So upsetting, last time I visited Dh he cried as soon as he saw me and said he wanted to come home...what do I say to him?
...He had an incident a few days prior, I was told 4 days after the event. Where that DH supposidly took someone's shoe from their room, one carer tackled him over it, a shuffle broke out, the shoe was damaged and Dh kicked the male carer up near the groin causing a laceration.....no way do I believe this. DH couldn't kick that far up, he would have lost his balance and fell backwards. So now they want to assess his meds again. I was so angry that I was not told straight away when it happened, and voiced my opinion on that and that the carer did not handle the situation properly. He should have let Dh have the shoe and taken it back later when things settled down and DH distracted... ..But what do I say to him, when he says he wants to come home.
so sorry julia. things like this do happen in facilities when we least expect it. i would make sure to file an incident report myself with the director there. and make sure its filed and you have a copy. express your concerns and that you were not notified in a timely manner. keep records of incidences of this sort if anything happens again and hopefully you can stay on top of any medications changes from here on out as well. its never easy making choices for our loved ones, who are in the hands of strangers. maybe you can try to spend a bit more time overseeing him and visiting a tad more to ease his fears and distress over coming home. i doubt it would help much and possibly just stir him up more if you return him later after a home visit. i think we make these difficult decisions knowing our own individual spouses and how our special circumstances are at the time. i think a thorough workup of how they handle another situation like this in the future would be prudent. divvi
Julia, When my DH was placed, they held "Care Conferences" at cerain intervals, but I could ask for one at any time. This would be a place to let all Depts. acting with your DH know your expectations ---timely reports of incidents (eg). This would also give you an overiew of each one's role in his care. Divvi said a lot of what I was going to. One thing I did, was tell my DH, "We have to do what the Dr.says. You need lots of testing, so you need to be here." I varied the words but always the same message. I made sure the staff and Dr. knew what I was telling him. When he finally asked the Dr., she told him he needed lots of tests because of his breathing trouble, so he had to be there. With that he acepted that he couldn't come home, but it was because the Dr. said so.
This must be so heartbreaking for you. I’m sorry you have to go through this. I hope you are not entertaining any guilt – none of this is your fault – you are just doing your best in lousy circumstances.
Sometimes there are things that we just can’t fix. This may be one of them.
I guess you need to try and distract him, maybe have a plan to distract him next time you visit…or maybe you’ll get lucky and he will have forgotten the incident. I don’t know what stage he is – is it possible when he wants to “go home” he is not even referring to your home, but the home of his childhood? If that’s not the case now, it may very well be someday.
I would definitely request a meeting about the shoe incident. It seems to me the caregivers are not very well trained if they are tackling Alzheimers patients over a little pilfering – which happens often.
Julia this must be so heartbreaking, and just when you were sort of getting used to it. Don't our hearts just BREAK for OUR MATE, I have never had children but I would think it would be kind of like hearing your child cry to come home. Oh just another sad thing that you must get through.
I just left from my visit with Dado, I wait until he has to pee, and when the caregiver takes him, sneak away. Otherwise he yells and yells.
Though I feel he is in a great situation, it could not be any better really, I am now going through the separation part, grief, and sad for ME missing him.
I'm so sorry Julia, and like the others who have shared their perspectives, I'm right there with you. The suggestion about waiting for a distraction to 'sneak out' is working for me. My DH went into rehab/nursing facility before Christmas after a fall, and I've decided to leave him there. He has acclimated better than I thought, and the aides/nurses really do watch out for him. My heart breaks, and I'm constantly second guessing, but know that it is the right thing. My husband really can't speak but makes it known that he doesn't want me to go....but the last two visits, it's been easier. Coco: I'm going through the separation, grief and missing him too. Hugs to you Julia, Coco and others who are posting about placement right now.
Thank you so much everyone. Divvi...I am keeping a record of all things that happen there, it's all on their file too, everything gets noted on their computer after each shift / take overs, for the next shift of carers to read. I made it clear that it should / could have been handled better than that and more training needs to be in place for that. I have had him home a couple of times for a few hours and as expected it is hard to get him to go back without little fiblets like, "we have a Dr's App" and back we go.
Carosi2*...I've tried telling him he's in there for better care than I could give him, that the Dr will be in that night to see him. I don't know if he really understands all that, but I'm running out of excuse to tell him, he knows that's not home.
Mary22033...yes guilt is setting in again, I feel like I've locked him up just like when he was in abusive care as a young boy. he has lost so many shoes, 5 pr slippers, he was most likely looking for his own, I've now bought him 2 pr grey shoes the same, if one goes missing he will still have a pair...no one else there has grey shoes...arghhh!
Coco...my heart breaks for you too. Yes, just as I thought things might settle a bit now, there's always something cropping up. Separation guilt and sadness is so hard to shake off, I still struggle with it every day, 6 months on, it feels like 6 years. hugs back to you.
Adagio..thank you. I now get the carer to come and pretend I have a phone call in the office to take, "don't be long he says"...breaks my heart sneaking off like that. I pray the separation gets easier for us all...
Today he saw me coming up the path through the window, he started tapping on the glass for me to come in. " I missed you " he said, and he's always telling me to watch out for the others, he doesn't trust them..
Edited to say...i don't know what stage he would be at...I'm thinking stage 6. Hugs to us all...this is so hard....♥
I visited my local Alz office yesterday and she told me the biggest need they have when they are placed is just reassurance that they are loved and that we will be with them through this experience. Trying to convince them of things will never work she said. For me convincing is very hard not to do because we all want to acknowledge what we think is best for them. But because of the disease, they do not understand.
CO2 that is what I tell him everytime, I WILL NEVER LEAVE YOU< but I cannot care for you it is too much for me. I will always be there for you. Tears roll down his face and he does not argue. However when he sees me getting ready to leave he gets REALLY MAD and yells. Hence the sneaking out.
I was thinking on this some more, our guilt and pain over placement. Julia, I know you love him so much, and it hurts to see this, yet, you yourself cannot do it. We just have to love them up as much as we can, and somehow find a place in ourselves that KNOWS this is how it HAS to be. In our case, I believe he knows this.
Now that we are settling., the feelings of missing the old Dado, our marriage, our travels, are all coming up. I am letting it hurt, and wondering if I will be able to emotionally divorce, just a bit . Soon.
CO2..Coco....I'm reassuring him all the time, telling him I love him, he's there for the special care he gets there, that I can't give him... some days he seems to get it, some days not.
Yesterday he was very agitated at the lunch table. He gets so confused trying to say something.....bangs his hands on the table making such a noise everyone looks around. I'm worried they will up his meds again. Also getting more paranoid again, the knife is his he said, I had to look after it for him.
How do you emotionally divorce him, try not to feel anything, when you love him so much and can feel his pain, frustrations....
Coco, you have come so far, looking back at what you went through, you can be so proud of your self. You survived all that... I see you getting stronger with each step of this journey...I thought I had control over my fears and feelings, but i don't know so much now..
That agitation is really upsetting Julia. If I may, relate a little advice , something I am sure you already know. Today we had the Nurse and Social worker visit Dado in his new home, and they are now his team again yaaayyy I love them.
Dado has been doing this awful yelling thing lately. When we were having our meeting, I put his glasses on him, and they were a bit crooked. He YELLED NO!!! And things like that, when I accidentely even very softly bang his foot he lets out this really angry yell.
Then the other day, because he did not want me to leave., he said I don't like you. Also, the caregiver there says he does that yelling with her sometimes, out of the blue for no reason.
Of course, it hurts my feelings and I just hate it when he does it. So, the VA visiting nurse today, who sees many many dementia cases, said Patty you just have to accept that it has NOTHING to do with anyone, think of his brain like a piece of Swiss cheese and sometimes he just hits one of the "holes" and loses it.
It is so awful to see our mate in this state, yet, remember, we don't really know what is going on in there. I know Julia, it is so so hard to distance ourselves. But you know what....all those things we do, tell them we love them, visit them, and truly love them , is ALL WE CAN DO.
We will be ok, make sure we stick together here and let it out. I especially like it when I am really sad in the middle of the night, and there is always someone that will read and write back.
To ALL of you, I personally will make more of an effort to respond a bit more, now that I am healing a bit. I know how much it means.
Thank you so much Coco for your comforting post. When I visit and Dh starts getting agitated and losing it, I will remember this post of their brain being like swiss cheese. I often see him staring out to nothing,I ask what's he thinking, he says he doesn't know . I know it's not like him to be like this, and he's not agitated at me personally.
I have not been here for a few days. When I got halfway through this thread I started to cry. I can feel everyones pain. My DH was in the Veterans Home 10 minutes away. Then January 4th they transferred him to a facility an hour & a half away. His agitation & aggression was becoming a big problem & he was transferred to this other facility for an evaluation & to adjust his meds. I did not go to see him because I had that upper respiratory virus that was going around & I also thought that maybe it would be better if I stayed away so that I wouldn't be a distraction to him. I've been in contact with his neuropychiatrist & he told me that he is still trying to work out the right meds. I finally went to see him yesterday & my daughter & son-in-law went with me. When I saw him he was sleeping in a chair. They had him pretty sedated (which I understand). He looked so helpless & it just broke my heart. I bent down & gently woke him up. When he looked at me I could tell that he was confused. He did recognize me & when our daughter spoke to him I think he recognized her too. The doctor said that he might be able to come back to the Veterans Home next week. I didn't realize how much I missed him until I saw him. To be truthful I just tried not to think about him because it just was too painful, but seeing him yesterday & seeing how much he has declined just broke my heart. So believe me, even thought we don't have exactly the same situations I KNOW your pain & my heart goes out to all of you.
ElaineH I am so glad to see you back, and hope for a quick healing for that darn virus.
I am so sorry for your sore heart too, and I think in some ways, are situations ARE exactly the same. We have mates that we love, that are losing their abilities, and there is not a darn thing we can do about it. It just tears and rips us apart when we see them suffering.
It will be nice when they can get him back to the VA home. Big aloha to you ElaineH.
ElaineH...lovely to see you back. I think we have been in about the same stage in this journey, and it doesn't get any easier as I hoped it would. My heart goes out to you too. Some days I think I won't get through another day, but as hard as it is we must go on. I hope they can get your Dh's meds settled so he can be closer to you Coco has been a tower of strength....after everything she's been through we now draw some strength from her...♥
Julia, You asked how to emotionally divorce yourself. Trust me this is not easy but my theory is that for me it was a tad easier because my marriage was not the best and although we stayed married, I sort of went my own way many years ago. I think it is harder if the marriage was great and the couple did a lot of things together. I had to get past all the memories and regrets of things that will never happen. And I had to forgive him for all that went on in the past as well as forgive myself. That was the most difficult I think. I tell myself and him that I am doing the best I can but deep down I know it is not very good which is why I am going Monday for an assessment at the assisted living facility to see if they will take him and if they can meet his needs. I have horrible guilt because in many respects he is not that bad or certainly not as bad as some, but I do feel deep inside that he needs more than what I can provide.
My husband is very placid in his mood but I know this can change very quickly. Also I believe once I get him placed, more of his behaviors and symptoms will come out as being at home is masking many of them because of the familiarity. the Alz office gave me some good reading material on what to expect before, during and after placement. I know this will be a huge change and that even after the placement, it is still not over. But it will be easier as I will not have the 24/7 care that I have now and will be more free to come and go without having to figure out who will care for him. It is another step on the journey. This is an amazing website and I have learned so much from others going through it.
CO2... I hope your placement goes smoothly..looking back now, my dh wasn't that bad either, he just went down so much quicker when he went into placement, that's why I feel guilty, like I locked him away.
We had a beautiful 50 +year marriage, we did everything together....tho being from European background he was a little posessive, but he always put me and the kids first before himself. Even now when I visit he's watching out for me....watch your bag, he says. Not having to look after him 24/7 does free me up a bit, tho still hard to emtionally divorce myself from him.. I sit with him, he falls asleep in the chair,and i can't help but cry at seeing him like this...tears flow for what we had.
I have great supportive friends, a patchwork group and a embroidery group. Son who lives nearby who is getting married soon to a lovely lady who has just come over from brazil...she has a young son, and is delightful and has brought some happiness and joy back to the family. I will be helping her alot, which will take my mind off thing, keep me busy.
yes this is an amazing website, I too have learned so much here...I read alot here. it helps me get through knowing you are out there with me..
CO2 - I agree with you that those of us that did not have good marriages have an easier time 'divorcing' ourselves. Even though we did almost everything together, we still did not have a good marriage. We were just two people with similar likes that had no other friends so had only each other. He was always jealous of me having a friend unless there was a husband for him to be friends with. We had other couples we had casual friendships with, but any close ones always ended bad.