The dementia companion cards arrived! I like how they look. I'll always make sure I have a few in my purse so that I can feel more confident when we go out and about.
I've known for some time that I needed to find some additional support. Eventually, I will join a support group and I think I will enjoy the process of being a help and support to others, and in addition feel supported by others.
I struggle most with the personality and behavior changes that I see. The other stuff is easy. I'm a helper by nature, so my instincts are good most of the time. I run into difficulty when I feel that I am being wrongly accused, and I know there is nothing I can do about it. It hurts me so deeply. When Jim becomes angry at me over something that he is misunderstanding, it tears me apart. I know he can't help it. His memory is bad and his perceptions are off. It is my personal failing that I can not overcome the hurt that I feel when these kind of things happen.
I know I need some perspective, and I think a counselor could provide me with some guidance. The problem is, how the heck do I find someone that has some experience in working with caregivers? My very close friend Amy (who happens to be an amazing Social Worker!) suggested calling the local Alzheimer's Association and asking them for a recommendation for a counselor with experience in this area. So I did.
I actually have an appointment next week with a very nice person who does an intake interview. She was so nice on the phone! She will let me know about the resources that the AZ Assoc. offers caregivers (and the loved one). She will have ready some names of counselors in the area who have experience working with caregivers. I feel better already.
We meet yearly with our financial advisor. Last year when we went I remember that Jim pretty much just sat there and didn't say too much, other than some small talk. When I think back to that time, it reminds me of how much ground Jim has lost since then. Privately, I called our financial guy a few days ago to let him know what was going on with Jim's dementia. It sounds morbid to talk about it, but I know that I have to plan for the future.
On average, at the point of diagnosis, the life span of someone with dementia is about 1/2 of what it would be if they did not have dementia. (For example, according to the Social Security calculator, at age 70, the average male can expect to live another 15 years. If diagnosed with dementia, the life span on average would be 7.5 years.) I realize this is simply an average, or an estimate. A lot of other factors can weigh in to alter this as well; no one really knows. But it's a reminder that dementia will likely shorten your life span. This has implications for timing for social security benefits, investment strategies, planning for care at home etc. Lots to think about.
Next week Jim and I will meet with our advisor for a brief, general meeting. A few days later I will meet with our advisor by myself, to discuss long term financial planning for Jim's care etc. The discomfort I feel in "sneaking around" like this is very real. But at the same time, I feel that I don't have too many options at this point.
I'm in the process of changing our primary care doctors to a gerontologist who practices in our area. She comes highly recommended, and I look at it as a good opportunity to provide Jim with quality care as we travel through the next stages of life. Also, by both of us having the same doctor (we don't, now), it will be easy for me to communicate any concerns. Years ago, she diagnosed my dad with Lewy Body Dementia . No one else knew what was wrong with him. She, being the expert in gerontology immediately knew what the diagnosis was. It was a relief to finally know what was wrong, and she provided wonderful support and care for my dad and our family.
Looking to the future. So much to think about. Once again, thanks for stopping by. I can always count on my caring, faithful readers. My friend Amy (who reads this blog) mentioned how wonderful and supportive the commenters are. I so agree:-)
16 comments:
Good job. I'm such a believer in planning for the future. So much easier to edit a plan than to create one from scratch. Working on a plan for the future keeps your attention focused on the important. You will never be sorry about the time invested in planning for the future.
Thanks Linda. I'm a planner too! There is comfort in knowing that I am doing all I can to prepare and to provide for the best care possible for Jim.
It is NOT a personal failing that you take his remarks and actions personally. It is because you are a feeling and caring human being. I don't have experience with dementia, but my husband died of brain cancer and it affected his personality in that he said hurtful things and acted irrationally at times. I was also hurt by all this. I really never learned not to take it personally, but I knew I shouldn't. I'm sure a counselor will be of great help to you.
All I can say is that you're doing the right things, and I admire your honesty and your courage.
Thank you for sharing all this with me. I don't know if I will ever be in the same boat, but as part of a couple in our seventies, it's all good information just in case. Plus I really am learning how to go forward in a very difficult situation. Sending you lots of love from here.
Thanks for your comment Mary. I'm working my way through this. I've always believed in self control and taking responsibility for my actions and my emotions. I know it is not as simple as that. And I expect working with a counselor will help me to gain a better perspective.
I'm sorry to hear about your husband. You know only too well how hurtful those kind of changes can be.
Thanks for the encouraging words Tom.
Thanks for the love DJan. Sending some right back to you :-)
It always feels so good to be writing about this. Sometimes I sit and wonder exactly what I will say, but then the words seem to flow. I know that you experience that as well sometimes on those early Sunday mornings :-)
That card is a blessing both to you and to anyone who may not be understanding.
I am so glad you are going to seek out a support group. I have found my Cancer support group invaluable. First it is such a relief to be with others that totally understand where you are. You will feel yourself actually relax, plus the sharing of hints and tips is so worth it.
Thanks Patti. I appreciate your perspective. I'm looking forward to feeling a kinship with others who are in similar situations. You are right; the hints, tips, advice that are shared will be invaluable. Hopefully I'll have a few of my own to share :-)
I love the way you are approaching this whole dilemma. You are honest with yourself and those that can help you.
Have a wonderful day...it is a gift!
Yes, each day is a gift! I am so aware of that. Thanks for your kind words Barbara. This journey certainly has its challenges, but I am so grateful for all the help and support I am finding along the way. And that includes, of course, all the kind readers who comment and offer up such kind words of encouragement and support.
It is good to talk to a financial advisor regarding the future, especially when your husband has dementia.
I agree Gigi. It definitely puts us in a different situation, now that we (I) need to think about home care for Jim in the future. Fortunately we have a great advisor, and I'm glad I can count on him for his expertise in this area.
Each day is a gift how wonderful you said that. Your words inspire me to be positive and grateful.
Thanks for sharing. You are so caring and patient. My husband is not nearly as bad, and I resent him sometimes.
Hi DDD. Thanks for your comment. I'll admit, I'm not always feeling real positive. Sometimes I have to readjust my thinking and check my emotions. Sorry to hear about your husband. Sounds like you have some challenges too. Thanks for stopping by, and feel free to come back. This is a great group of folks, and we learn and help each other.
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