Do you ever feel like you have reached your breaking point?
Have you ever wondered why you are a caretaker to someone who has lied, stolen, and cheated you for years before they were diagnosed?
Do you ever wonder why you place yourself in second position only to be treated without dignity?
Do you ever wonder why you try to please him (cooking his favorite dinner, taking himto "his" church, and wherever he decides) ....only to be displeased and unsatisfied with you?
Have you ever wonder why he is pleasant and polite of others only to treat you like the enemy?
These last two days he's been a living breathing monster. His agitation levels have increased and he's impossible.
Honestly, I don't know if I can stick this out much longer. He's unbelievably nasty. I admire you caretakers who are in for the long haul....(my desire was that), but I have reached my breaking point!
Sorry....just needed to vent. I am up to my ears in his behavioral problems
Lulliebird I am so sorry that you are dealing with this. I have been feeling the same way lately. I need a break. I am sure you do too. My DH tells everyone how great I am, but then can be so mean when no one is around. Today I had to fix a lot of things around the house. I was feeling sorry for myself that I had to do these things. I always thought I would be in it for the long haul too. But some days I just do not know.
I hope you can get some time to yourself and rest. I am sending hugs and prayers for you. Know that I think that you are doing a great job and have so much respect for you In what you do for your Husband.
I have felt the same as well over the last several months. I have asked my children to help so I can get away and escape every now and then to allow me to unwind and recharge the batteries. We will work out a schedule so I can have some "me" time. I never saw this coming and it hit me like an 18-wheeler.
I am at that point and fortunately 2 weeks from ALF. Different issues. It is possible that I am handling things worse because the alf date is close and I might be loosening my emotions as a response.
lullie, Jackie, deb, cheval and paul - BIG, BIG HUGS to each of you, We all feel this way at some time or other during our caregiving, particularly if we've been doing it a long time. The behavior issues are the worst I think and can really wear a caregiver down, particularly when they are non-stop. Sounds like each of you is facing some form of caregiver burnout (who wouldn't?) and definitely do need some me time and a break. Unfortunately for most of us it is difficult if not impossible to get that time. I've resorted to using my bathroom time as a mini break (when I can) by taking deep breaths and visualizing where I'd like to be (on a beach in the Caribbean!) Helps a little with my blood pressure and gives me something to look forward to in the future.
I hate to always preach pharmacology as a source for relief but this is where an evaluation of meds comes into play. if they are nasty non compliant and generally in a state that doesn't allow you as the caregiver to have a bit of peace then its time to reevaluate an increase or change in meds. believe me after 13yrs its the only way I have been able to stay relatively sane:) and to keep DH in a comfortable mental state. their peaceful state of being is also our priority as well and if we find that happy medium it makes it so much easier to deal along the way. it takes constant monitoring and addressing the meds with your drs input regularly. Ativan is still my drug of choice, and have used it up and down as needed and varying levels of intensity with good results. but some may need something a bit more potent or a mixture. there are many combos of meds out there that allow them to remain alert and relatively happy with good results. be proactive and find that combo or the burnout will continue on a major scale. divvi
As divvi said, and any refusals and behaviors should be relayed to the GP or any other professionals you're involved with.
At some point he will be beyond competency and the truth of who is looking out for whom will be clearer legally. When the medical professionals are on the same page as you are about what has and hasn't been happening such as aggressive behaviours they will not have to be addressed then when decisions about what is best to be done are being made.
First of all, I want to thank each and everyone of you for your input, sharing, and honesty. We are all struggling here...more and more as the disease progresses. Each one of us faces new challenges as we enter new and unfamiliar stage of this cold-hearted thief. We are all trying to do what is right as a caregiver many times sacrificing our own health. This is a "thankless" position. Many of our family members and friends have abandoned us. We face loneness. Some of us face criticism from family members for our decisions, however, they have disconnected so who are they to judge? So each day we take one day at a time...one step ahead of the other hoping that possibly we can hold on just a little longer.
deb4267, I am deeply sorry that you have to suffer along side this monster disease. I wish you many ((hugs)) and prayers.
Cheval, Sorry you've been dealing with this months...I have as well. Some days if literally sucks the love and life out of me. Escaping, with the help of family, is a huge blessing and I am glad that you have that support. I do not. Yes, "ME" time is so important and I can't seem to get enough. Once I re-charge my little AAA battery she burns-out so very quickly. Cheval, may you find some peace and joy as you struggle in your journey. Many ((hugs))
paulc, Oh no not you too! I was hoping as placement was closer you would be able to grab a little sunshine. But yes, I can definitely understand your apprehension and anticipation. Paul, my heart goes out to you with empathy as you face new fears. I support you in your decision. Please be easy on yourself. You are doing what is best not only for DW, but yourself as well. May God grant you the strength and wisdom. Best wishes and many ((hugs))
LFL, Aww, you are always there! You are such an encourager. I am so sorry that the last couple of months have been draining emotionally and physically. You are a precious board-member and we love you! (hugs))
divvi, thanks for your input. You are so right that pharmacological medicines being a god-send. There are not only helpful in controlling our spouse's agitation levels, but us as well. My husband has an appointment with his neurologist in the next few weeks. I do believe that it is time for an medication increase. I know I have burn-out, and I have had for sometime, however there's degrees. I am reaching the end of my patience...and as LFL said "deep breaths".
Wolf, I have been very fortunate that my husband's neurologist has always been on the same "page" with me. I haven't relayed to him the new agitations because Thursday I thought it was an isolated circumstance...(bad day), but when the behavioral problems continued Friday it became clear we need a new medication adjustment. Do they become more tolerate of their medication or is it the progression of the disease? Maybe combination of both? Thanks for replying....hope you have a pleasant weekend.
While we have made some minor drug modifications the neurologist (expert in FTD) believes that L is getting beyond the point of any medications helping her symptoms without sedating her, and we don't want to do that. L has been living at our home longer than expected due to her current meds, behavior changes (me!), and hired caregivers who have helped her have a more structured routine.
Right now she is talking, talking, talking. Doesn't matter if I respond or not. Not a moments peace, no ability for me to do anything because I will be interrupted (I can managed web sites it seems). Something pops into her head and she has to comment or ask a question right now. You would think it wouldn't be that bad, but it is all of the time.
Knowing she can't help it does help me some. But when someone is hitting you on the head with a pan (that was 3 years ago) you don't care so much why it is happening but you just want it to stop.
Successful med adjustments have ALWAYS been difficult for me to get for him on an outpatient basis. We are in rural western nj and quite frankly there are few physicians who are experienced and capable of successfully treating dementia behaviors. The ones who are do not accept patients except through the memory clinic which requires extensive testing. When I agree to have DH tested so that they will see him on an on-going basis, they tell me there's no need for testing since he was dx'd in 2008 and testing will not show anything new. We drive to a geri-psych 45 min each way to have the psych meds prescribed but she is very conservative prescribing small increases at a time and requiring us to visit once a month. The lack of resources locally is very frustrating and problematic when DH gets hospitalized because there is no one with geriatric training locally that is familiar with his treatment and behaviors. It is at best an uphill battle.
FTD is the monster of monsters...and medications are wonderful however, there does reach a point when the doctors have exhausted all avenues to help control behavioral issues. True, it has allowed your LO to live in the home longer than expected with the assistance of hired caregivers however, now all resources have been exhausted. For this I am sorry. You are now faced with making other living arrangements as you cross into unknown permanent waters of what "ifs". As the days grow closer, your apprehension must be overwhelming. Paul, I believe you are making the right decision. There does come a time when we can no longer continue as an ""in home" caretaker. Shortly your LO will be leaving your family home...moving into her new home, but you will still be her "caretaker". Please find peace with your decision. I wish you much success in this transition.
LFL,
Living in a more remote area with any disease definitely is a challenge. Prior to moving to the Phoenix area I did live in a small city in the Midwest. I had an extremely difficult time getting my husband diagnosed and without a diagnosis medication was limited. With FTD, as we know, medications are life-savers. Husband was being seen by a "geri" MD who couldn't find his butt with both hands! I was very pro-active in trying to get him evaluated knowing that he was endangering himself and others as he operated a motor vehicle. I was vocal about having him tested by a psychologist for dementia. Oh, yes the nurse ask him 4 questions and ask him to repeat them...very comprehensive cognitive test. Yes, it's an uphill battle. A battle which wears and tears us down...beats us up..and frustrates the living hell out of us. You have my deepest empathy as I can understand your frustrations. ((big fat hugs))
Wolf - Can you explain what you mean by "At some point he will be beyond competency and the truth of who is looking out for whom will be clearer legally. When the medical professionals are on the same page as you are about what has and hasn't been happening such as aggressive behaviours they will not have to be addressed then when decisions about what is best to be done are being made". When I recently toured the local NH, I was told that they could not accept anybody who didn't want to be there. Well, my dh will NEVER want to leave me/here. I wonder how placement will ever be accomplished if he can still drive that bus??
Good to see you back on the board. I hope that your vacation and family visit brought you rest, relaxation, and fun! Time away and returning is always bittersweet. May your week be filled with peace and joy
Mothert, very few people enter an ALF or NH willingly. Many are in such a shape that they cannot protest against the move, or it is obvious that they need to be there. In some cases the person will eventually agree to the move after being told by doctors and spouse it is necessary, this is happening in my case and was a big surprise. Some other cases medical guardianship is necessary. Different NH and ALFs seem to handle the cases of people unwilling to move in differently, so I suggest talking with people at different facilities. I spent a year with the same worries, we will see how things go in my life in two weeks.
Lulliebird's opening post was about how her husband is behaving. As the disease progresses it becomes much clearer about competency. Luliebird's husband as we all know will at some point be in a position to be declared incompetent without any serious doubt.
Whether his behaviours improve or not as that time passes, the legal realities will become clearer. Nursing homes won't take someone against their will who is competent or not proved incompetent more likely.
When the closest medical professional in Lulliebird's situation has noted his behaviours and his declining capability - the question of who holds the powers of attorney may come into play.
If Lulliebird has worked with them and discussed these issues then she should be in a position to have their support when decisions to test competency or a nursing home are being considered.
My wife is in a locked up ward here. Most AD patients are is my understanding.
You are correct. My opening post was a vent on the my husband's behavioral issues.
My husband has been declared by his doctor, in writing, that he is physically and mentally incompetent. I am his durable power of attorney in health care. I have the deciding factor of making his medical decisions. Without durable power of attorney, guardianship or being declared incompetent I would have absolutely no input in my husband's future placement.
I have toured a couple of ALF's and have discussed with them placement/cost. My goal is to keep husband in our home as long as possible. With the benefit of medications I pray this will extend my "in-home" caregiving. Sadly medications can only modify behavioral problems so if and when the medications can no longer be effective I (as Paul) will have to move forward. As caregivers we do the best we can, but we also must remember not to neglect our own health or safety.
I think most of us here have varying dementias to contend with. even some members here had hard core FTD cases and eventually medications were found to alleviate and modifty behavior issues. it does take a lot of work and tolerance to find those meds and a dr who is willing to make the call to try various or combo drugs. if they are unruly and unable to stay compliant for us at home without proper meds, how do we think a facility will control them? the facitilties have concerns for other residents and liablitiy issues and cant tolerate an aggressive or danger for others. so to me, it appears the choice is to either find the meds for use at home or the facility will not accept them long without them calm and non agitated. and if nothing else works then something more sedating may be the alternate drug for a facility dr. **ask marilynmd Emily or some of the others !_) meds that can be more sedating may not have to be used for long if they are the only thing that will work. as many here can attest it took a long time and good drs to find that special combo that works.
I would just like to add to divvis comments about our spouses with dementia who need meds to control behaviors. My DH is difficult at home with agitation and occasional aggressiveness now and it is a constant struggle to find a facility or dr to prescribe the right combo of meds so he is calm at home. I absolutely KNOW if he were in a facility (3 weeks in NH rehab in dementia wing in July 2013) they will prescribe (overprescribe) meds so he is compliant with the facility staff and not "a danger to himself or others". They sent him home with a significant increase in meds which make him drowsy, dull and he sleeps a lot during the day. He is significantly changed from the person who was admitted on June 13th for rehab. What I never understood was if they would over medicate him in a facility, why the drs wouldn't prescribe the same amount of meds to make him compliant at home so he could be cared for in his home.
While in rehab I was threatened by the geriatrician that if they couldn't find the right meds to control him he would be sent to a psychiatric hospital and it was likely a facility (NH or ALF) would never accept him for long term care. Unfortunately those of us with a spouse who has difficult behaviors often are faced with few choices if there is no doctor who will work with us to find the right med combo.
divvi, You and several others have brought up a very valid point which I had overlooked . With this in mind, I am presented with new obstacles regarding future care. I can see that my husband could become one of the "hardcore" patients because bv frontal temporal dementia. This really decreases choices available for future placement. My long term goal is to provide care in the home however, sometimes unforeseen events and obstacles occur and we need a "backup" plan. With this in mind, it makes me more aware of the importance of being very proactive and verbal regarding behavioral issues. Thanks!
LFL, ((hugs)) you have had your plate full and my heart goes out to you. I am confused why the NH rehab has the meds to make your husband compliant, but you do not have the same meds available at home, This is so unfair! WHY? Oh my gosh, the thought of a psychiatric hospital makes my blood run cold. Yes, you and divvi have now made me aware that we have few, if any, choices. I know that your location makes it even more difficult in finding a physician who will be your advocate. LFL, You are doing a terrific job. You are a wonderful caretaker. More ((hugs))
Wolf, thanks for your concern! Yes, I am a good little venter! :)