Saturday, October 14, 2017

It's Been a While and a Lot Has Happened...

The day following my last post, Jim had an episode where he was severely agitated. Fortunately I had my phone and key fob in my pocket. He didn't know who I was, but was very angry at me, ordering me out of the house. So that is just what I did. I drove around for about 5 minutes, hoping that by leaving and then returning it would break the cycle. As I came driving down our driveway he opened the front door and shook his fist at me, yelling for me to "Get out of here!"

Heeding the advice of Jim's gerontologist, Dr. S., I  pulled out of the driveway and parked down the street where he could not see me and called 911. Obviously it was not safe for Jim to be home alone, and it was not safe for me to try to enter our home.

I was very careful to convey to the dispatcher that Jim had advanced dementia. He assured me he would pass this along to the responding officer. I was advised to wait in my car with the doors locked, out of sight, until the police arrived. And that is exactly what I did.

The police officer that arrived was wonderful. He spoke with me first to get a little background information. I made certain he was aware of the recommendation of Dr. S. that he be taken to the ER and then admitted for stabilization and medication adjustment. We then both walked down the driveway; Jim met us at the door. It was interesting to see the officer's reaction. I could tell he was shocked by how relatively young Jim looked, given his very advanced dementia.

Jim was still agitated towards me, but respectful of the police officer. At one point the officer indicated to me to back away; so I did. Somehow he managed to get Jim to agree to go to the hospital. I remained in the background, not wanting to interfere with how well the officer was managing the situation.

Fortunately I had my packet of emergency medical information ready to go. I was able to give a copy to the ambulance crew and then the ER doctor and nurse. Everyone that evaluated Jim in the ER was very curious about "our story". I"m certain it is because Jim looks so normal and looks too young to have such advanced dementia.

Jim was admitted and was in the hospital for about a week. While there he was more confused than ever. The doctor asked him his name and he said he couldn't remember 😢 That hit me really hard. I know that hospitalizations and illnesses will increase confusion when someone is vulnerable like Jim. But it still just broke my heart. I cannot imagine how he must have felt. He had no idea where he was, or even who he was.

He was very glad to see me and seemed to know who I was when I would visit him in the hospital. He had  an aide in the room at all times. At one point he went for about 48 hours with NO sleep. Finally they added a sleep aid and he started to sleep at least a few hours every night.

While he was in the hospital I would visit 3 times a day, staying about a couple of hours each time. It was a difficult week as I struggled to figure out what I was going to do. I was exhausted and worried sick about Jim. What was I going to do?

The doctor at the hospital (who also happens to be a gerontologist) told me that there really were no further adjustments that they could make for Jim's medications. There might be a little tweaking, but nothing that would address the severe agitation that Jim was experiencing.

In a very kind way, he told me he was concerned about my well-being and that it was not safe for Jim to be at home. He shared with me a few stories of caregivers who had been hurt by a spouse with dementia. I listened carefully to what he had to say.

Dr. S. called me after she had spoken to the doctor at the hospital and essentially told me the same thing. She agreed that maybe there might be some little changes that could be made in his medications, but that his case was so challenging, she did not believe it was safe for him to live at home with me.

Toward the end of the week the hospital social worker told me that he met the criteria for needing some physical therapy, given his increased weakness and his problems with balance. She suggested nursing home rehabilitation and pointed out that this would buy me some time while I figured out what I was going to do.

Medicare picks up 100% of the bill for nursing home placement for up to 21 days. But only if there is a skilled nursing need (such as PT) and only for as long as the person shows progress. Once the person plateaus, the funding ends. At that point it becomes private pay for $144,000/year.

It's a long story, but I almost got tricked into accepting placement at one of the worst nursing homes in the area. Thanks to knowing someone with the right connections, Jim was accepted at a nursing home for short term rehabilitation. This particular nursing home is considered one of the very best in the area.

So, that is where he is, at a nursing home for rehab. He is getting PT. Once he plateaus and medicare payment stops, I'll need to have a plan B. I'm working on that....

Now for the part that is almost unbelievable. Jim is happy and content. He has no idea where he is. He is always happy to see me when I come to see him. He never asks "where were you?". He never asks to go home. He loves it.

The unit is locked, and everyone on the unit has dementia. The shape is rectangular, so that people who like to walk can just keep walking and remain safe. There is a very large courtyard in the center that folks can enjoy when the weather is good.

They have activities available from 9:00 AM to 9:00 PM, for those who are interested. Everything from ice cream social, movies, sing-a-longs, basketball (modified/from a chair), current events (only happy ones!), coffee hour, and of course don't forget happy hour with non-alcoholic beer and wine, cheese and crackers.

The staff love Jim. He is without a doubt the youngest person there and one of the more mobile ones. The staff are amazingly good with folks. Kindness and gentleness prevail. As I look at how active Jim is and how much he loves it, I realize that I could never provide for him like that at home.

So, what do I do.......I'm in the process of figuring that out. What's best for Jim is top priority, but the financial piece has to work too. I've met with our attorney (the one who did our power-of-attorney, health care proxy and wills), and I have another appointment with her later this coming week to talk more about what options I might be able to pursue legally, taking into account the financial implications.

I thought I would share with you something personal. A few weeks ago I realized that I was feeling very overwhelmed and very, very sad. I found that I was crying a lot. Usually first thing in the morning and late in the evening. Somehow I would manage to pull myself together for the day to make sure I was there for Jim.

I was smart enough to realize that things were going to get worse, not better, and that I should get some help for myself. Every time I have seen Dr. S. (she is my doctor too), she always asks me if I am doing OK, and she reminds me that depression is very common among caregivers. I always reassured her that I was fine, but that I would let her know if I needed some help. Well, the time had come.

So, I made an appointment for myself. Dr. S. was wonderful! She told me that she could tell I was under a tremendous amount of stress. My blood pressure has always run very low my whole life. The top number usually is barely 100, and the bottom number in the 70's. At this office visit my BP was 130/88 and heart rate was 98! I guess my body was trying to tell me something.

She started me on an SSRI. It usually takes a little time before you notice an improvement. I am very pleased to tell you that I feel so much better! I know that Jim and I are in a difficult situation with no easy answers, but somehow I now feel much better equipped psychologically to handle what ever comes our way.

I remember telling Dr. S. that I wasn't anxious, just sad. Boy, was I fooling myself! The difference is just incredible. I saw a very good friend of mine yesterday. Amy and I have been friends for many years. Her life is incredibly busy for a lot of reasons, including that she is younger than me and still works full time. So we have not seen each other in a long time. But we email, text and talk on the phone to keep in touch. It became especially hard to see each other when Jim's condition worsened and I needed to be here to provide around the clock care.

When I saw Amy yesterday she couldn't believe that I didn't look more stressed! And she is right. I really do have a sense of calm, knowing that I can control only so much; I have to let the rest go knowing that I will deal with it the very best I can.

So dear readers, thanks for reading this very long post. There is a part 2, which I will post later in the week. I include all of you when I think about all the wonderful support I have on this journey with dementia. And for that I am so very grateful.

39 comments:

Sharon said...

I've been wondering how things were going for you. Terribly sorry Jim's dementia is progressing so rapidly. I'm so glad that you were prepared with medical paperwork when it all went south. Do you have any idea who he thinks you are when he doesn't know it's you? Are you getting some rest now, or worrying how to manage finances? I'm afraid our savings would go down the drain and we would lose everything. It all costs so much now. We thought what we were putting back would be enough, that plus his retirement. Now - I don't think so. $144,00 a year? That's nuts!
You take care now!

Anonymous said...

I understand your dilemma as mom was in the rehab hospital I met someone whom Kaiser recommended and that person said to spend down all the cash mom had, which I did in preparation for home treatment. Their service alone to do all the Medicaid paperwork was $5K. In the end it came down to $$$, dementia is not only about the mental and physical agony for the caregiver(s) but also financial.

I say this as a double edged sword - 'luckily' mom passed before anything more had to be done. She went downhill so fast (two weeks after rehab) that I was caught off guard. I was however determined to take care of mom by myself (with my own physical issues) until we met the Medicaid threshold.

So speaking as someone who had to face what you are in terms of long term care it is a long, difficult and as personal to the person as dementia is.

Eventually there will be no more 'what about' 'what ifs' 'why can't' just none. I was told by mom's home care nurse though that some families which have a lot of family members living in a home, they do everything for their bedridden parent and have been doing so for years and years. More common are the stories too that siblings all bail out except for that one who ends up being the caregiver.

I am sorry and God walk with you on this path.N

Carole said...

Hi Sharon. Yes, I am sleeping very well at night. I feel rested. The relief from the stress of 24/7 caregiving has given me some time for restoration.

I haven't yet figured out exactly what I am going to do, but I have two very smart women (elder law attorneys) who are helping me figure out what my options are.

When Jim doesn't recognize me, I don't know who he thinks I am. The other day his brother Bill was visiting and Jim whispered in my ear "Look, Steve Bowman is here." He still hallucinates a lot and I don't expect that to change. I'm just so grateful for his contentment. I would break my heart if he was unhappy.

Carole said...

Hi N. Thanks so much for sharing all of this with me. I appreciate so much hearing from others who have walked this journey. It makes me feel less alone.

I've educated myself on the medicaid rules, spend-down etc. So now it is just looking at all options that are out there and figuring out which is the best for Jim and for me.

This morning as I was laying in bed it occurred to me that if I had to, I could go back to work. I'm not saying that is what I want to do (I don't!) but it is one more option on the table to help me finance Jim's health care.

When I met with my financial advisor last month, he helped me with a budget for home care. But at the time, neither one of us thought that I would need 24/7 help with Jim. He no longer accepts my help to use the bathroom or to shower, so if I brought him home I would need someone all the time to help with personal care, as well as to have help available for safety issues, when Jim becomes aggressive. At the going rate of $25 - $25/hour, not much difference between this home care cost and the cost of nursing home.

I'm trying hard to take one day at a time. The calmer I remain, the clearer my thinking will be.

Thanks so much for sharing with me N. I appreciate your kind words.

Mary said...

Jim is lucky to have you in so many ways. I am a widow with no children and although I do have friends, there is no one I would trust completely to handle my money if I were to get Alzheimers. I don't have a clue how I should even deal with that possibility ahead of time.
It also bothers me that we are a rich powerful nation and yet people can lose everything with end of life medical care and in many countries in Europe, this is not so. They are covered completely.
I'm glad you are feeling relief and I believe Jim is the happiest he is going to be now. You did the right thing for both of you. I so admire your strength and dedication and I know it comes from love.

Carole said...

Hi Mary. I so agree with you, that our country is ill-equipped when it comes to end of life care, especially for dementia which can stretch out to over a decade.

For those of us with no children, it becomes very challenging to plan for such things. I believe there are attorneys that will manage an estate for end of life care. This would keep everything legal and safe, but then you are counting on someone who doesn't know you to do the best for you at a time of great vulnerability.

Thanks so much for your kind words Mary. I am blessed to have such wonder support in my blogosphere world.

Valerie said...

I lived every minute with you as I read this post and felt like crying too. You did the right thing but the future will have its ups and downs - just know that your many friends will be praying for you and Jim and the good Lord will guide you on the right path.

Carole said...

Hi Valerie. Thanks so much for your sweet words. I know that you are facing some health challenges of your own right now, and I'm sending hugs and best wishes your way. I'm so fortunate to have this wonderful support network, both in-person and in the blogosphere. How fortunate I am to know so many caring people!

Roberta Warshaw said...

The long term care piece will be so hard. I cannot imagine as I know how expensive it is. I hope you can both get what you so desperately need.

Hope Springs said...

Carole...I have read your blog for a while but haven't commented until now. We've had a couple dementia cases in our family circle lately with one more just diagnosed. It's really tough. And I watched a very close friend go through this with her husband. She took care of him while working full time out of her home (with travel, too) until she literally broke her foot and need surgery and a wheelchair to recover and had to find him a place to stay when she couldn't care for him. So I'm very happy to hear you're getting help. Once her husband got into a facility, she realized how advanced his dementia was and had to find him a permanent place where he was safe (and she was too...he was threatening her at home when he got angry).

Finances were a tough part of the equation for her, too. She worked in health care for many years and had purchased both of them long term care insurance. But when push came to shove, they didn't want to pay for the local veterans' facility (her best choice) saying it was excluded from her policy for some reason. She fought them for quite a while, paid for it herself in the interim, and finally got compensated. He lived there until he passed away and was as happy as he could be.

This is all to say hang in there. It's SO hard. It's five years since he passed now and she still talks about how taking care of herself and seeing friends, etc., got her through it. But it took a real toll at the time. I'm so glad you realized how it was affecting your health and got help. She is doing much better now and actually took a job she loves. Not suggesting you go back to work, but she was offered a job she really wanted to do.
Blessings!
--Hope

Carole said...

Hi Roberta. It is absolutely overwhelming! The finance piece is very tricky. Once I know the options available to me from the elder law attorneys, I plan to then consult with our financial advisor to get his perspective. The lawyers will know the legal options available for preservation of assets. But I also want to get Geoff's advice regarding which option would provide the best financial security for the future.

Karen said...

Hi Carole,

I am happy for you that Jim is settling in well. Do you wish that you had started on antidepressants sooner? I am starting down this path, probably where you were two years ago. I think that I do have situational depression but it is still very manageable. I just feel very sad at the path life is taking us down. My doctor offered me an rx but I keep thinking that it is too early and when things get really bad I will take them. Just wondered what you think.

Carole said...

Hi Hope. So nice to hear from you. Thanks for sharing the experiences you have had with family and friends. You've seen up close and personal how devastating this cruel disease can be to all involved.

The Long Term Care insurance is a tough one. We opted not to buy it. I had heard the same stories from folks about having to fight to what was rightfully theirs, at a time when they barely had strength to get through the day.

One case in particular, the spouse found out that the LTC insurance only covered up to $36,000 a year! It's complicated. I'm sure there are some good experiences out there with LTC insurance, but to us it was such an unknown with very expensive premiums, we opted out.

Thanks for the encouragement. I'm trying to make sure I stay healthy too. The relief that this past week has brought has been just amazing. I really didn't fully appreciate the toll it was taking on me.

Carole said...

Hi Karen. Thanks for stopping by. What I would say is that I probably should have started the medication a little sooner. While in the thick of things, I kept thinking that what I was experiencing was normal, given the circumstances. And, I didn't think of myself as depressed, just very sad. I'm not sure how to articulate the difference (if there is one), but in retrospect I probably should have started a bit sooner.

It takes a few weeks for the full effect, so that has to weigh into your decision too. When I saw Dr. S. about all of this, she shared with me that when her mother was dying she started taking an SSRI to help her through it. She said she is so glad that she did, as things just worsened of course, and the medication helped her through the rough patch. She said she eventually weaned herself off, but made certain that the worst of it was over after her mom died.

One thought, if you wait until things are "really bad", remember that it will take a while to get the full benefit.

Sending you hugs and strength for where your journey will take you. Stay in touch and let me know how things are going for you.

Anonymous said...

I'm so glad you were able to get the help for you and Jim. You will do much better when you feel better. Hopefully, this will work out for you and you will find the right solution. You certainly sound like you know what you are doing.

Carole said...

Hi dkzody. Thanks for your comment. I don't always feel like I know what I am doing, but I do know that I am trying to do the best I can for both of us. Seeking out the advice of folks who know more than I do is probably one of the smartest things I can do. That, and taking care of myself. Knowing that Jim is happy and content makes it easier for me to take care of myself too.

Julie said...

I am very, very sorry for what you are going through. I'm sure your lawyer will advise you on this, but I would definitely look into immediate annuities as an option for protecting assets. Thank you for writing a very informative blog; from the perspective of someone with who fears getting Alzheimer's myself (it runs in my family), it is very interesting to learn that Jim is happy and content in his new living situation. I hope he continues to do well; I'm sure it makes you feel better also.

Arkansas Patti said...

I know you are facing a tough time right now but I am so relieved that Jim is finding some peace and you are getting some relief. What an incredible journey you have both been on. I have really been concerned for your safety and am glad that is no longer a worry. However, the cost of LTC is ridiculous. Hoping you will be able to find a workable solution for you both.

Carole said...

Hi Julie. I was shocked to discover how happy and content he is. I would never in a million years have guessed that he would adjust so well. Even his brother and his best friend who visit Jim occasionally cannot believe how well he is doing.

I always assumed that home care would be the superior option for Jim's well-being. Boy, was I wrong! It's a reminder to never sit in judgement of choices people make for their loved ones.

Sweet story: Jim has taken to "counseling" and helping other residents. I've seen it myself and staff report it to me as well. If someone seems unhappy or in distress, he tries to offer them some help and/or counsel.

I have read a little about the annuities option; I always appreciate hearing from my readers. I learn so much! Thanks for your comment Julie.

Carole said...

Hi Patti. In the "It's a small world category", I discovered that the guy (Gus) whose room is right next to Jim's is someone we both worked with many years ago. Gus's wife Sandy worked at the same agency too. So imagine my surprise to discover this! I've had some wonderful conversations with Sandy. She has been a wonderful support to me. She has been very content with the care that Gus receives.

One of the things that Sandy said to me is that while the financial piece cannot be ignored, it is hard to put a price tag on peace of mind for the caregiver and contentment for the spouse. After this past week, I know it exactly what she is talking about.

The safety issue was always in the forefront of my thinking. And once Jim started wandering, I feared a vicious cycle of crisis, call 911, police, ER, hospital admission for stabilization. Rinse and repeat. I just can't imagine how long either of us would have survived that kind of emotional trauma.

Thanks for your comment Patti. I so appreciate your support.

Hope Springs said...

I completely agree, Carole. We haven't purchased either based on the expense vs the stories we've heard. I think my friend just bought it because it was offered in her job at a reasonable price because of the healthcare environment. The stories of those trying to collect, the long term companies that have gone broke, etc, stopped us. I'm sure no one has the energy to fight that when going through something like you are. Hugs!
--Hope

Tehachap said...

Reading your post and all of the comments is very reassuring to me. I did worry about your safety. You were blessed that the interaction with the police turned out as well as it did--I've read lots of stories where that was not the case. Thank you for writing -- your posts (and the comments) are very helpful in educating your readers about LTC and how to achieve the right care for your loved one. I can't understand why our country can't get something in place for long term care. Other countries do it -- why aren't we following suit?

joared said...

I’m glad all has gone so smoothly with Jim, but sorry to hear his condition has reached this point. So good you’re taking care of yourself. I know from experience plateaus in treatment can come very quickly, especially with patients that have memory problems. — sooner than family might anticipate sometimes, or be ready for, so be prepared. Pursue P.T., or Case Mgr. re how they view Jim’s progress — not necessarily waiting for Care Plan Meeting. Hope you’re able to work out satisfactory placement for him.

FWIW the facility you describe reminds me of a similar one in layout where I was asked to see a patient for a swallowing assessment. Results were I didn’t need to recommend therapy. The patients seem to mingle in the hallway at times, especially close around mealtimes — then gradually move en masse through the hallway circling back to where they started. A few of those with living spouses no longer recognized their actual spouse who visited. But the patients seemed to sense on some level they had a spouse and might connect with another of the opposite sex who was in their same mental state. They basically became a social couple together — a reality to which the actual spouses would decide to adjust to when they visited — sometimes to be accepted as a known person, though not as spouse, or others might not be seen as a familiar person at all. This doesn’t necessarily happen with everyone, but expect you’re as prepared as anyone can ever be to the unpredictable aspect of how Jim’ relating to you can vary. You continue to be in my thoughts as I send good health wishes to you.

Carole said...

Hi Carol. I so agree with you. Here we are, a very rich and powerful nation, yet we don't have good solutions for the care of our vulnerable elders. As you point out, other countries have pulled this off, why can't we?

I know I have said this before, but writing about our experiences has been so very therapeutic for me. Many times I am able to process information in a better and different way when I write about it, as opposed to just ruminating about it. So grateful that I started this blog; look at all the wonderful friends and support that have come my way!

Thanks for your comment Carol. Hope you hubby is doing OK.

Carole said...

Hi Jo Ann. Given your background, you will appreciate this story. At the very first meeting with the nursing director and case manager, I was told that Jim would likely need no more than one week of therapy. Later that day, I saw the PT and she and I discussed Jim's issues with balance and strength. She said to me "I think we can get about 2 weeks of therapy for him." Yay! That extra week buys me (literally!) an extra week to figure things out. I'm assuming the PT's evaluation would take precedence over the case manager's point of view.

I remember the story about Supreme Court Justice Sandra Day O'Conner's husband who had dementia. He was in a facility and struck up a romance with another woman who also had dementia. How sweet! I can't think of anything more reassuring than knowing that your spouse is well cared for, loved, and content.

Thanks for pointing out how these kinds of relationships can blossom for the person with dementia. This cruel disease has robbed Jim and I of so much, but it will never rob me of my love for him. Our relationship has changed over the course of the disease. But I will always hang on to the deep love and respect I have for him. I hate the dementia, but I still love the essence of who my sweetheart really is.

Thanks for your comment Jo Ann. As a professional in the field, you've had a lot of experience with folks with special needs. Thanks for sharing your unique perspective.

jalna said...

Hi Carole. Thank you so much for keeping us updated. I appreciate your willingness to bring us into your life. Your first-person perspective is so valuable to me. I felt relieved after reading this post as I was beginning to worry for your well being. I continue to keep you in my thoughts and prayers and wish you the best in this challenging journey of yours.

Carole said...

Hi Jalna. I'm still adjusting to being home without Jim here. It is a relief in many ways, but sad too. I miss the real Jim terribly. I see him every day, usually going to the nursing home for the morning or for the afternoon. He's always happy to see me. Such a relief that he is content!

Thanks for your comment Jalna, and for your thoughts and prayers. So appreciated!

Linda said...

Carol, I found your blog this summer and read through all your old posts. You have been in my prayers daily. I was especially concerned for your safety after your previous posts and am so thankful that now both you and Jim are in safe places. Dementia runs in my family (father, 2 uncles, and now brother with early onset) and I so admire how thoughtfully you are traveling this journey. Your sharing through this blog can be a guide and encouragement for others. I also hired an eldercare lawyer to help me navigate the Medicaid paper work for my father and mother. There is so much paperwork needed to prepare those files. I cannot imagine anyone doing it alone. You remain in my prayers each day.

Carole said...

Hi Linda. Thanks for stopping by. If my blog helps/encourages others, it would mean the world to me. It's such a difficult journey. Most people have heard of dementia, but many have no personal experience with it.

And that journey is different for everyone. My dad had Lewy Body dementia and his symptoms were quite different than Jim's. He did not have the aggression or agitation.

Yes, the paperwork needed for medicaid application is overwhelming. With accounts being electronic, I've never felt the need to print out statements from investments and bank accounts. And 5 years worth is a lot of paper!

Thanks for your kind words and your prayers Linda. I always appreciate hearing from others who have shared in the journey with dementia. I'm so sorry to hear about your brother with the early onset. Dementia is so cruel!

Anonymous said...

It's a good idea to have Jim in a long term nursing facility. Good luck finding one. Aloha from Hawaii.

joared said...

Rehab team members do often become patient advocates in special ways, but numerous factors contribute to how long a patient is covered by Part A, so always wise to plan for its ceasing sooner rather than later — even though a few days notice is required. Glad they’re working with you, too, as arrangements for future placement, even if at home but with increased special help, cannot often be quickly and easily made by most people

I don’t recall hearing Justice O’Connor’s story, but good to know loved ones are learning in advance more of the specific challenges that can be encountered — so much to adjust to — that those who’ve lived the experience, like you, too, so generously share.

Carole said...

Aloha Gigi! Thanks for your well wishes. I want the best for Jim, and at the same time keep both of us safe from harm. Still trying to sort everything out, but it will get clearer I am sure as time passes.

Carole said...

Received word a couple days ago that his therapy was ending. He did manage to get 2 weeks under Medicare, so for that I am grateful. I'm still not certain exactly what the future holds for Jim, or for me. But he is safe and content where he is. I'm working with my trusted attorney and my financial advisor to figure out what our best options are. But for now, it is status quo. I'm just so grateful that he is content. If he was unhappy, I don't think I could bear it.

PT did a fantastic job on his last day of therapy. They showed me exercises I can do with him to help keep the strength in his legs. He's pretty slow with his walking, but he seems to enjoy it.

tahoegirl.blog said...

Your journey sounds difficult and yet you are a positive and strong person. I can't imagine the heart ache you must have with Jim. but he does sound like he's happy where he is and that is worth it. Best to you and keep us posted.

Carole said...

Hi Christina. Yesterday I went to a support group meeting for the first time. One of the questions I was asked was "What is the biggest challenge you are facing right now?" My first thought was financial, but as the question sinked in, I started to become quite emotional and realized that it is the lost of my dear, sweet husband. You are right, the heartache is unbearable at times. But at the same time I know I must remain strong for Jim.

Thanks for your comment Christina.

Tehachap said...

Checking in to see if you've been able to post an update on how you and Jim are doing. Christina's comment is so very true... I imagine you are experiencing a myriad of feelings these days -- happiness that Jim is well cared for and content, but sadness that he's no longer home with you. Having been married for as long as you two have, being apart is profoundly difficult. Know that you and Jim continue to be in my thoughts and prayers.

Carole said...

Hi Carol. I hope to get a post up this evening. Jim has had a few challenges the last few days with not taking his medications and getting very little sleep at night. I'm consulting with the staff on ways to disguise his pills. Without his medication he will surely have more problems with not being able to sleep and agitation.

My days are focused on Jim. Even though he is fairly content and I know he is safe, my life and my thoughts are constantly revolving around Jim. I'm sure that many folks go through this, whether their loss of their spouse is a sudden death, or whether it is a gradual loss over a long period of time.

Thanks for thinking of me Carol; I appreciate your kind words.

Dr Sock said...

Carole, you have been going through such a difficult time. It must have been both terrifying and heartbreaking to be chased out of your home by Jim in the grip of this terrible disease, and to make the call to 911. I can’t imagine how it would feel to be in that situation, and my heart goes out to you.

At the same time, I am thrilled to hear that Jim is in the best nursing home in the area, and that he loves it. What a relief to find out that he is happy to be in care away from home. Even so, the worry about his agitation and sleep difficulties, along with hours spent visiting, and trying to figure out your way forward is clearly continuing to take a toll on you.

Take care of yourself, dear Carole. I hope you can work out a good financial solution to keep Jim in care, while not jeopardizing your own future. I am also so glad that you have reached out to seek help, and that the SSRI seems to be taking effect.

During a few very difficult periods in my own life, I have found that I have been able to dig deep and find the internal strength to cope during the most difficult periods. Then afterwards, when the pressure eased off a little, I discovered the extent of my exhaustion, depression, and burnout. I admire your loving care for Jim, and encourage you to take some time to care for yourself in the same loving way.

Thinking of you,

Jude

Carole said...

Oh, Jude, I don't even know what to say. Thank you so much for your kindness and caring. It really means a lot to me. The support I receive from you, and so many others who read and comment on my blog has been a healing touch for me, and for that I am so grateful.

I actually have a call in to a psychologist for some counseling. I'm feeling pretty vulnerable right now. I agree with you that I have to take care of myself, so that I can be at my very best for Jim.

Thanks for sharing your experiences with me Jude. It makes me feel less alone and gives me encouragement for making sure that I am doing everything I can to make sure Jim is ok, and that I am ok too.

I'm actually working on an update post this afternoon. I hope to post it soon. I'm so grateful for the opportunity to write. It's part of my therapy!