
Like you, I'm a real do-it-yourselfer, much to my detriment at times. It's hard for me to ask for help, but intellectually I know that as time goes by, I will need to do so. Thanks for your comment and your encouragement!
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