Hi all,

As you may possibly recall, my husband was diagnosed with frontotemporal dementia this past spring, but has been on a downward spiral for a good five years. Roger is 59 and I just turned 55, so I feel that we're very young to be dealing with the challenges of this disorder.

I was forced to quit my job as a childcare provider a year ago to meet Roger's needs, and I must admit that I was happy to end my career as a childcare provider at that time. I had been wanting to move on to a job less challenging, but delayed that decision because I could see that things weren't right with Roger.

So now, a year+ later, I feel that there must be more to life than caregiving 24/7. This morning our day got off on a negative foot as I discovered that he had removed the cap from his catheter bag, so there was urine all over the carpet. What a way to start the day. Yes, I know that many of you are dealing with this same thing, so I'm fully aware that I'm not alone in this. I'm just tired of it today!

I guess my question is: when do you know that it's time to place your LO in a care facility? Roger is more than able to walk and feed himself, but that's about where his abilities end. I do absolutely all of the work in our home, plus I basically live his life for him. With FTD there is huge restlessness, so he's always wanting to be on the go, and it's wearing me right out. Even with volunteer walkers, he still has energy for more walking.

Another issue is the incontinence....yes, the big one. I'm not sure that I signed up for that type of detail when I signed our marriage license over 30 years ago.

I want your opinions. Maybe you think I'm a snivel, but I'm tired of being in prison and fear this could go on for many more years.

Chris

Good evening all:

Chris you have made the Transition. I am glad to hear that your Children were okay. We all know how we feel but it is so Difficult for the Children[ Adult Children.

Yes it takes awhile to the stillness in the Home when our Lo,s are in a NH. I find sometimes the Quite is loud. Someone said our Thoughts are our Conversation. I know I speak so seldom in the House now when I do over the Phone or elsewhere my voice is Raspy. I need water with me.

I visited Jim today but did not take him for a walk. I know it will be difficult when it gets colder , he sure doesn,t like the cold wind off Lake Ontario whicj is 5 blocks from the NH.

Chris being younger makes it more difficult.We have lived most of our life. I do hope you will be okay and your visits will be good.
It sounds like Rogers settled in okay.

Take care my friend

Eleanor

Chris, thank you for sharing the transition you are making.To wake up and be able to smell the coffee is alot when you have not had the time for so long.It is difficult to put your self in a different roll after so long.Just to be able to have time , even to not do anything would be a welcome change.Make the most of each day and do the things you wanted to do when you were unable.The mind has away of playing tricks on us.When we get the free time, we forget all those things.Please, keep us informed and be kind to your self.

Good morning,

It's been a few days since I've written, so thought this would be a good time to update you on the happenings here.

On October 12, Tuesday of last week, I placed Roger in the nursing home in St. Cloud, which is a strong hour and a half away from our home. The day went smoothly and it was not nearly as difficult for me as I had anticipated. Since then I've had a few low ebbs, but know I've done the right thing for both Roger and me.

Our two kids came home on Friday night and then we went together to see Roger on Saturday, and that went well also. I feared it would be really tough on the kids, but they were able to see first hand that it was the right decision for their dad and for me. Even though it was dreadfully cold and windy that day, we still were able to take Roger outside and did some walking. I'm still working on the volunteer walking thing and am hoping something can be put into place soon.

I'm going to St. Cloud again today to see Roger and am looking forward to that. The weather is much nicer today, so it will be a far better day for walking than it was last weekend.

All in all, I'm doing well and am adjusting to my singular life. I'm not sure where this singular life will take me, but I think I've made significant progress in learning to live my life one day at a time without looking too far into the future.

Thank you for your support and words of wisdom when I needed it most. You are all great people willing to share your warmth and wisdom freely.

Love, Chris

The one thing you will need to know is once you become a caregiver, your life is not your own.All the freedom of choices are no longer as they were.Sadly , many family members choose not to help so things do not become so overwhelming.To be able to have time away from the situation makes so much difference.We are but a small fraction of people dealing with this.It is a very sad situation for all concerned.We want a life but we also want our loved ones to feel loved and not abandoned.So many need the help of others and they go un noticed.How helpless they must feel.To not have someone to turn to for the smallest thing.The socail worker told me there are so many that need help with caregiving.So many are stories where the caregiver is stricken with a serious illness and the patient has to be placed.She shared this when I told her, if I ever won the lottery I would find away to distribute fund to those who need help, no matter what it was.The only thing is I would over sea the money and not put it into the hands of an agency that I was not familiar.I would trust this agency I have as they are careing people.

Chris, the one thing you never want to do is conem any decision you make or allow others to do so.Each has a limit to what they are able to do.You are to be congratulated for knowing when the time is right for you both.I feel so bad for your sons.It is such a hard time for them.He was there while they were growing up and help mold them into the fine boys they are.This is the time they would be bonding as friends as well as parents.They will need you to acknowledge their emotions and open the doors of communication with them so they can share what they are feeling.Please, do not concern your self wih what others think.You have to be able to change the way you have been doing things for 5 years.i AM SO SORRY FOR THE FAMILY.oNE IMPORTANT MEMBER IS NO LONGER WAITING WHEN THE BOYS COME HOME.

Aw... Hugs to you, Chris. It sounds like it's going to be rough for your kids for a while, but you made a good decision for all concerned, it sounds like. You are not heartless, by any stretch of the imagination. Often, I wonder if keeping Mike at home is really the best thing for him, or if I am being selfish by wanting to keep him here with me where he has less social exposure, and where he has to care for himself, even on his bad days, while I'm at work. He has gotten hurt a couple of times, and I really wrestle with what is best for him sometimes. So when it is time to find an alternative living option for soemone, all anyone can do is what you have done, which is to research and find the best placement possible for someone. You gave your all in that area, after giving your all for five long years. Bless your heart, Chris. I hope your adjustment continues smoothly, and that your son manages to make peace with everything soon. You'll both be in my prayers.

Good morning friends,

I'm up early with my cat again today, so will use this time to update you on yesterday's activities. Yes, yesterday was the day that I placed Roger in the VA nursing home.

We got an early start to the day, so made it to St. Cloud by 10:30 or so. The whole process of admission took until nearly 1:00 p.m., and everything went smoothly. The people there were wonderful and very efficient. The timing worked out well with Roger being able to join the residents for lunch while I met with the social worker, so that was a real bonus.

I hate to say this as I fear some of you might feel I'm heartless, but it was not a difficult day for me yesterday. I have become so ready for someone else to meet Roger's care needs, that yesterday felt like a true relief for me. I hope you don't feel like I'm a heartless person, but after five years of nothing but anxiety and frustration, I feel free once again.

My biggest concern is for our kids; our son is having a tough time with this and was simply sobbing last night. He has been so busy working, getting through law school, making wedding plans, etc., that I think he's shoved his sadness to a back burner. Now that all of the above has been accomplished, he's able to come face to face with the reality of his father's illness, and it's hitting him really hard.

The kids are both coming home this weekend, and then we'll drive together to see Roger. I want to be with them for their first visit to help soften the reality for them. It won't be easy for them to see their dad in a facility under someone else's care when they've been accustomed to seeing him here at home in familiar surroundings.

Well, that's my news for today. I hope you don't feel I'm a cold-hearted person, but rather a person who's been worn down by frontotemporal dementia and all of its demands.

Love, Chris

Dear Chris...

So much has happened in your life since we first "met" but I wanted to take a moment simply to remind you how strong and loving you have been and still are. And I also wanted to thank you for sharing this part of your journey with us... a most tender part many wonder how to face or even if such caregiving considerations are an option.

Roger is a fortunate man and he will always be in your heart, no matter where he's living. He will always be the father of your children, no matter where he's living.

My thought is to visit often enough to ease his transition, secure the quality of his care, and fill your own needs. The spot visits by others is an excellent idea and I hope your children are able to frequently add to that mix.

Godspeed to you and your family and please keep in touch with us... Joan Marie

Chris:
You have taken the next step along this Road of Dementia. A giant step and as Mae said you will find it difficult at first. You asked how often you should visit. It is a distance to travel often. You will find that you will want to visit 'Roger more than once a week.Gradually you will become accustomed to Roger not being at your Beckon call.

Take care my friend
Eleanor

Chris, We all understand what being a caregiver can mean.You are to be admired for knowing your limitations and making a choice that could not have been easy.Please, be prepared to adjust to your husbands absense.The difficult chores of the day will be gone but you may find you do not adjust as easily as you think.I do not say this to under mine you, I just tell you this from my experience with my mother.One time I had seperation anxiety so bad that all I could do was cry.I was so fortunate that some of my forum friends reconize the symptoms and called me.I lost my mother a year ago and have not gotten use to her not being with me.You are so use to his being a part of your day that you will find it hard to adjust at first.I wish you and your family well.You have reached a fork in the road and I hope the road you travel will be all you want it to be.

Gypsy, you are such a loving wife.You have allowed hubby to continue to lead a normal life and continue to be part of the out side world.You are a attribute and good example for all caregivers.You posses such good character.

Hi Gypsy and May,

What a nice way to begin my day finding messages from you two. I'm sorry that it's taken all day for me to respond to your heartfelt words.

I'm doing well and know that I'm doing the right thing for both Roger and me. I think he is bored here at home, and I'm frustrated constantly having to be on patrol. I'm so grateful for the volunteers who have brightened his day with a walk and have provided me with a few minutes of solitude.

I know that you're right in trying to visit as often as possible. Even though the facility is an hour and a half away, I'm hoping that I can arrange for volunteers to walk with Roger there as well. In fact, one of the women who walks with Roger here has already volunteered to walk with Roger when she travels through St. Cloud on her way to see her children in the Minneapolis/St. Paul area. It will all work out, I'm sure.

I talked with our daughter this morning and she said that she and her brother are both so eager to have their mother back. So much of my energy has been focused on Roger that my role of mother and grandmother has been put on a back burner. It will feel so good to not be on guard all of the time. I know my role as caregiver will not be over, but being able to eat when I want, talk when I want, and to go outside without wondering what Roger is in to, will be such a treat. FTD is such a demanding disorder, and after five years, I feel I've done all that I can do.

I'm going out of town tomorrow and will return on Monday, and then will take Roger to St. Cloud on Tuesday, so it will be a busy few days for me. I'll write with an update when time allows.

Thanks for all of your support!

Love, Chris

Chris, you are a real trooper.Each day I learn how much you love and have cared for your hubby.You have done what it takes to assure good and quality care in the hospitals and at home.You are one heck of a lady.

Hi Chris-I am glad things seem to be coming together for you. I agree with May that if you possibly can go more often do. Is there anyone (family or good friend) closer that could visit in your place some days or that you could stay with for a few days. Our circumstances were totally different as Mike had the stroke in the hospital and was working towards coming home for almost 9 months. Mike was in various hospitals, rehab hosp and extended care both here and a 3 hr. drive away( When he was in the hospital and rehab in Victoria I stayed in our camper van(with the dog) first on the hospital grounds and then when he went down to rehab I stayed in a campsite so I had power(it was winter) I had to be a squeaky wheel on several occasions-even caught a couple of med errors that could have been serious. (he always had this habit of not wanting to ask for anything-some staff took advantage of that)I also frequetly took goodies for Mike to give the staff(I would leave a note telling them to help themselves)I also made sure to thank staff that did care.I know most people can't go every day but I would try to go several times a week at least for awhile. Does he need reminders to eat? I found that I needed to be there lunch and supper(I refused to go for breaky) or he wouldn't eat-they often didn't take the covers off things for him or put sugar and milk in coffee. I got to where I took muffins and coffee for our breakfast when I went in around 10-he usually hadn't eaten his breakfast-his tray would still be on his overbed table. He used to enjoy going to the cafe. for a snack and once I had a lift we could go out for lunch on weekends. I couldn't bring him home until we had a ramp built-then we tried it for several before he came home. I don't know what I would do without the help we get-5 days min. 3hrs, max 5 hrs. It costs us but is worth it.He also gets 1 bath a week at the local facility and the pool once a week. We could have service on weekends but that would be another $100 a week so I cut it out pretty quick(the dr. insisted on it after Mike was in the hospital 4 years ago Christmas.)I've rambled long enough but I sure feel for you at this difficult time. YOU will find what WORKS best for YOU and ROGER.My thoughts and prayers are with you.Gypsy

Chris, From my experience and not being able to do so, I would , astrongly , suggest more time , if possible.Never go on the same days as tey know your routine.I do not say this to get into your business, I say it cause , when the cats away the mouse will play.They need to know you will be there to over see his care and well being.Just watch everything around him and any changes.You are the one who decides what is best for him.Never allow them to have you second guess that.I am so sorry you and your children will have to face life with out Roger as the father and husband you all need.My heart goes out to all of you.

Hi all,

I thought I'd write a few lines updating you on the nursing home journey. I've made arrangements to have Roger placed in the VA nursing home in St. Cloud this coming Tuesday. Yes, I changed the two-week respite status to a permanent status. Although frontotemporal dementia doesn't necessarily fit the seven stages of dementia profile, he'd certainly fit into the stage 6+ category.

I did tour the state VA facility in Fergus Falls and found it to be absolutely gorgeous with many services available to the residents. Of course there is a waiting list, so have added Roger's name to that and will hope he can be fitted in there within six to eight months.

The main issue that has concerned me is the lack of opportunity for Roger to walk when he's in St. Cloud, but his need for walking seems to be diminishing lately, so maybe it won't be as big of an issue as I was thinking. I'm hoping that I'll be able to come up with a volunteer system in St. Cloud to help provide for his walking needs, but that step will have to come later.

Being Roger will be placed in a facility that's an hour and a half away, how often do you feel I should try to visit him? I was thinking once a week; do you feel that's sufficient? I need your opinion.

Well, that's my story for this day. I hope you're all doing well.

Love, Chris

Dear Eleanor & May,

Thank you for your responses to my recent message. I value hearing from you and gain so much strength from your remarks.

I talked with the social worker at the VA nursing home in St. Cloud on Friday and have two weeks of respite care arranged for the end of the month. In the meantime, I have plans to go to Fergus Falls on Monday for a tour of the VA nursing home there and to likely have Roger's name placed on the waiting list there.

To be totally honest, I am ready to place Roger right now. When talking to the social worker on Friday, I learned they had an opening in their dementia unit in St. Cloud and I hate to let that opening slip through my fingers. So, I guess I'm thinking that if things go well on Monday and placement in FF seems affordable, I will move forward with getting Roger placed in St. Cloud sooner as we wait for an opening in FF.

It is seeming more and more right to move forward with this decision, and things must be falling into place for some reason. I need to move forward with my own life, not only for my sake, but for the sake of our kids. I've reached the place in my thinking that this would not only be better for the kids and me, but also better for Roger.

I'm busy making cookies, so I best press on.

Love, Chris

Chris, you are the one who knows when you have done enough.You make the decision based on your situation and never second guess it.It is not an easy place to be mentally.I asm so sorry you and Roger have been faced with this problem and you both are young.This is a personal choice that only you can make.Listen to your body and what it is telling you.That will aide you in this decision.Have faith in your ability to make the right decision.You are the one who is living this 24/7.It is a very difficult decision , I know , I had to make it for mother.I made it because I knwe I could not keep her safe from her self.No other reason.You make the decision and not seek affirmation.

Good Morning Chris.
Welcome to Oct. where the heck did Sept go.

I am happy to read that the Wedding went well . It is amazing when you go away and get some of your old life back.. At first I know it feels strange to be enjoying yourself. No matter how hard you try , the Caregiving comes back into your MInd. But once you have released it for a short time you can enjoy some life.

It seems as if you are having some good luck in your NH looking. It is such a difficult time for you. Roger being so young makes it more difficult. As you say Roger is Happy with his stayus, therefore the Transition from Home to NH is easier. I know when we took Jim to the NH for the first day, I found it was like taking him to the Day Centre. Jim was used to seeing people not talking and sitting and just walking around. The Transition was made easier for me.

I fell last Sat, [3AM ] landed on my left foot and brokle it in 4 places. I have the foot in a walking cast this morning it was easier to walk when I got out of bed. It will start aching as the day goes on. I try to keep it up. I Havent seen Jim in 8 days, .

My SIL is visiting from Victoria, British Columbia, Betty will be coming today to stay for a few days. Betty is a Vegetarian , therefore I will let her cook. Betty came to Toronto to help her Nephew and wife care for a new Baby [ 3rd child] Betty stayed with Sharon [ daughter] and she will be bringing Betty to our HOuse. I know one thing we will enjoy each others Company and do lots of talking. My Brother George died 30 years ago.

I hope you are enjoying the Great Weather also. I am sad because I have work to do in the garden, but it is too dangerous for me to be doing garden work.. Oh well we can sit outside and enjoy the visit.

Chris I hope you are okay and the stress stays away from you.

Take care [[[[[[HUGS]]]]]]
Eleanor
Sunny 70 F today ---21C