Yesterday was a bad day for me. Well actually I don't remember a good one for a long time now. I have had a hard time getting used to being alone and my confidence was not good. Every time I get into a good place Kevan berates me and assures me that I am not doing anything right. When I get sick or hurt like I gave been for the last two weeks one of my kids accuses me of playing games.
I understand that Kevan's disease causes a number if these problems but not the kids. A person in my support team wondered if Kevan does these things to me because he resents my not being sick with his disease because he keeps telling me about memory problems I have or not being able to do the things I used to do.reminding me that I am getting old and that I am in denial.
I just want to bury my head in the pillow and not get up some mornings. I went to my Dr. yesterday, I drove myself because I couldn't get anyone to take me. It's 45 mi there and x45 back. When I got home I was so sore and then this conversation with my son and Kevan was just to much. I sent everyone an email and told them I was fed up and that I had shut off my cell and would only get voice mail once a day. I told them from now on I am looking after me.
Kevan sent me emails telling me he loved me, sent ecard telling me he loved me. I refuse to answer anyone's calls.
My Dr. Says I have some weeks to go before my back and hip are healed enough to go to physio.
This is not the life I had expected to gave at this age. Kevan has an excuse for the way he behaves but it still us hard to deal with. Hurts like hell.
Kids need a good kick you know where.
Well that's it for my tale of woe.
I am not being smarta**ed when I say comments and advise welcome. I just don't know how to take care of me and close my ears and heart to all this.
Jazzy, I am so sorry for your pain. I wish there was some way I could help. All I can offer is take some time for yourself. I like the idea of not taking the calls. You need to rest and relax. Can you buy yourself some flowers? I find flowers in the house lift my spirit. Get a fancy coffee, or have your nails done. Or just sit back and close your eyes and do nothing. Make this weekend yours.
I'm sorry you're going through this....one of the things I did was simplify my life as much as possible. Bill payments set up post dated for 12 months so I don't have to think of it and then a adjust once a year. Someone to do my snow removal. Will buy my firewood cut and split once I'm out. I also turn my phone off at night to get some peace and screen my calls. You are stronger than you think you are....you looked after yourself and Kevin when he was home....that is the hardest part of this disease. You moved twice....that is seriously hard. Now if people aren't nice or helpful...tune them out. Just give yourself some time to heal and get your feet under yourself. You are amazingly strong.
Last night I called a local restaurant to order a rib dinner with baked potato and coleslaw and being bad, a piece of cheesecake with strawberry sauce. They had trouble putting the delivery order through. Well guess what? The power was off so no treat for me. I really was feeling down for sure after that. Do you think something was really trying to make my day bad?? LOL
I have received two emails and a phone call from Kevan today but I am taking time for me. I am going to order my rib dinner today.
I refuse to get down again today. I never realized how difficult this disease is on the caregiver. I thought when he went into LTC that it would be less anxiety for me but he is determined to make my life as difficult as he can. I was told by the nurse that he is trying to use one staff member against the other. He is a real manipulator just as they say in the symptoms.
Well time to get up off the heat pad and walk a little.
Hi Jazzy, glad today is better for you. By all means, order your rib dinner and a double portion of cheesecake! You deserve it.
As Amber says, you are very strong and will make it through this. For me the hardest part of this illness was when Rich was in the stage Kevan is - manipulating and mean (did I mention totally selfish?). He said very hateful things which still haunt me today.
I think getting your voice mail and emails only at certain times a day is a great way to manage any "negativity". It keeps YOU in control of your life, not Kevan and the kids. Then you decide when and how you choose to respond.
I was concerned that I was beginning to be seen as selfish and cruel. I'm lonesome and miss the man I have lived with but this one is making me want to never see him again. I know I won't stay away but I have to get some control of my life. He wants to live there but still live here and run my life as well. Not going to happen.
Thanks for listening and helping me. I need all the help I can get to survive this.
Yes, definitely order in. If for whatever reason it doesn't work out, think of another self-indulgent thing to do for yourself. (I remember trying to order Indian food one night, and it did not go through--read in the paper the next day that the restaurant had burned to the ground. Sheesh.) In terms of people who bring you down, whether it be husbands, kids, "friends" or whoever, I think we just have to tune them out, distance them, and if possible ("friends" for instance) just eliminate them from our lives. I think Wolf said something about that in one of his posts somewhere--something to the effect that if people aren't on his team, he's outta there. I think limiting your technological communications to certain hours is a great start.(And keep technology out of your bedroom, or wherever you relax and rest.) I had to set limits with my disabled daughter who lives in a different time zone and just wants to call at all hours and chat about her problems, after a perfunctory inquiry as to how DH is doing. My other daughter is always going on and on about her marriage problems….yeah, right…needless to say, I am not going there. Tune out, tune out, tune out. Jazzy, I think focusing on yourself is a necessity, not an indulgence. Take your walk, get on that heating pad, control the emails/voicemails, and have a great dinner.
Selfish is a terribly misused word in the english language. We use it to describe people that care more about themselves than others in a bad way and then we use the same word to describe defending ourselves from others.
Keep your eye firmly on the fact that while Kevan has this the kids are having trouble with coping with it all (my sister and I didn't satisfy my mother with our level of support at that time either and she was right), and that you are trying to help yourself recover.
You are defending yourself from real things to give yourself a chance to breath a bit and you are finding a path through very, very hard times.
This exactly is where the rubber of all the nice words hits the road or doesn't where it never will for "hoosiers" but you have a very real chance of learning how to adjust to find that path.
not selfish - boundaries. You have to set boundaries for you. With healthy boundaries in the long run all will benefit if they abide by them. Kevan is different, but your kids must start respecting you instead of abusing you. Kevan - set boundaries by limiting like you are.
Then start on some positive self talk. Find people who think positive of you, even a dear pet. You have been through so much with his disease, the two moves, taking over financial control, etc. - you should be proud of yourself girl. You are a survivor and working on becoming an overcomer of the abuse. You will make it. The move back to your house was a big sign that you want to be an overcomer.
Jazzy, so sorry that you have to deal with more than your fair share of difficulties. I have to say that's it's hard for me to understand the attitude of the kids. Thank the good Lord that I haven't had to deal with that - mine are 100% with me, at least to this point. I think it will remain that way (fingers crossed!) I feel badly that there's this tension between you, certainly doesn't help you to cope with one of the worst situations life has to offer. Keep on venting!!!
I had written all about my day yesterday but when I tried to add it disappeared. Twice this week that has happened.
I didn't have my dinner as a great supporter showed up, drove an hour here and back to bring me groceries and visit. She went through third stage cancer and survived , five years now. I yelled and screamed at her when she would think of giving up. She now says if I hadn't done all that yelling at her she would not be here, so now she is returning the favour. Her husband died during her treatment from COPD. She was told she didn't qualify for home care so she had to do it herself. Now she yells and screams at me.
She brought crackers, cheese, ice cream, frozen dinners from her freezer. She has Edema in both legs from the cancer treatment but she goes steady. It's five years free for her.
I'm sure if a study was conducted on human emotions , dementia caregivers would be great subjects. We go through all if them at sometime on this journey.
Kevan has sent me a number of emails thus week end and ecards telling me how much he loves me. I was told that he has no empathy. I know I will go through all if this abuse again and again and I have shut the world out for a few days before and again now and it works for me. I just have to find away to not let all the mean things he says and the neglect from the family and friends to cause me so much upset. I try but it still hurts so much. I envy those of you who speak of sweet love still showing through this terrible disease. Hang on to everyone of these special moments, you are very blessed.
I SO hear you Jazzy. Our husbands and their bvFTD say very mean and nasty things. When those kinds of comments started coming at me I was devastated. Over the years, my confidence shattered. Even though my husband has been in a facility now for 2 years and 3 months my confidence remains in my boots. Frightening really.
I think this disease does that to us as care-givers when we are so abused. Maybe only a few but for sure me and you. I know it is the disease but like you, I have hugely struggled with not taking it personally. Wolf mentioned something about that recently too which really helped. We have to find a way not to take those horrid comments to heart. Way easier said than done.
I applaud you setting boundaries as those are life-savers. I had to do similarly as I could feel myself loosing big ground and if I did not take significant steps I was going to become seriously ill. I have a long way to go and this site is my go to place.
When my husband starts his verbal abuse, I do not answer the phone. He leaves horrid messages and I do not respond. I also do not visit when he is like that. He can't use email thankfully. I can't imagine how hard it must be with both phone calls and email.
Like LFL said some of my husband's comments of years ago still haunt me today and I suspect will for a long time. We are loving, caring women and to have such horror directed at us cuts us to the core. And we will survive. We are strong.
I was told that the part of the brain that is affected is the behaviour control and it sure is. He is still able to do financial things as that part of the brain is still alright for now. He is very manipulative and a very good actor. Anyone who meets him thinks there is nothing wrong with him and look at me like I am the one doing bad things to him. Every time he does mean things to me he will then send love notes and ecards with love songs. This is just as disruptive to my well being as his mean words.
I will be shutting the phone and email off more often and only visiting when he is not in that bad place.
Thanks katherinecs you were a great help. There are not to many of us with this particular dementia eating away at our loved one.
Jazzy, you and katherinecs are in the throes of the horrible bvFTD behavior with your husbands and many of us still contributing to these discussions have lived(and some still are) your nightmarish hell. I agree, more members are dealing with different dementias, primarily AD, but we can all relate to aspects of the dementia hell. My husband has bvFTD but his disease has progressed so thankfully (?) he is no longer the mean, abusive monster he once was. Although I certainly don't miss the verbal and physical abuse, I do miss his ability to communicate clearly, be able to use a computer or cellphone and to know me. Sadly, these take the place of the manipulation, meanness, etc.
I am truly glad that you and katherinecs can go through this together with an understanding many do not have, but know that Abby*, paulc, myself and others are here to support you as well.
It's good to know that we are not alone. How long before your hubby was out of the abusive,aggressive stage? I know only the technical stages but no one has ever gone through the actual changes in their partner. It's all AD which he has but not the bvFronto. I don't mean to bring back bad memories for you so if you find it to painful don't go there.
There is a song titled 'Words' and the chorus goes so aptly for those in any abusive situation:
Words can build us up Words can break us down Start a fire in our hearts Or put it out
My love language is action because I have had a lifetime of people, especially men, saying words they didn't mean. Their actions told the truth of what was behind those words.
In counseling years ago I read a book called 'Changes That Heal'. It was written for sexual abuse but the concept applies to all abuse - how we take the things said to us and change it to 'stinky thinking'. The book gives skills to change that thinking to healthy positive thoughts, similar to the book 'Boundaries'.
Well, We had our rib dinner and yes I said we. Willy had to share my treat. They were very good and the cheesecake was great. I just wish I had someone other then Willy to enjoy them with.
Jazzy, my DH was never diagnosed for any particular dementia. His doctors just assume its AD. For more than 2 years he was abusive and constantly threatened to kill me . In between he was going to call a lawyer and divorce me. He'd grab me around the throat and shake my whole body. The day I was in the locked car and he was trying to break the windows I drove away and went to my DD's work place. She went home and I came back an hour later. Another day he came at both of us with a big pry bar after we wouldn't open the car and he was trying to break the windows. ( He was using the wrong key.) That day we called the State Police. (We have no local police.) The cop suggested he go to the hospital for evaluation but I would have to take him or the paperwork would take all evening. He actually agreed to go and the cop followed us to the ER door.
For the last 7 months he has been confined to bed and has little to no speech. Others here say they would like to hear their LO say something. For myself, Silence is Golden.
Hi Jazzy, glad to know the rib dinner was finally delivered and consumed!
If you go to the search function and put in FTD it should bring up several posts by abby*, paulc, bluedaze (I think) me and others. It should help with understanding each person's journey with the FTD behaviors.
I am glad to help in any way, but al dementia victims have their own unique journeys, so I can only give you our experience.
My guess is that my husband was in the early stages (like Kevan) for a good 3 or more years. By the time he was officially diagnosed in 2008 he was probably in the equivalent of late stage 4 on the AD scale, entering stage 5. He plateaued for a bout 2.5 years and then started drastically losing functions and is now probably in late stage 6 with a foot in early stage 7.
He has always been verbally and physically abusive since he's had this disease and although he is no longer physically abusive, he remains agitated and aggressive. Unfortunately his agitation and aggression has been very difficult to control. He's been on Seroquel (still is), Ativan, Clonopin, Trazadone, Neurontin, Depakote, Haldol, you name it in efforts to control his aggression and wandering. It is impossible to "distract" him.
If you're not already registered I would recommend you join the ftdsupport forum in addition to here so you can get advice from a community which is dealing with FTD. I visit infrequently because I find that I get the type of support I'm looking for here.
It's a difficult journey, but you have support here.