Frank's words haunt me. I am afraid that I will drop the baton long before the marathon ends. I find that my spirit is flagging. I am tired of being on high alert when I take Gord anywhere. I am tired of watching for inappropriate behaviour, flashes of anger, inconsolable crying, wandering. I am tired of hours of agitation that include a constant barrage of requests in a language only he understands. I see the torment in his face and I know that mine mirrors his. I am tired of walking on eggshells for fear of causing anger and a possible slap, punch or kick. I am tired of cringing when I think these things might be coming my way. I am tired and thinking of placement. Then I wonder how I can do that.
Jang...you have the strength and resources to get through this.... get rid of the flag.Forget the baton. If you drop it, heck you really do not need it...No one checks to see if you still have the baton. I only use it to hit myself on my head. Stop walking on eggshells...buy the kind like eggbeaters...eggshells are only thrown out anyway. Concentrate on only 1 second at a time....do not anticipate bad behavior...just expect the unexpected. do not stop to ask for directions....be a man...:) Jang..you have the most fantastic opportunity ever..the total care of your loved one. It is a responsibility that few ever get a chance to experience. Embrace it with your whole heart and soul, and you will find it easier to handle this disease. and if all else fails, just laugh.....that cures everything!
Phranque...today with my DH I've been feeling like pulling my hair out and your words have set me on the better course and saved my day...thanks for your posts.
ok heck drop it, kick it and step on it.....so what.....the job you have is huge and your doing an outstanding job because you are doing. I know it's upsetting to feel like something my give at any time, just try to limit the chances by controlling what you can, and when you can't, you can't. Nothing is going to be perfect ever. :)
I have to make my comment also, I am always different than others on the board and guess I am this time, Yes, like has been stated Jang you do have the strength and resources to get through this, however you have been on this journey almost 10 years, being a a Saint is not required, you can also be a perfect caregiver for your loved one and balance it with a life for you also. Time marches on and our life marches on with it. Those who are older caregivers such as us need to also take care of ourselves so that we can continue to be there for our loved one. Being in constant stress is not a good thing for either of you.
As you know I took care of my husband 11 years at home, and had to make the decision to place him, no it is not easy with placement but I can now at least make a Doctor appointment for myself without worry of who will care for him the two hours I might be gone. I can now not worry if I become very sick and unable to care for him who will step in for me, I know he is safe.
I do believe there comes a time if the disease goes on and on that a person needs to be under a different type of stress for a while, be a caregiver and yet have a life. By having a life I do not mean going about your merry way, I go to the Nursing home every day of my life, I see to his needs, I sit with him, I advocate for him etc. but I do have to say that just knowing I am not having to do the physical work of changing him etc all day long and through the night has lifted my spirits. I cry but not as often as when he was home, I know that panic that Jang feels when not knowing what will happen next, not being able to leave the house for even a cup of coffee unless you have someone to sit with them, it has gone on so long it felt normal until I was no longer completely isolated.
Being a total care giver is not required in order to be a good caregiver.
jang--do what needs doing to keep you and he safe and healthy. Meds can help greatly with behavioral issues. Bring in help as soon as you can--the sooner he gets used to helpers---even just for housework, the easier it will be when you need helpers for his care. I have been my DH's Caregiver since March, 1988 (not a typeO), at first with Mental Illness and the Dx Aug.2006 with VaD. Our Daughter lives in CA and his family interfers (no help there). At the Discharge Conference the Drs.were talking Placement. I told them I couldn't do his care alone anymore but with help I could and believed the best place for him was at home. One thing I had learned early on was that I actively cared for him from awakening in the morning until when I went to bed. During the nightshift he's in God's hands. Nothing is going to happen in that time that can't happen when I'm on duty. It's been 5 years since Dx (he was entering Stage 5 then). He's no longer reliably compliant with not wandering, and his obsession with smoking is manifesting with a faster steady decline with frequent TIA's. I am his Guardian and with concurrence of his Neuro-Psych Dr. I am seeking Placement. He will then be in a safe environment and I can still advocate his care. As Caregivers we have to do the best we can and it will be good enough. Even Phranque will agree, I am sure, no one can do this from start to finish alone.
Thanks Jane. We know each other well and you have been an amazing caregiver and are a fierce advocate for your husband now that he has been placed. Carosi...I do get 10 hours a week so that I can run free. As Jane knows, that is one of the biggest things for me. The panic that comes with knowing that no matter what we may need, I can't leave unless I have help.
I wonder if we maybe need to give ourselves permission to let go when we feel we can no longer cope with the way things are. Some of us are remarkable like Phranque and Jane. She carried on well past the time that I will. Some of us are not so remarkable. Our ability to cope will end before God calls our loved ones home. Maybe those of us who are not so remarkable need to decide that that is OK too.
Jang - when we vow 'in sickness and in health,' it does not mean we have to do it all by ourselves 24/7 for 5, 10, 20 yrs. If you have help or need placement, that is still fulfilling your vows. We are all different as to our finances, age, physical and emotional health. You have to be concerned with caring for Jan--and that is so hard because our LO's are so demending and it's unending. But if something happens to Jan (and it is not uncommon that something happens to the CG), then who will take care of your LO? I will not be the first nor the last to tell you that after 10 yrs of caring for my DH, my body simply said 'enough.' I was also aging myself as he got worse. My children said, 'please Mom, we don't want to lose you to the same disease.' and so, finally, I had no choice but to place him. And what happened? I cried and cried, had second and fifth & 17th thoughts, I thought about bringing him home, and I also realized that I was getting phone calls from the facility, decisions had to be made, etc, and things were still happening and I was still the in-charge CG, but finally I was able to get some sleep, to take a long, warm bath w/out interruption, to just be quiet and not have to jump physically and mentally all the time. I hope you realize that you are not alone, that we all feel the personal loss and pain, let the people here support you, but only you can care for Jan. She's worth it.
Thanks Betty. I take him for respite in October and I am already dreading the thought of abandoning him there for 12 days. On the other hand, the thought of doing the things you mention and going for a walk whenever I want just fill me with such joy.
Jang...you are not abandoning him for 12 days. You are helping him by keeping yourself in shape and able to continue on the journey....Heck, even God rested on the seventh day, after all he did for the previous six./
jang---Respite is not abandoning him. Driving him into another area and dropping him off; or out i the country; or leaving him home alone for an extended period--that's abandoning. Respite is placing him into the hands of trained caregivers to take care of him in a safe environment so you can recharge. He may not be happy--especioially at first, but he'll befine, and he'll get over it--just like kids get over being dropped off to Daycare. If you don't take care of you, who will take care of him? The marriage partnership doesn't mean relingishing your self total to your spouse's wants and needs. A partnership means enhancing each other.
"you have the most fantastic opportunity ever..the total care of your loved one. It is a responsibility that few ever get a chance to experience. Embrace it with your whole heart and soul, and you will find it easier to handle this disease. and if all else fails, just laugh" - Phranque. Thank you for these words of wisdom. I'm proud and happy to be a caregiver now.
My sister came for a week's visit last Wednesday; she leaves Tuesday and says she can see a big difference in hb in the time she's been here - down escalator is moving more rapidly.
Wee! Im so glad for this Opportunity. Im going to try to sleep on that and hopefully it will take. Ive been feeling kind of sorry for myself today. Havent had a lot to laugh about. But thanks for your thoughts, maybe Ill get there another day.
Frank has what many of us only dream we could have, the saying "I love to dream of what might be" Frank has children who come in and do shifts for him, he has professional Doctor friends who offer and give their help. Those things are what I would dream of, I also saw where a couple won the lottery and I thought to myself oh how I wish to have the money to hire help and bring him home, but then many of us do not have the support that Frank has and the loved one cannot get the care they need when they reach a certain point without that help, the saying it takes a village and it really does with this.
So as others have posted, caregivers have many faces and many different situations etc., I feel that no matter what, any caregiver that has walked this journey and cared for a loved with this disease whether the end happens at home or in a facility, that caregiver is the best caregiver anyone could be.