We have had some difficult happenings both at the residence and at what he calls" your house"
A few days ago Kevan was having breakfast and he tells me and his nurse that was suddenly above the table looking down at what was happening. It lasted only a few seconds but it was upsetting for I'm.a few weeks ago or maybe months, he tells us that his three deceased brothers came to his room and wanted him to go with tem. He says they asked him to go home with them. Hallucinations?? Who knows!! He has started crying again. This had been a regular occurrence for about five years but that stopped when the aggression started. He said he is sad because of how this disease is affecting me and my life. I cried with him as it was so sad for him. He goes from being part of the group realizing he has a health problem to being angry that he is there because all the others are nuts, insane, mentally ill but he is normal. He is so upset because he bought me a side table with a drawer for my knitting so " the bad Yorkie" can't get it, but cried because he is not able to put it together. He also bought a small cabinet for over the toilet in the main floor half bath but same problem he can't put it together. I put the first one together and will try the other today. yes I took him shopping!! He was so capable before but now that has been stolen from him by this terrible disease. Next week things will be different. Fronto has so many ups and downs. One minute loves you the next comes the nasty aggressor,then the crying or the you know nothing, I am the smart one. Every now and then comes a glimps of the old Kevan but not for long. Now I am not able to bring him home over night or maybe not even for a few hours as he gets to upset and is difficult when I take him back. He told me yesterday that I need to build a new life on my own and he needs to build his life there. I don't know how this can be done as he calls and involves me in his life there but I have not been able to move on yet. He is unable to understand how the changes in him affect me in every way or how this disease demands so much from a caregiver.
As a fellow FTD caregiver I know how difficult it can be. My husband was much further along than Kevan was when he was dx'd so we didn't experience the ups/downs within the context of illness, I just thought it was a midlife crisis.
I have no advice to help you and he through these difficult times other than to send warm ((((HUGS)))) your way and hope it gets better.
You know there is really no advice anyone can giver us as this disease does what it wants to who ever. It has no mercy and just moves along as it chooses.
It's just nice to have somewhere to go to just vent knowing that there are others out there that understands and KNOWS!!
Your post brought me to tears because it brought back such a poignant memory. My husband was home, lying in bed and looking out his bedroom window. It was a spring day, bright with sunshine and bright with flowers and greening trees.
So, he was looking out the window with such an expression of peace and contentment. Generally I refrained from asking him questions because I didn't want to provoke agitation or hostility. But at that moment, it just slipped out, "what are you looking at?" Quite clearly and calmly he responded, "oh, I am just enjoying the snow".
I used to believe that everything he told me was true, because he was the most honest person I had ever met. A few years ago he was telling me all kinds of things that were happening to him at Day Care. I decided to check on these things with the supervisor and she told me they weren't happening. His geriatric nurse explained what was happening and why and it just broke my heart. Now I just listen and only intervene when I think it may be nescessary. I just watch closely for any sign of abuse. I can't imagine what it must be like to have this terrible disease take over your mind and you have no idea what is happening to you. He has decided that we must make our own lives now and he has not called me today. He often calls three times a day. I guess I am really going to be alone now. He has decided to move on with out me. He told me he would never leave me but he sure has broken that promise and even though it is not his fault it still really hurts. I was an abused child with a bingo nut for a mother and I was alone most of my young life with just my dogs. Now I'm alone again with just my dog. Life sure can be cruel.
Yes, life can be very cruel. It seems so unfair that when we have weathered a series of major problems, or perhaps one great tragedy in our lives, we rebound, find our wonderful spouses and think that now we are going to live happily ever after.We've gotten through all the bad stuff, and now we've married this incredible spouse that God brought to us, and He would not be so cruel as to have terrible things happen to this blessing of a marriage. Well, guess what.
Maybe we just have to have faith that just as terrible things can happen in our lives, so can wonderful things happen.
Your right but right now I can't see anything wonderful happending in my life. I was looking at the Christmas decorations I put up and asking myself why I bothered. I'm just about ready to take them down and just put up my ceramic tree. Having them up is making things worse.
I'm not sure how I feel about my Christmas decorations this year. I have the Nativity set up--that is always the first thing. I have a few other pretty but not-too-flashy decorations here and there. We had a lovely Christmas last year--Larry's last--and I remember it fondly. I think I enjoyed it all the more because I realized that it was possible it would be our last one together. This year I'm in the mood for a peaceful holiday and quiet reflection…just sitting by the fireplace or walking in the woods and thinking about him. I'm considering a tree--not too big-- decorated with simplicity and some of the most meaningful ornaments. But I'm not really in the mood to actually go get one and set it up. Maybe closer to Christmas I will. I did get some nice, low-key, religious Christmas cards that I will send only to the closest family and a friend or two. Getting through the autumn holidays wasn't too bad, because I went out of town. Even so, I had flashes of excruciating pain…just missing him so much…"seeing" him there at the Thanksgiving table in Vermont with the family…and of course, coming unglued again at the cemetery. I am almost afraid of Christmas…I'll be right here at home, where we were together last year…I just seem to be missing him every moment, in every room, at every meal. I guess I had better research online how to get through the holidays after a bereavement…I think I'll need some tips. (Hope Joan hurries up with her next post…ha,ha.)
Kevan has decided that it is best that he not come to our home overnight anymore and that he only visit for a couple of hours once a week. He said he feels safe in his own bed and now refers to the LTC as home. He is having more trouble taking direction and he is sleeping more. I noticed that his balance is not so good when he was walking toward me and he said he is having more trouble with it. He also said that people are asking him why he is marching now instead of just walking. He is also spending more time listening to music and just watches some sports on TV. So many changes! He wants to come here for Christmas Eve and day but I reassured him that anytime he wants to go home I will take him and that it will be alright. It's really difficulty to see these changes but it seems to be alright for me as I realize he needs to be there and does better there. I just don't want to do things that will make it difficult for him. Yes I am getting better at adjusting in mid stream but that doesn't mean I accept what is happening to our lives or am less heart broken. I was out for a Christmas dinner last night and a much older and wiser lady who has gone through this walk tried to reassure me that it will be different when it is over for him and I don't watch this terrible disease do this to him. She said she found it easier knowing her husband was no longer in pain once he had passed on. She still misses him and their lives but the pain of watching him slowly deteriorate is gone. She said she let go of all the bad memories and cherishes the good ones. I don't know if I will be able to look at it the same way or not.
Jazzy, My husband does not have FTD but a combination of vascular and Alz. what I have found that helps is when he asks a question or tries to say something I just agree, nod or say yes or no and that seems to be okay. I can no longer make out what he is trying to say so I have stopped trying to understand. If he tells me "what those people did" or "that people are stealing" I just say okay or oh and let it go. his speech is completely garbled now. I sat with him at dinner last night and see that he no longer uses eating utensils but eats with his fingers. We are in this together.
Kevan is not as far as your hubby but I expect that next year at this time we may very well be. He does talk about things that he thinks have happened and I just let him talk. I do check up because of one PSW that causes Kevan's aggregation to get worst. This gut refuses to handle an outburst like the other PSW'S do and they don't have the same problem. I sent a report from a research to tell them how to handle situations and it has been better. This other guy is on a head on course with me very soon. I think he is abusive and will not tolerate it. It's progressing and there is no stopping it. I just pray that they will find a cause and a cure soon so no one else has to go through this pain.
His Dr. Called me yesterday and there will be no more overnight visits, no full day visits. I can bring him home maybe once a week for a few hours in the morning but take him back before lunch. All the things he is telling me are not happening. He is not staying up all night, he is sleeping but he is having dreams that he is laying there awake going over things that are upsetting him. How can he be sleeping and trying to fix a problem with my garage door opener?
I don't understand this disease. He told me that he is now having trouble playing solitaire on his computer. He says he can't see the moves now. I have found that he can't do any jobs now as he can't see the process. He was always such a handy man but that is gone. He was a computer experts but that is gone. Patience!! Gone! iT'S ALL GONE!!! When he comes to visit he wants to make himself a coffee. I have a Keurig. After he leaves my machine has to be shut off and reset. Won't work!! I have no idea what he does to screw it up!!. It's so hard to watch these changes. I have such a hard time as he sounds and looks like he always did. He is not as agressive as he was but his memory is not good anymore. He will go to tell me something but it is gone before he can get it out.
As for me, well I am much more comfortable living alone. I'm now doing more "Good cooking" and sleeping all night now with just one look at the clock. I have found a support group close bu and also a group at my church. I don't want to just go out to eat all the time but would like coffee outings and joining it something constructive but not volunteering at a residence. I'm not there for sure. Today is his Christmas Tea and two of our five kids are coming. Kevan has stated that he wished he had not asked them to come. It's only for an hour but he is really stresses about it.
I will be having Our Christmas Dinner the evening of the 24 th just in case he has to return early Christmas Day. I think next year I will go and have dinner with him at the residence. That will be better for him and likely for me as well.
Hi Jazzy, I'm glad to hear that you have settled in and have started cooking and are sleeping well. IMO, there's nothing like sleep! Maybe you'll find someone in your support group who would like to join you for outings, not for support purposes but just for socializing.
I know what you mean about Kevan's inability to fix things anymore. That involves the "executive function" of the brain, which governs planning, organizing, and decision-making. The prefrontal region of the frontal lobe of the brain is thought to be the source of those abilities, so when that part of the brain deteriorates, as it does in FTD, so do those abilities. Even though my husband does not have FTD, part of his frontal lobe must be affected because he long ago lost the ability to plan or organize. Like Kevan, he was very handy. I think it's so sad to see these technically and mechanically gifted men reduced to confusion when faced with a simple problem.
Hope the Tea with your children works out. Maybe Kevan will relax after he sees them. Hang in there!
We had a good time at the tea. Kevan put on a good front but he was really stressed! He hung on to me the whole time. As we were leaving he said "thank God this is over". I was being driven home so I couldn't stay but I think I will go and have coffee with him in the morning. Maybe take him to MacDonald's, he loves their coffee and fruit and fibre muffin. He has days when he is so sad that it just breaks your heart. He was always so up beat and happy. So confident and self assured, but that is all gone. I always felt so safe with him. I never worried about anything because I knew he was there and everything would be alright. Now the rolls are reversed and I have had to be all of that for him and it is a roll that I am so afraid that I can't manage as well as he did.
Don't worry about actually feeling as calm, upbeat and self-assured as Kevan was when he was well. Just try to ACT that way. If you do it enough, Kevan will believe it. It must be working for you if he hung onto you when he was stressed. I act calm and confident all the time and sometimes I even fool myself! But I wonder what will happen after all these years of acting? I guess I will either be qualified to be a stage actress or I will have totally lost my grip on reality!
It totally astounds me how some you on this site who are living in this terrible dementia world can make another laugh and feel good as you did me tonight. Each of you deserve a medal of honour or at least a good night sleep with no interruptions. Maybe some of your wisdom and insight will soon rub off on me and I will be able to give back to others instead of always receiving.
Our son is coming to fix things in January. Kevan finds the time frame frustrating because he never left things to do later. If he could do the jobs they would have been done now but with Christmas and our son has a life it will have to wait. I'm happy that he will come. It must be terrible for our partners to loose the abilitiy to fix or repair things when it was second nature for them. I try not to tell him about these little jobs but he goes around the house when he visits like an inspector and can find them. It astounds me how observant he is, he misses nothing. If I am sorting out a box of items and have not finished when he gets here that upsets him and he has to put things away, even those that I had decided not to keep. Frustrating for me but I just let him do what makes him feel better and re sort after he is gone home.
Last night he called to say good night and talked about the tea. He had a good time but did find it stressful. He told me that he didn't expect to enjoy it next year like he did this year as he said" maybe I won't even realize what it is" He also asked me to make sure I don't forget about the DNR as he is afraid to end up a vegetable. He was describing other residents and made me promise to not let him end up like they are. That is a promise difficult to keep, but I still promised. He now seems to be realizing where this disease us taking him and is becoming afraid. It must be a terrible realization for him and it's not something I can help him with, just change the subject fast.