As many may know, I have been really spun up this past summer largely because the girls, two of whom live overseas, have been having what I call Happy Days all summer with trips and beach outings etc. And it is not that they should not have fun but it seems that not one of them took notice that I have not had a break in more than a year and my bil who has been a godsend, has been tied up caring for another sibling who just recently passed away. While they have not been here since April for a short visit, there are telephones, and stationary to keep in touch. I, frankly and sick of hearing things like " We are so thankful that dad has you" and " you are doing a yoman's job taking care of our dad...( translated to my ears. so that we don't have to).
Well one of the girls is coming in Nov for 3 weeks. Her letter said, " now I have free time to come stay with dad so you can take a trip" to where at Thanksgiving and Christmas????
But the point of the question is this..we have a neuro visit while she is here. My bil has been to this doctor with me and has provided valuable input..but I have not take our youngest girl along on any visits and to the best of my recollection there has not been a neuro visit when I am not with DH.. That is one doctor I will not trust him to see without me. Same for cardiologist..but for simple follow ups and labs etc yes..someone else can go along as long as the doctors know the players.
I guess my question is, should I allow this daughter to come along to this appointment or not. If the doctor were to ask me How I am doing I know I would hold back apart from telling him I am being treated for anxiety...I would not want to even go into it with DH present because I don't want him to feel badly and he always says " I hope I am not the cause and if I am what can I do to make it better"...see my situation?
I sent each of the girls a synopsis of the neuro's observations earlier this year and the reply I got was " interesting and it is what you have been saying all along"...
Any ideas and suggestions are welcome...some days I don't know which way to turn.
Mimi, I did this with one of my DH's sisters. Anything I wanted to impart to the DR., I sent ahead of time. The appointment was for DH, and his sister had the chance to ask questions or comment if she wanted. While she and DH headed to the waiting room, Dr. responded to me and then I checked us out. All points covered. Your daughter's eyes are going to be opened regsardless of whether she attends the appointtment or not. Personally, i think I'd want her eyes opened wide.
Mimi, got to agree with Carosi2*. I remember when I wanted to tell the Dr. something out of earshot of my DH, I gave her a sheet of paper with a comment that I needed to tell her something without him hearing it. She asked me to step out for a moment to check some forms. No problem for her. I clued her nurse in before hand too. As far as going on a trip, why not go for a couple of two or three day jaunts to anywhere, and happen to schedule them around your Dr. appointents? I know it is strange when ya really don't have anywhere in mind to go, but it would be good for you and your daughter. Sure would bring her up to speed. Take care of yourself Mimi.
Mimi, I agree with Carosi2 and janny. I would take a short trip to a motel where I could just lay around and recharge, two or three nights would be heaven as I am so tired. Hope you can do something like that and also talk to Dr. A dose of reality for daughter would probably happen if she had a 72 hour or so stint at caregiving, although he probably wouldn't act the same with her as with you. Hope you can have a bit of a respite.
If, when you take those short repites--arrange to check in on a limited schedule. She won't feel abandoned when she faces things, and you won't be at the mercy of being called for every little thing. This will also ease youre mind while gone. Just like when leaving little ones with a sitter.
Mimi I think the questions you have to ask yourself about upcoming Neuro visit are: Do you expect anything more than his observations as to the rate of deterioration. In reality, has he ever told you anything you didn't already know? (daughter's comment, "interesting, and what you have been saying all along ...) Give you daughter a list of questions to ask if you need specific answers. There is nothing that he or any MD can do to alter the course, treat or cure this disease. The best we can hope for is adequate management of the symptoms. If you have no pressing issues with DH's meds let the girl take Dad, nothing like a dose of reality to bring Dad's status in sharp focus. Why would you be concerned about discussing your anxiety?? Your requiring treatment to cope with the stresses of caregiving is more the norm than the exception! We're all human and find ourselves in situations where our plans and dreams have gone up in smoke, and day to day responsibilities far exceed anything we ever dreamed of. You're stressed out??? Who among us isn't?? That's generic to the world of caregiving. Note all the articles published on caregiver burnout. Who among us doesn't tap into their DH or DW's Ativan every now and then? Take a break and enjoy it The Neuro visit will not produce anything you don't already know
Mini: Would it be possible to just change your dh's appt. date and wait until after the daughter leaves to do your regular routine? What is important at this time if not to put any more stress on you....take care of yourself first.
Lots to think about here. Lots of good and interesting suggestions. I have some free time tomorrow meaning no appointments for DH or me other than getting gas in the car and hit the pharmacy and grocery store.
I may drop by the neuro's office to find out about the possibility of a private meeting with him. I know he can't do anything other than help keep things on an even keel as best as we can. Maybe he needs info ahead of time as regards my personal situation so he can address the issues of stress and anxiety etc to that the kid will get the picture without my having to tell him in front of her that the largest part of my upset is my view about how uninvolved the girls are...while they all can't be physically here as none are local, as I said, there is something to be said for calls and notes and cards....They have been so busy living their lives and so busy with all the Happy Days Stuff that they don't THINK about anything else...until they have a gap in fun times...Clueless....and I know I AM THE ONE WHO HAS TO GET PAST IT... Think I'll call the lawyer and redo my trust.....if this is the best they can do for their dad while he is here, and inasmuch as the bulk of the assets are mine sole and separate, well you get the picture....
I agree with Carosi2 to take a few small trips. You might not feel comfortable leaving your hb with your daughter for 2 or 3 weeks, but just not having to do daily tasks and getting out of the house every day to do something you want to do should be a relief for you. Or even plan being away for a week or more after she has had experience taking care of your hb on her own.
Do make a list of things that you want to do. It is easy, when suddenly confronted by freedom, to not know what to do.
I always e-mail the psych and neuro any time I have a question or think there is something notable to report. I always send my journal to the doctors before any appointment (a few days ahead of time) with any notes they should have.
I think it would be helpful for her to go on the doctor visits if you don't reschedule them. If you don't reschedule, consider scheduling fun stuff for yourself around the appointments or decide if you don't have to be there. If you let her take him make it clear to her what you need her to do.
This is an opportunity to take care of yourself. Do take advantage of it.
Mimi....If you have answered this question before, I don't recall your response so I am going to ask again. How does your husband feel about this? Why doesn't your husband call and encourage them to make a visit? I know my dh's two sons who live in Illinois basically ignored him for the past two years. They might have called a couple of times a year, but that was it. As his memory got worse I think his memory of them faded. My dh didn't really seem to care a whole lot whether they called or not.
When adult children live far away from the parents I do believe they become more and more withdrawn from what many would think of as family relations. They are busy with their own lives and Mom & Dad take the back seat. Are our daughters married and have children of their own? If they live close by then those children might visit more often and call.
I went to a party last Sat. night with 50 guest...it was a beautiful birthday party for a friend turning 90. His one son who came to the party was so disgusted at his 2 brothers and 1 sister that didn't even come to their dad's 90th birthday party. I really hate that you are so upset about this situation and wish I had something better to say to you. You have enough on your plate right now and keep remembering you are important and you come first.
You know your neuro and your husband better then we all do here, but I don't think his neuro would really want to be involved in "family matters" so to speak. He might not say what you want to hear and you will just be more upset. These are adult children and they have to live with whatever choices they make regarding their father.
Been thinking about everyone's advice and suggestions. I have talked to my wonderful bil and he is going to help me around this place with projects that need done and that I need help with such as redoing the screens and repainting the sidewalk that terracotta color. Apart from the Neuro visit daughter is going to deal with those errands and whatever else comes along. My bil loves to work on cars and I have found a couple of "junk" yards where he can get parts to rebuild his Beemers. Then I plan, when bil is gone, to be gone myself. I won't likely head off to a motel for overnighters but if the weather is good, I am heading out with my camera to who knows where and shoot some pics. If it is raining I will play in my garage and gather books for my friend's spring book sale, and sort stuff out, get Christmas decorations, do my holiday cards, and let someone else sweep, hoover the floors etc... Kidlett is planning to see some of her cousins at the first....she needs to visit with them too. One thing I don't want and that is to hear all about her summer fun...I will leave if she starts up with that me me me stuff.
Got an email today..seems daughter is going to remain in SOCAL for a few more days...as I said the cousins want to see her..Good thing I didn't bank on a trip to Italy.....
Yeah with the holidays coming on fast, I can have my fun doing the things I want and not having to do the meds every morning, fix meals etc...I am looking forward to just doing what I want. Already started on MY projects..my computer room is starting to take some shape...got some boxes picked out for shipping the Christmas goodies overseas, spotted my Christmas decorations in the garage and will be getting them organized...still unsure about a tree. I can just see Xean the Warrior Princess kitten getting on the piano and taking a giant leap into the tree....she has already got up to the chandalier over the kitchen table...saw the thing swing to and fro.... And I think my Valium is helping though I only take 1mg a day...
if we continue to expect that family and friends and yes even our own kids or stepkids will come to our rescue as caregivers we are going to get depressed and expect too much. i think it healthier for ourselves to accept that (most of us) who complain about family are totally alone in this dreadful depressing job of caring for our loved ones. once we can accept this i believe its easier to move on and just tackle what is the agenda of the day and not wait on help or comfort from those who obviously are not going to offer of themselves. it makes no sense to make myself sick or depressed over what will not be, so i chose to not expect anything and if it happens, then make the best of it and be grateful- but not dwell on the aspect of having family who cares. divvi
Mimi: Your comments here were the right move. As you can see, your talking to people who know and may even care more than your own. There's a lot of endurance amongst all of us. Depression? I've lived with it the last seven years. I'm being treated for it. Tried to go without treatment and it was not good. This is not who you are now, it's who your having to be. I recommend treatment first. You'll feel better I promise. This job only gets harder and more painful, you must be ready and you will. I have had absolutely no help for the entire seven years and we are in stage 6. I don't always get into the forum but I read it and these kind friends have provided great counsul. My approach to fighting this battle? I stopped thinking of all the sadness and fear. Just blocked them out. I immersed my self in hobbies (very limited) that allowed me to look forward to my next little bit of time to return to the hobby. This allowed my thoughts to go somewhere else. No one can live in sad immersion day after day. I decided that taking care of my Wife was my new job, and I would do it as I did jobs in the past; the very best I could, without unreasonable expectation. As to family, I found them, in the end to be a drain on me. Were I to fail at my job the care would fall to them gold-for-bid. That said, I finally decided that I was going to provide comfort for my loved one in her last time and this sacrifise allowed me to decide that I would do only what I wanted to do, that I would devote my limited emotional resources only, only to those things that I felt were meaninful. If I choseto NOT envolve others because of their enherent complications, I cut them out. Mimi, its about your husband but it is also about you. You make the rules, you do what is best for you. Forget about what others might think, you must survive this and steer clear of diversions. Finally, I sought out a therapyst. Great decision. Life changing. They'll be on your side and welcome your very private venting. It's cathartic I promist. Well, I've said my piece and thanks to all of you who have helped me more than you know. Bless us all.
Saw my MD today...spent an hour with her..God Love Her!!! She mentioned another anti anxiety med to try if the Valium does not work...but the side effects scare the bloody hell out of me.
We talked about respite...she said I need it badly....and when the daughter arrives now on the 13, I am turning the tasks of looking after her dad to her...I may not leave the area as in stay at a motel somewhere or I might...but when my bil comes up I have projects I want done and once I see this finished I'll feel better about seeing things in better shape....
I also plan to escape and I mean shove off for the day, go shopping, go shooting photos of nature, just get the hell out of the house.....I told the doctor that on the one hand I feel badly when he wants to help ( but as we all know that is no solution with errands) and I need the time for running errands just to get away from him for some time.
Today I was supposed to go to the grocery store...well I went to my favorite shop, and a group of ladies were there, some I knew others I met for the first time and I sat there for the afternoon gabbing about all sorts of things and then went to the yarn shop to get some goodies to make some scarves which I wish could compete with Joan's spectacular creations.....and I just fooled around...did fill the van and truck...
My doc also gave me a ref of a lady who goes around with people to seek out and determine what facility would be the best one to meet out needs before selecting one to get a LO on a waiting list. I will start doing this next week. My Doc/s nurse just placed her mom in a facility near us and says she loves it there and it is very nice and the cost is not too terrible and I was told that if the spouse was military or military retired some of the facilities offer a discount to vets..
My head tells me I should still be able to do this job full time..and my doc said even in home help for some, and likely for me too, does not remove the stress based on very bad experience in the past with my parents and my own lack of trust in strangers....
We see the neuro next week and I think I will have our daughter who will be visiting, go along. But before that meeting, I intend this weekend to pen out a message to deliver to the doctor well ahead of time letting him know what has been going on with me so that he can address the questioins about " and how are YOU doing in all this" in such a way that while in a note I'll let it all out, my anger etc over the past months, but in such a way that without risking burning any bridges or causing hell in some other way, he can let it be known to the DD just what I am up against and that they too need to be aware of things and be attentive. In this way he is not accusing them of not being caring but reminding them about how serious this disease is not just for the victim but for the 24/7 caregiver...that they need to do their bit in whatever way they can even if it is just supportive calls and letters as none live nearby. Apart from that, soolow's advice is well worth listening to and taking...I have even said as much myself on these boards but some how have not been able to follow my own advice...
I just feel like I am being punished and for what I don't even know...