Friday, April 28, 2017

"His Dementia is Very Advanced."

Why were these words so shocking to me? Perhaps because it was the first time I heard a medical professional confirm what I already knew.

There are times where it all seems like a bad dream, as if it is not real. How can this possibly be happening to us?

These past two weeks, there seems to have been a further decline. Every day, there is at least some lapse of his memory as to who I am. It occurs in the early evening or when he first wakes up in the morning. Sometimes, it is both.

Yesterday afternoon, just after lunch, he started talking about how the police were watching me, that I was a suspicious person, and that the police thought I was threatening.  I used diversion, turned on the TV, and it seemed to break this train of thought.

Jim's first appointment with Dr. S. (gerontologist), was late yesterday afternoon. The office staff are wonderful! We arrived 10 minutes early, and they took us right in. I provided up to date medical information and background, as well as a copy of his Health Care Proxy and Power of Attorney.

The nurse attempted to administer a Mini Mental State Exam (MMSE). This did not go over well at all. Jim told her that the questions were childish, and that "people have been after me for 20 years about this!".

At this point, Dr. S. came in to examine Jim. Through a skillful interview process she was able to ascertain his mental status. Jim did not object to this part of the evaluation. Although he did ask her to "Stop yelling in my face!".  (Over the last year or so, Jim has had a heightened sensitivity to volume of speech and any noise. I wish I had thought ahead to let the staff know this.)

While the nurse was drawing Jim's blood, Dr. S. reviewed with me her clinical findings. Her assessment that his dementia was very advanced really took be aback. She would like imaging of his brain (I expected this), but she is realistic that he may not agree to this.

We both agreed that the number one priority for Jim was to help him with his anxiety and agitation. She has prescribed citalopram at a reduced dose to start, to be titrated up if tolerated. This medication is often used to treat depression, but it also is used for treating anxiety and panic disorders.

Her plan is to start Aricept after six weeks of the citalopram. By starting just one medication at a time, it provides a clearer evaluation of the clinical response to each medication. She reminded me that medications like Aricept improve memory "only a little bit". It may help some with activities of daily living. Here is an interesting article that discusses the marginal improvements that are seen with drugs such as Aricept.

I'm not discouraged by that. I've known that cholinesterase inhibitors do not stop the progression of the dying brain; it simply improves some of the symptoms for a period of time (12 - 18 months). It doesn't help everyone, but does help some folks with dementia. Many times it is viewed as a way of delaying the need for institutionalization.

My brain is spinning. At times it just seems overwhelming. I'm hopeful that the citalopram will help Jim with his anxiety. This in turn will allow me to line up the help I'm going to need for Jim's future care. His agreement to others being in the home is key to everything.

Jim signed the Power of Attorney in 2012, giving me the power to act on his behalf. Five years ago! I knew then that I would be needing that POA for Jim. It's hard to remember exactly what his deficits were at that point, but they were such that I knew I had to get our affairs in order. I'm so glad I did.

Well, another post is written. Thanks for stopping by. My heart feels lighter already.


S. J. Qualls said...

Your post title kind of threw me for a minute. I sure hope the medication helps. I almost can't see you getting a few hours alone at this point. My heart goes out to you. The comments about the police made me remember my MIL and the problems my SIL had with her. I realize Mama had Huntington's and that's a different game, but a lot of it sounds the same. If only you could hire someone to just come to the house and sit with you both for a while a couple of times a week, to ease him and them into the situation. I'm panicking for you, Carole.

Valerie said...

I feel so sad and wish there was something I could say that would ease things for you. I know I can't but I can keep on remembering you and Jim in my prayers. God bless you both.

Carole said...

Hi SJ. Please don't panic for me. Really, I will be fine. What I don't write about often enough are the perfectly calm and quiet times we have at home. Boring sometimes, but his anxiety and agitation are so much improved if we are at home, no expectations, very low key etc.

I guess I'm hoping for some peace for his anxious mind, so that he can tolerate others coming to help, to give me some time to myself etc.

Thanks for your thoughtful comment SJ.

Carole said...

Hi Valerie. I can't tell you how much it means to me to know that others, such as yourself, care and are wishing me well. The kindness of others in the blogosphere never ceases to amaze me. Thank you so much.

DJan said...

I too am glad you have finally seen the doctor and what you already knew is confirmed. And that you will start with something for his anxiety, which means to me that the worst of the inability to handle him when he's afraid might be behind you. You have a good doctor! To me the hardest part is being unable to tell Jim what is going on. It makes me sad for him but glad I've gotten to know you both through your blog. Isn't the internet wonderful? :-)

christina neumann said...

Perhaps with the citalopram,he will be less anxious and then slowly allow a caregiver to come in. The new doctor sounds great. I'm not that familiar with dementia, but is there a reason the patient isn't told? I do hope you get some much needed help at least till it becomes necessary to go to the next step. I'm glad I found your blog.

Anonymous said...

Your doctor sounds like someone who knows what she is doing. I like the fact that she doesn't throw a lot of medicine at the problem.

You have lived so close to the situation that it is hard for you to see the bigger picture. Just from your posts, I knew there were serious issues. I'm glad you were finally able to get into a doctor who can start helping you with these issues and showing you what must be done in the future.

Carole said...

Hi DJan. Yes, indeed the internet is wonderful. Such a great way to connect with others.

Jim has no recollection of the appointment yesterday; at least I think that is the case. He has not brought it up, and I certainly won't, given the anxiety that it caused for him.

Dr. S. reminded me that I need to be in control, and just do the best for him, looking out for his best interests. Jim would never be able to comprehend all of what is going on with him. At the most, it would be distressing for him.

So I'm grateful that I can focus on helping to find peace at this point in his life. Thanks for your comment DJan.

Carole said...

Hi Christina. Jim has never been receptive to any conversation about his memory loss or his anxiety and denies there is anything "wrong" with him. The doctor says that the part of his brain that gives a self awareness of deficits is damaged. So this means that it would not serve any good purpose to tell him outright that he has dementia. Worst case scenario, it would be very upsetting to him. Anosognosio is the medical term for this condition found in dementia.

Thanks for your kind words. I'm hopeful and looking forward to recharging my batteries, as he hopefully becomes more receptive to others helping us. I'm glad you found my blog too :-)

Carole said...

Hi dkzody. I am indeed so grateful for Dr. S! She is board certified in Gerontology and Internal Medicine, and has a lot of experience in working with people with dementia. She is so very smart, but in addition, is such a kind person. What a great combination.

Thanks for your comment dkzody.

Katy said...

I am feeling so hurt for you, the first time he didn't recognize you must have been a blow to the heart. Yes, we all know it is coming but experience must be another animal. Thank heavens you found a doctor to help you through this time.

Carole said...

Hi Katy. Yes, the first time he didn't recognize me it was shocking, and so very, very sad. One of the many curses of dementia, it is a cruel disease to the person and to those who love them. I am so very grateful for Dr. S. I'm counting on her to help us through this next stage of Jim's life. Thanks for your comment Katy.

Tehachap said...

Goodness. Good that you were finally able to meet Dr. S and have her examine Jim. Bad that he's actually in the advanced stages of the disease. Good that you obtained the Power of Attorney and Living Will when you did. My uncle passed away recently from Alzheimer's. I debated saying anything about it, but had to share that about 2 years ago, my aunt made an announcement to the family that we was no longer going to allow visitors. She said that they could cope at home as long as my uncle's days were structured without any outside interference. She kept him at home until the very end. I hope you are able to keep Jim at home with the help of caregivers. I think keeping his disruptions to a minimum is a big key to keeping him calm. Blessings to you... I too worry about you and how you're coping.

Arkansas Patti said...

I am so glad this step is behind you and you have what sounds like a good doctor to help. I like that she is staggering the meds. When a bunch are given at once, it is impossible to tell which is helping and which is not. I do hope the new protocol brings you both some ease. Me too on hoping it will allow Jim to be accepting of some outside help. You need it.

Carole said...

Hi Tehachap. I so appreciate your comment. And I know that you, too, are facing some concerns with your husband as well. It is amazing how we manage to rise to the occasion when we need to.

Your comment about your aunt in interesting. I relate to the need to keep everything low key, just to keep the anxiety in check. At the same time, it is difficult and perhaps unfair to isolate yourself and your spouse from family contact at a time when such support may be helpful. It certainly is a balancing act.

I am so grateful I had the foresight to complete all the necessary legal documents before it became a crisis situation.

Take care Tehachap. I think of you often, as I know you are facing some future challenges as well.

Carole said...

Hi Patti. I was pleasantly surprised today when Mike called and asked Jim to go to lunch with him! And Jim agreed! Wow! Some time for me to take care of a few things that are easier to do by myself, and I took myself to lunch too. What a treat to have that free time just for me. I'm so fortunate to have Mike in our lives.

Thanks for your comment Patti. I count you as one of my strongest supporters, and for that I am grateful.

Anonymous said...

My mother took Aricept, but stopped taking it because it led to loose stool and incontinence. I hope it helps Jim.

Carole said...

Hi Gigi. Unfortunately, all medications have side effects, some worse than others. I guess it is balancing out the pros and the cons.

Based on the minimal gains from Aricept, I don't worry about that medication. It is the one for anxiety that I hope he tolerates, and that it helps him find some peace.

Thanks for your comment Gigi.

gideon sockpuppet said...

Carole, I am so glad that you and Jim have finally seen Dr S, and that she is a perceptive and caring doctor. I feel frustrated on your behalf that you have had to wait so very long to receive this necessary medical care.

Given that the dementia is so advanced, having people come into your home to provide respite for you along with extra support in looking after Jim soon may not be enough. For your own wellbeing and Jim's, I encourage you to start looking into facilities for Jim, perhaps a daytime respite centre (adult daycare) to start, and a residential facility to follow.

Sending you caring thoughts,


Carole said...

Hi Jude. Thanks so much for your comment. I am hoping that the anxiety medication will help Jim to become more receptive to having others in the home.

I have thought a lot about the future, and what my options are if I am no longer able to provide for Jim at home. There is a memory care facility being built, with projected opening this fall. It is about 5 miles from our home.

We also have a finished lower level in our house (walkout with private entrance), so theoretically someone could live there, and be of help to me in providing care for Jim.

So much to think about! Thanks for your kind words Jude.

gideon sockpuppet said...

Carole, I am glad that you have options for the future. These are such hard choices to have to make. I cannot begin to understand how difficult it must be.

The reason I have mentioned the future is because I recall with sadness my grandma's situation. She had dementia. My aunt, her main caregiver, was extremely reluctant to put her into a facility, but also was unable to bring grandma into her home to care for her. When my grandma's situation had deteriorated to the point that there was an emergency, the only place that could accept my grandma on short notice was a very dark, depressing, hospital-like residence, as the nicer facilities had long waiting lists. My grandma spent many months in that depressing place. Eventually, her name came to the top of the waiting list, and she was moved into a beautiful, caring assisted living facility with multiple levels of care. My grandma was in the memory-care section, and she spent several years of her life there, living to be 100.

Mage said...

Thank you so much for these posts. I'm reading on....

Carole said...

Hi Mage. Welcome! So glad you found my blog. This is a wonderful community of very kind and supportive folks.