I have our first respite stay booked for January 17 for 5 days. for me I know I need the time but I am anguishing over the process of taking her there. How to do it, tell her what is happening or not? The other day she asked me what was wrong with her and so we had a good discussion and a good cry. She said just put me somewhere. Well that was the other day a day in which we could have a discussion that was somewhat understood. Other days trying to get her to understand anything is a problem. I know everyone and every situation is different but any tips, What has worked for others. If possible I am thinking of getting somebody else to come with us.
Staff are telling me not to tell him about visitors and outings until the time they are to happen. My guy will stress from the time he is told until it happens. It is just to much information to upsetting. If you are unsure of what to do, speak to the staff where she will be going as they deal with this regularly. Each dementia person is different and things affect them differently. For me I would wait until that morning. Others here will give you some good tips.
I think it depends on how able she is to understand what is going on. It sounds like she has some awareness of what is happening. If you don't tell her in advance, will she be too confused when you leave her there and think this is a permanent placement? I don't know. Also, will she expect you to give her a reason for placing her there for 5 days or is her condition so advanced that she would not expect a reason?
I look forward to more comments on the subject of respite, as I just found out his new health insurance will pay for it. I have not had a break in four years and couldn't afford the $150 a day fee. I know he will be one that fights them every second of the day and will be yelling and cussing at me from start to finish. He did just start seroquel and it is calming a lot of his aggression but I think a nursing home respite will unglue him. He is very aware of my being close by and wants it that way. My fear is that the worry he would cause me would take away the peace of respite. Any suggestions?
When I first put my husband in respite, I was beyond needing a break and basically visited the place once. The owners came to my house to get a sense of where he was in his dementia. I did not talk about it but basically told him i was needing a break and dropped him off. By that time I had stopped trying to get him to understand because I realized it was a waste of my energy. In the middle of my vacation, they called as he was urinating inappropriately and they thought it was a urinary tract infection. That was a real downer as I had to call my son to take him to,the doctor and it basically put a dark cloud on my vacation. It was a behavioral issue and was not a UTI. This was a problem he had until the very end. When placing them in respite, make sure the facility is aware of any behaviors that are odd or,out of,the ordinary so you do not get called in the middle of your respite time. When I placed him in respite I did not know he was doing this and when I returned I realized it was time to place him.
Thanks for the comments I am going to wait until just before we go to tell her. Junebug we live in Bc so can get respite for $30 a day though health athourity but only in certain facilities. I chose one that is an hour and a half away as it is billed as a respite hotel visited it and although still a facility very nice. I too am concerned about what the reaction will be But feel she will accept it grudgingly and that the whole process may be harder on me than on her. I have made up my mind that placement is coming sooner than later and this is the first step. Only 5 days and going to use the time to try and solidly the direction I am going to take. I have booked another 12 days in later february where I hope, like CO2, will take that time to do something for me. Have to get through this first respite visit and gage where to from there.
I know the facility I want my dw to be in but again in bc if you go through health authority for assistance you have to take the first available bed so do not get to choose the facility. I will probably end up placing her there and pay the shot hoping that at some point can get subsidized difference would be about $3000 a month.
Was given a comment once that placement for some people is a relief as they no longer have any expectations to live up to, no stress, nobody to try and keep up to. I know at times how frustrated and angry my dw becomes when she realizes she cannot do things. She always wants to help but not much she can actually do.
Rona I'm in BC too, up in the Cariboo. I got to pick where hubby got respite. Either up where I was or in Kamloops or Williams Lake. Are you down in the coast?
As far as payment I pay 80% of his taxable income. Which means his Veterans pension doesn't count. Plus if I were to apply for involuntary separation through federal govt I would pay even less. For me being under 60 it is better to leave it the way it is because veterans affairs is reimbursing me 45% of what I am paying. If you get her into a nurseling home attached to a hospital their pharmacy supply the meds he needs at no charge.
I also didn't tell him about going into respite until the day he was going. I made the mistake of telling him the night before the first time and what an awful night for both if us....no sleep, pacing, anger. Then the next day he refused to go until while talking to the community nurse she said to tell him if he didn't go she would have the police come and escort him in...he was aggressive and they were concerned for my safety because he was escalating.
So from then on I pack his bag the morning he was to go in and whisk him over and made it happen quickly. It was better for both of us.
Rona, placement whether it be respite or assisted living or whatever does change things. That being said yes you are relieved of the 24/7 care but the responsibility is still there. It presents other challenges as you now become the chief advocate for his or her care. It means meetings and more meetings with staff, nurses, care providers and unfamiliar doctors many of whom do not have your loved ones best interest in mind simply because of the sheer number of patients that they have. For me respite and ultimate placement were a help as I knew I could not keep him at home. My best advice is to advocate for admission to hospice as soon as you can especially if you see a rapid decline, loss of weight or anything that seems different. My husbands care got a whole lot better once he was on hospice but I had to fight to get it. Thankfully I had a wonderful nurse who agreed with me and bent over backwards to,get him on.
Thanks CO2 I am aware, over the last five years or so we placed my mil and then my fil, as my dw was well on her way with alz, unknown to us, I basicly was dealing with most of it. Both gone now. Many have suggested getting live in help but we don't really have a proper set up for that could do renovations but then I think by the time they are done who knows where we will be at. Plus it just does not feel right to me having somebody else in the house full time.
I am not taking placement lightly and am holding on but I know it is just around the corner for both our sakes. It has been close to 10 years now dealing with caring for others, don't get me wrong we have had a good life but this has always had a major impact on our life. I know what is involved with placement and know that I need to stay on top of her care. After diagnosis one of the first things Lisa said to me was "I am going find you another wife" and that she did not want to ruin my life? I use to get angry with her for that and I would tell her I was not going to abandon her. It was clear that when it was time I needed to place her. Well it is time.
You bet there is guilt I will not leave her but I am 65 now and hope that I still have lots of life left in me and it is time that I started taking some of that time for myself. Does that sound selfish?
"but I am 65 now and hope that I still have lots of life left in me and it is time that I started taking some of that time for myself. Does that sound selfish?"
I am 63 and hope the same thing. If it is selfish, then I guess both of us and many others here are.
I am 66 and have been hoping that since before he died, and now that he is gone, I still hope for it. If that is selfish, tough beans. If it is selfish, then, as Charlotte said, many of us here are being very selfish together. lol
Ok none of us are selfish I think just always looking after somebody else somehow can make us feel that something is wrong if we start thinking of ourselves first. A good piece of advice I got when I retired, I asked one of my mentors what do you do with your time and he said to me, you know when we are working we are always so busy we feel we always have to be accomplishing something. when we stop we have realize it's ok to just sit and read the paper we don't always have to be accomplishing anything it is ok to relax and do what you feel like doing. Hard for many to do.
I think the same here it is ok to think about ourselves. There is nothing wrong with that. Some people in this world only thing about themselves we have been lucky in that we have had someone we have loved and have been able to care for. Now we have nothing to feel guilty about if we start thinking about ourselves we have done the best we could. Words of wisdom now The trick is to put them into practise not just speak them. Good luck to all of us.
I agree with you Rona, it is difficult to focus on ourselves. Caregiving extracts so much from us that sometimes I feel like I have actually forgotten how to focus on myself. Although it has been almost 8 months, I still feel like I do not know myself yet as a single person. It is a journey and not easy for sure. Happy holidays to all and may 2016 bring us all health, some measure of happiness, and the time to do things we really want to do. God bless.