Sunday, October 22, 2017

The Essence of Jim Still Manages to Shine Through the Cloud of Dementia



When I look back a year ago, it is shocking to me how much Jim has declined over this relatively short period of time. A year ago Jim was still driving. We were in a transition period where I knew that before too long, he would no longer be safe to drive.  A year ago I was able to leave the house for a period of time leaving Jim alone. Mechanical tools and equipment were becoming difficult for him to use. 

He had some problems with word finding, but was able to communicate fairly clearly, for the most part. I was just starting to feel the frustration and worry about being caregiver to my elderly mom and still be available for Jim. My brother and his wife have taken over the caregiving responsibilities for my mom, and for that I am forever grateful. She is in good hands. Unfortunately her cancer has returned. At 88 it is not clear what options there are for her. She has an upcoming appointment where she will learn more about the latest diagnostic testing results and recommendations. 

Since my last post I found and attended a support group for caregivers of folks with dementia. It was a little disappointing. There were only 3 in attendance (including the facilitator) and quite a bit of the conversation was off topic between the facilitator and the other person present. At one point the facilitator asked me what I considered my biggest challenge. My practical mind immediately thought of finances, but as I sat there I became overwhelmed with emotion as I said "I miss my husband. I feel like I am losing a bit more of him with every passing day." 

I don't allow myself to dwell too much on the heartbreaking reality of our situation. If I did, I'd be a basket case. But every once in a while, it hits me hard. As far as the support group goes, I'll keep looking. Most groups meet just monthly. The one I attended is every other Thursday, which I feel is just what I need right now. So I'll keep going to this one until I find one that is a better fit for me. 

Dr. S. referred me to a psychologist to help me through this difficult period in my life. At first I wasn't certain I needed this level of support, but now I know that I do. 

Jim is receiving wonderful care at the NH. I couldn't have hand-picked better staff myself. Just as an example, Jim and I were walking down one of the long hallways. Off in the distance I could hear Tiffany's soothing voice, saying such sweet things and obviously giving a lot of TLC to one of the residents. As I walked by the room, it occurred to me that how you behave when no one is looking is really the measure of character. Tiffany was giving her love and her time to this frail, bedridden elderly woman. It was a real "feel good" moment. 

I go every day, sometimes for the morning and sometimes for the afternoon. I look forward to it every day, as I get to see my sweetheart and be reassured that he is safe. I help him shave, brush his teeth and make any clothing changes that are needed. It gives me joy to be able to help him with these things. Staff are grateful as it frees them up to help those with greater physical needs. 

He's always happy to see me; we hug each other tight, kiss, and hold hands just like we always have. We've always been very affectionate with each other, and none of that has changed! I am so grateful for that. He has no sense of where he is; he doesn't ask me where I've been. He may think he is at home; one day he asked me if I just got home from work. I went with it and said yes. 

The food is delicious! They have round dining tables that seat 6 (there's always room for me to squeeze in too). Over lunch the other day one of Jim's table mates, Don, said something to Jim that was totally unintelligible. Jim smiled and chuckled and said something back to Don that also was unintelligible. Then both of them were laughing! They were having a grand old time! 

What I have found fascinating is Jim's response to others who seem confused or in distress. The essence of who Jim is responds in ways that can only be described as therapeutic. I've seen him try to help someone find their room, he consoles those who are distressed by patting their shoulder and telling them that "it will be OK". The recreation therapist told me she saw him counsel someone who was worried that her daughter hadn't been in to see her. That's my sweetheart! 

There have been some challenges, but I knew there would be. He is not always taking his medications. I remember at home the stunts I would have to pull to make sure he was taking his pills. Lots of sweet talk, ice cream, re-approaching, joking around...I had a lot of tricks up my sleeve. Staff are in a learning curve for how best to approach Jim. They have been very receptive to my suggestions. 

The last four nights he has not slept well, getting anywhere from 2 - 4 hours of sleep. Some of this is likely from the missed medications. So hopefully this will correct itself soon, as staff fine tune there approach with Jim.

He's had episodes of agitation, actually hitting staff. Fortunately it was not hard, and no one was hurt. I'm certain that this too is related to the missed medications. 

Physical therapy ended two days ago. This means that Medicare is no longer picking up the bill. So now private pay begins. I've had two productive meetings with Susan, my attorney and her two medicaid expert associates. I now am in a position where I understand legally what my options are and ways to preserve some of our assets. None of it is easy, or without some significant consequences. Tomorrow I meet with Geoff, the best financial advisor ever, who will help me to sort out the options and figure out what makes the most sense "financially and emotionally" (Geoff's words). 

Another wonderful opportunity for me to share what is on my mind and in my heart. Thank you to each one of you for stopping by. The kindness and support I receive from all my kind readers means the world to me, and I am forever grateful.


27 comments:

Anonymous said...

I understand how quickly they deteriorate when you are living in the moment. I felt the same way too but for me it was just a matter of months, from February being pretty independent to August when mom died. It was so fast and there is no predictable way because every single brain is so different. Though looking back years and years I see she was going downhill for at least 8 years but it was so slow and gradual it could be attributed to old age. My younger brother died suddenly and unexpectedly in 2012 and I realize her mental condition just deteriorated swiftly from that. I moved in with her in 2012 and she was always a difficult and mean woman, so it was like being 16 again, not 60-ish. But now I can see the pattern but living day to day, you just can't. I pray you have all the financial resources to keep Jim where he is doing well, those places are rare. My mom's rehab/long term care place was horrible, they were short staffed and I was expecting the same time of care that mom got in an acute care hospital. Couldn't be more wrong. Mom even fell down in the toilet as they forget her in there. Geez Louise, yeah, the horror stories I have of that place. For me it was facing that insurmountable financial predicament. I have no relatives to help me out since my only brother died. I was under great stress but I was in therapy which helped alleviate my burden, but in the end I had to make the decisions and choices. As for violence I was shocked too, my tiny little Japanese mom was hitting the nurses at the hospital. She never ever even swore and now she's hitting them. OMG. I don't know how you do it with a big man, mom at 84 lbs was more than handful for me. However it goes, whatever goes, may the Lord walk with you. God Bless always, -N

Anonymous said...

Glad to know you have someone to help you with the financial piece. That must be stressful for you.

Carole said...

Thanks for sharing your experiences N. It sounds like you had a pretty rough time with your mom. The change in the personality and behavior is such a challenge. Even though we know it is from a damaged brain, it still is difficult not to personalize what is happening.

I'm glad that you found therapy that helped you through this very difficult time. The horror stories you hear about nursing homes are all to common. I feel so fortunate to have had the good fortune to know someone who had connections to this nursing home.

Thanks so much for your comment, for sharing your experiences and for your kind words.

Carole said...

Yes, on a practical level the financial piece is stressful. I would be overwhelmed if I didn't have my trusted advisors to guide me through the quagmire of it all.

Sharon said...

It sounds like they have Jim pretty well sorted out with his medication. He must really like that place, nice that he's getting along with fellow patients. Happy to hear you have financial guides. Since you told me of that 144,000 a year price tag, I am worried. (For you, for my husband.)
Take care now, always good to hear from you.

joared said...

How emotionally difficult coping with your Mothers situation simultaneously with being a caregiver for your husband. Glad you continue to be pleased with the facility where he’s staying and hope they’re able to get his meds consistently taken soon. Am pleased you’re able to avail yourself now of Psych and group supporters — continue caring for yourself.

Carole said...

Hi Sharon. Yes, that price tag is something that only a multimillionaire would be able to afford, given the fact that someone with dementia can live over a decade with this terrible disease.

I am so grateful he is content. If he seemed unhappy, I don't know how I could bear it. The fact that he is so well cared for is so reassuring to me. Never, ever could I have predicted that this is where we would be at this point in our lives.

Thanks for your sweet words Sharon. Always good to hear from you too :-)

Carole said...

Hi Jo Ann. My mom tends to be a worrier. She is essentially homebound, with the exception of someone taking her to the store for groceries or to doctor appointments. I have not yet told her about Jim being in a NH. The next week or two will be difficult for her as she learns her prognosis and whether she has options for the return of her cancer. I just can't add another worry to her plate at this point.

I'm looking forward to getting some help for myself. I like to think that I am a strong, independent woman, but I realize this situation is emotionally challenging beyond my ability to cope effectively.

Thanks for your comment Jo Ann. I always appreciate your insight.

Valerie said...

I had a friend whose husband went into a home for his care and he was like a changed man... happy and relaxed. I wonder if deep inside Jim knows that he is safe where he is and that you are not needing to worry all the time. Whatever, it sounds good - for both of you. God bless!

Carole said...

Hi Valerie. Thanks for sharing this experience. I'll tell you about something interesting that Jim said to me the other day. We were relaxing in one of the quiet areas of the unit. He turned to me and said "You know, we are both going down." I then said "What do you mean by that?" (I normally never question him if I don't understand what he says, as I don't want him to feel stressed that I don't understand him.) He didn't reply, but just looked away. The comment shocked me. Maybe I was reading too much into it, but I'll never really know.

If the real Jim from 10 years ago were able to whisper in my ear, I think he would let me know that I was doing the very best I could in a very difficult situation. This thought keeps me strong. I hang onto this thought to keep me going through the day.

Thanks for stopping by Valerie; I appreciate your support.

DJan said...

I truly hope that Jim will be able to stay in that place, where it seems he is happy as well as helpful to others. He does need to take his meds, though, and I'm glad you and the staff have (hopefully) figured out a way to make that happen. Thank you for the update. I'm always wondering how you are, and how you are coping with this difficult time in both of your lives. Thanks for the update. :-)

Carole said...

Hi DJan. I will be heading over to see Jim this afternoon, following my meeting with Geoff, my financial advisor. I'm hoping to hear that he slept through the night and that he is taking his meds. Im grateful that the director of nursing at this NH is very receptive to listening to family concerns and seeking input to provide better care. Thanks for your comment DJan.

Mary said...

It pains me to see how medical care in this country is not covered except for a short while and while the rich get richer. Why oh why can't we be like Europe?!
I am happy for you that Jim is for the most part happy as well. He is in the best place considering.....

Anonymous said...

A soothing voice can work wonders especially to the frail and sick. I am glad that the nursing home is such a good place for your husband.

Friko said...

My dear lady, you deserve a medal. I suppose we all do, everyone of the carers who go on uncomplainingly, faithfully, day after day. My husband only lasted for less than a year, but I loved him, like you do yours, and the agony of watching once lively, intelligent, loving partners go downhill is all-encompassing.

Good luck, take care of yourself. I am glad to read that you are looking for help for yourself too. You will need it.

Afterwards, when it is all over, you will still need every ounce of strength to survive.

Tehachap said...

I do hope your financial advisors have some good answers for you so that Jim can remain where he's happy. Like others who voice concerns about the country's refusal to provide an affordable answer to long term care for the elderly, we need to implore our gov't representatives to do something. I admire you for your strength and realize that a bit of the real Jim came through when he said you were 'going down'. I think he had a moment of insight there.

Arkansas Patti said...

Perhaps it is helping Jim to be helpful to others instead of being the one needing help. It has to give him a sense of purpose. So glad you still have those caring, affectionate moments together. That must help you through the day.
I do hope you can work out the financial situation so you don't have to concern yourself with that also. Good that you have trusted help in Geoff.

Carole said...

Hi Mary. I just got home from visiting Jim. He is having trouble sleeping at night; last night only had one hour of sleep. The director of nursing is on top of this, and hopefully this will be turned around soon.

Even though he was tired today, he was content. It gives me great peace of mind to know that the staff like him, are good to him, and that Jim is contented for the most part.

Thanks for your comment Mary.

Carole said...

Oh Friko, I think about you often, knowing the sorrow you have faced, and the challenges you have of trying to maintain strength now that your beloved is gone.

I find myself thinking a lot about happier times in our marriage, prior to Jim's decline. It's comforting, but also bitter sweet.

Thanks for your kind words Friko.

Carole said...

Hi Carol. Had a good meeting with my financial advisor this morning. It was very helpful. I needed to be able to process all the information I received from the attorneys. Our conversation accomplished just that.

I love it when I see the real Jim peek through the dementia. He's still there, and it gives me much happiness. I know that someday that won't be the case, but I'm hanging on to these moments and will forever cherish them.

Thanks for your comment Carol.

Carole said...

Hi Patti. What great insight! I never thought about it that way, but I believe you are right. I saw it again this afternoon as he was patting the shoulder and reassuring a woman who was trying to figure out where she was supposed to be. It is so sweet to witness! A sense of purpose; we all need that!

Thanks for your comment Patti.

troutbirder said...

I'm feeling luckier these days for me and my spouse as her decline continues to be a slow process. This give us both time as we adjust to the new "normal" The long term financial implications scare me the most for now. I'll need to find the kind of guidance necessary....

Carole said...

Hi Ray. Everyone's situation is so different when we walk this journey of dementia. You are quite wise to recognize that legal guidance could save you and your wife a fortune in money. Some elder law attorneys offer a free initial consultation,to hear your story, get the basic facts of your situation, and then offer preliminary guidance on the best options for your particular situation.

Things such as Power of Attorney, a will, can be done ahead of time without the stress of a last minute scramble to get your affairs in order.

I'm so glad I sought out the help when I did. Well meaning friends may offer advice, but the legal intricacies can be best interpreted by an expert, and with the knowledge of your personal situation.

I'm still in shock sometimes as I think about how Jim's decline was so rapid. I'm glad that your wife's decline is a slow decline. It gives you a chance to still enjoy what life has to offer. And, it gives you time to get your legal affairs in order.

Thanks for your comment Ray.

Dr Sock said...

Carole, during the last five years of his life, my dad struggled with multiple cancers. Like with Jim, his own difficult circumstances brought to the foreground his compassionate nature and desire to help others. He spent several weeks living in a cancer residence in the city as he received treatment. Apparently, he took up playing the piano and singing old time songs to cheer up the other residents. (He had never studied piano, but was very musical and played by ear.) Then he continued an email correspondence with the people he had met, encouraging them and responding to them as they became more and more ill. I always marvelled that rather than dwelling on his own failing health, he used his remaining time to help others.

We are fortunate in our lives to know and love good people like my dad and your Jim. A long and difficult final illness becomes all encompassing for that period of time, yet it is only a small component of the whole life we share with them.

You are in my thoughts.

Jude

Carole said...

Oh Jude, what a beautiful story! Thank you so much for sharing with me. It's an important part of the healing process for the survivors of those with a fatal disease to be able to recognize and cherish the essence of who this person really is. Underneath the ravaged body is the beautiful soul of the person we love.

Mage said...

You have opened a door for many of us who care. Our friend Duck faded slowly, but he always remembered us. We threw him a 85th birthday party and invited a few of his long time best friends. After wards he asked us who they were.

Carole said...

Hi Mage. Thanks so much for stopping by. I appreciate your comment. It's interesting how many of us are touched by dementia, either a family member, friend, or even an aquaintance that we occasionally see. I'm so sorry to hear about your friend Duck. It sounds like he had some wonderful caring people in his life.

I'm often reminded that someone with dementia may not remember our name, or even who we are, but they will remember how you made them feel.