We went to Philadelphia last weekend. We both enjoy this city, rich in history. We stayed downtown and used the Phlash bus to get around. The Phlash bus runs a continuous route that takes you to all the different historic sites. We did a LOT of walking as well. We had a wonderful dinner with friends of our's on Sunday night. A good time was had by all.
I did all of the driving down, and most of the driving to go home. Jim didn't seem to mind, thank goodness. Even with our GPS and with me helping to navigate, it would have been too much for him. He does OK driving locally, but anything new and different causes anxiety, frustration, and generally makes for a miserable time for both of us.
Being in a different city brought to the surface the many limitations he has when he is out of his element. I heard him ask with amazement many, many times "how do you know that?" The funny thing is, he does not view it as a deficit that he has, but rather he sees me as being very smart.
The last few times we have traveled he has forgotten to pack some pretty obvious things; socks, favorite sneakers etc. On this trip I surreptitiously checked his bags prior to leaving and was then able to casually say "did you remember to pack your ..."
I planned our activities so that we would enjoy the best that Philly has to offer. We managed to check everything off our list! Jim struggled with the details of our plans; I just focused on telling him that we were OK. He responded well to reassurances that we were on the right bus, at the right location, etc.
There are different descriptions for the stages of dementia. Based on this one http://www.alzheimers.net/stages-of-alzheimers-disease/ I would say that Jim is in stage 4; moderate decline. I'm guessing that it is not an exact science and that there are probably variations that don't hold true to the description. Plus, some days are better than others. And some are worse.
I am learning a LOT about home maintenance. Jim has always maintained a list of resources for any house related problems. I never really paid any attention to it before, but now I absolutely need to. He is not really capable of handling a phone conversation with any complexity in it. He gets confused, forgets what the issues are, leaves out critical information etc. So now it's up to me. I'm getting used to it.
From what I have read, denial is fairly common in Alzheimer's dementia. It is not necessarily an intentional denial, but rather a lack of insight. I've also been reading about doctors who are not forthcoming with patients in giving them a diagnosis of dementia. Reasons for this include fear of damaging their relationship, concern the patient is too fragile to handle the diagnosis, trying to protect the patient. It must be frustrating for physicians, as there is no cure, no fix. Doctors will sometimes prescribe cholinesterase inhibitors (such as Aricept). But this is often done at the request of the patient or family. Research shows that while the medicine may improve cognitive functioning for a year or so, it does NOT stop the progression of the disease. How sad.
Our next trip is in August for a wedding. Travel plans are underway, and I'm anticipating a wonderful weekend celebrating with friends.
Memory for 2. I'm ready for the challenge!
16 comments:
Good for you. At least you're still able to have a good time even if you have to have the memory of two.
We are in the middle of an extended family crisis in Bob's family. Lady is 82, knew she was having memory problems and went to doctor who gave her medication and then referred her to a psychologist for testing and counseling.
About six months later she enters a house that 's not the one she meant to visit. In the process fell and badly injured her leg. Hospital time for her. Discovered she also had pneumonia. Drs. thought her thinking might clear up once infection cleared up. It did not. Rehab for two weeks, then two weeks in son's home in another city, then into assisted living. Very happy for two days then received a phone call from friend in the city where she lived. This person cried and begged her to come home. Our relative went berserk. Back to son's home. Finally waited 12 hours in ER of county hospital to have her admitted to the psych ward. That now makes her a ward of the county. Yesterday she was transferred to a private psych hospital to be there for up to 10 days why they get her medically stable and then back to assisted living. The part she was in was $3,100 a month. If she has to go into locked memory care it will be $4,700 a month. Family is devastated. Never in a million years would they have thought such a thing could happen. Mental health care in this country is not good.
Oh, what a sad story. You are absolutely right; mental health care is not what it could/should be in this great country of ours. As the population ages, there will be more of us who will need this kind of support.
Jim's mother was given Aricept when she was diagnosed with Alzheimers. She never really showed much improvement, and she developed unwanted side effects as well.
Thanks for your comment Linda. Sending peaceful thoughts your way and hoping for a workable resolution for this lady and for her family.
My dad was in the clinical trials for Aricept and we could definitely tell the difference when he missed a dosage. As part of the trial he had to be examined by a geriatric psychiatrist every two months. We felt we got an extra two years of at home caregiving because of that med. But of course, as you said nothing stops or reverse it.
I love your story about your husband thinking you are smart instead of him noticing himself slipping. My dad was exactly the same way. Trust is an important element for someone in his situation and it sounds like he has that in you. That's such a blessing in the world of caregiving.
I like your title, it kind of says it all. But it must be some consolation that ... "he does not view it as a deficit that he has, but rather he sees me as being very smart."
Thanks Jean for sharing your experience with your dad. It gives me a different way to look at it. I don't have the responsibilities right now that many caregivers do; those caring for someone in the more advanced stages are especially challenged. Extra time at home for caregiving would definitely be a bonus.
I really haven't allowed myself to think too much about the future caregiving challenges; just a little, enough so that I know it scares me a bit.
Yes, it is a blessing that he is not aware of his deficits. He was a very intelligent man, and still is in many ways. If he truly comprehended his cognitive loss, I can imagine it would be devastating to him. Thanks for your comment Tom.
It is wonderful that you both can still enjoy trips. I think that you are handling his memory deficits so well and tactfully is proof that you really are quite smart.
I know there are no cures now but I do believe we are not far away from a breakthrough. What should give you comfort is that so much money and energy is being expended to find a cure.
Thanks Patti. I hope you are right about a breakthrough. It is a heart breaking disease process that effects so many people.
I am grateful that we can still travel! I would love to do England/Paris next spring, but not sure if that will work out. We always said we would travel more broadly once we were both retired. We'll see.
I am also glad that you are up to the challenge and that the two of you can still travel and visit friends, even if you have to have memory for two people. I love your blog and am glad you are writing here, for all of us who may be dealing with this in the future. :-)
Thanks DJan.By the looks of things, I think you are doing everything possible to stave off any cognitive decline. Such as eating healthy, yoga, exercise, long hikes :-)
But seriously, you are right. We never know what the future holds for us and those we love. I'm glad to be a part of this blogging community!
I appreciate this entry, Carole, and identify with the discreetly-checking-the-luggage, as well as hearing "How do you know that?!". It reallly, really helps to hear how others are dealing with this situation - thanks.
Thanks Jan. It does help a lot to hear how others are dealing with the complexities of cognitive decline. I know that other blogs (such as yours) and people's comments on mine always give me something to think about. We're in this together, as a caregiving community, and it feels reassuring to have each others' support.
It's sad to see a loved one decline in health. If I were on the brink of dementia, I would not want to know the diagnosis and prognosis. It would upset me too much to know.
Thanks for your perspective Gigi. Everyone is so different; I think that relationships require sensitivity in making these kind of decisions. I can tell from your blog that you and David have that sensitivity towards each other :-)
Am so glad your PA trip was enjoyable. Appreciate your sharing your experiences. You are so right that each individual is different and requires unique interventions. Fortunate is the individual who has the sensitivity and support you're providing you husband.
Thanks Joared. I keep reminding myself that we are still early in this journey. I have a lot to learn. I imagine that there will be trial and error, as I continue to try to do my best for him.
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