Well, I made my usual biweekly visit to the NH on Sunday. I no longer feel any sense of peace or pleasure during or after the visits. Neither am I sad or mad after the visits. It is just something I have to do whether I like it or not. Why, I feel like I have to visit, I can't explain. Nobody ever pressures me to go. I think it has been going on so long (11yrs?) that I have just used up all my ALZ emotions. Hope that doesn't sound too mean and selfish because I am not usually a mean selfish person.
CO2 and Lorrie my thoughts and prayers are with you during this leg of your long journey. CO2 I hope hospice is helping to get your husband calm. Stay strong if possible and take good care of you.
You are not selfish or mean. Eleven years of grieving has just worn you out.
I cannot imagine going through this torture that long!
Last week I thought my husband was going to pass the night he ran a fever and wouldn't eat or drink. Now, the roller coaster ride continues. Being fed puréed food and eating some but coughing a lot. It is getting harder and harder to See him. It breaks my heart to look at him wasting away mentally and physically.
I am feeling like I wish it would end. I, too, feel uncomfortable with these feelings.
Lorrie, Thanks for understanding. Your feeling of wishing it would end soon is the same feeling that lots of us (me included) also have. Release from such a demented mind would be a blessing. From beginning to the end this disease is torture. We watch their mind fading away 'til there is nothing left and it is sad for us caregivers. We'll just hang in there one day a time. Take care friend.
I am in the same place. My husband is wasting away daily and it seems to me that he declined so fast. I still haven't gotten towards any acceptance of his impending death - at all. I know it is selfish of me, but I just don't want him to go. I'm such a baby - as I've said before, I'm not grown up enough to do this. To top it off, our favorite nurse at the LTC center resigned. There won't be a permanent replacement until April 1, and I only hope he can last that long. I'm so sad and lost. My therapist asks if I think about suicide, and I have to say I do. Life without him is simply unimaginable. It is torture. Hopefully just for me, and not so much for him.
Joni1957, these are difficult times and watching your beloved husband decline is very, very hard. Be kind to yourself. You're stronger than you think and will make it through this nightmare.
AliM, Joni and Lorrie and all, I am sending you all the support I can. It seems like we are all at about the same place in our journey. Hubby has been on hospice for a week. I feel better less burdened. I doubt that he sees much difference. They got him a new bed with an air mattress. The aid comes twice a week. The nurse called and they think the Atarax is calming him although the inappropriate urinating continues and they will not let him use the restrictive clothing because it "restricts" and they will not do that. He is still walking and now they say the sun downing is getting bad. He fights the aid and it starts about 6 in the evening. The nurse says there is no pill for that or at least she does not feel it necessary to give him anything. He is becoming frightfully thin. Now weighs 117 pounds. He was never a big man but he looks like a skeleton. AliM, I feel much the same as younregarding the visits. No one ever pressures me to go but I feel I must. I too visit twice a week. I just thank the Good Lord for all of you.
Thank you, everyone, for your love and support. Hospice is telling me that my husband has begun the process of "transitioning". For 14 years I have spent my every waking moment trying to keep him as healthy as possible, trying to keep him from getting worse, trying to keep him alive. This is torturous giving it all up, and just seeing to it that he is comfortable. I want him comfortable, but I also want him alive. I cannot imagine the world without him in it. I have to believe to some degree that God will give me what I need to get through it. I know I would be at a complete loss without all of you here. Joni
We have gotten this far, we will see it through. All of us do. There is nothing else we can do. I'm in the same place as all of you, although my husband isn't on hospice. I'm getting ready to visit him now. I don't know why I'm putting it off. I really don't mind going to the nursing home. Everyone there knows me. We call each other by our first names,all the aides, nurses and directors. And the residents' faces light up when they see me, and mine lights up too. I suppose the main reason I hesitate is because I hate, simply hate, seeing my smart, personable,lovable husband changed into someone I don't know. I am kind to him and he tells me I'm beautiful, even though he doesn't open his eyes to look at me. Sometimes he knows who I am but most times he doesn't. I tease him and say, How do you know I'm beautiful if you don't look at me? He says he just knows. I think somewhere inside him he recognizes my voice.
Well, Im going now. I'll be getting there at dInnertime and will end up feeding him rather than letting one of the aides do it. But I like helping him. We cant really have a conversation anyway. I just ask him questions about when he was very young 'cause that's where he is right now.
Bev, I need a little dose of your good attitude. My DH is not in hospice care now, but was for six months over two years ago. DH does not talk at all. He just walks, eats and has this blank stare. I talk to some of the non ALZ residents while sitting in the living room area. DH sits calmly on the sofa for two or three hours. I feed him supper, put him back in his merrywalker and he goes nonstop 'til bedtime. If he reacted in any manner I might not mind going to visit. He almost seems like a stranger to me although we have been married 49 years. I just feel relieved when I leave the facility. March 29th will be 4 years since placement. I do believe I have worn out my welcome at the NH. I'll just keep on keeping on 'til it ends for one of us. What a life!
Joni1957 hang in here with us. Everything will work out according to the plan. There is a whole heap of understanding on this blog. Thanks to all of you.
I haven't posted for a long time. My world took a wild turn in Oct. I basically had a breakdown spent forty days in a hospital and then had back surgery in Dec. My DH was admitted to a nursing home 150 miles from me. I try to go see him as often as I can but I'm still very unstable on my feet.(very bad balance issues) I'm living alone for the first time in my life.( straight from my parents home to marriage 48 years ago.) It is going better than I thought it would. I have many friends and family here. DH went downhill very fast. He doesn't walk talks very little and can't feed himself. I'm in the same place many of you are not knowing how long this will go on. I just want to forget 20014.
mkayeb, Welcome back. Sure sounds like you have traveled down a rough road. I hope your health will continue to improve. Now that you are living alone enjoy the peace of sleeping and eating when you choose. It must be comforting to have friends and family near you. Best wishes for continuing on a path to wellness.
Today my dear husband seems to have one foot in the other world already. I could see it as soon as I walked in - the faces of the nurses and caregivers told me. He seems comfortable, and actually opened his eyes once, but I could tell he wasn't seeing me. I can't get through this.
Joni, don't be so hard on yourself. You would have said you can't do this all along but you are here. I must have said I can't do this dozens of times and meant it every time.
I also agree Alim that you must be stretched thin after all these years. There's nothing selfish about that truth.
I remember one day after she was in the NH about six months and I knew she was long unaware. I felt the deep need to talk to her and she was in a wheelchair at times to give her a break from her constant walking. I took her down the hall to where a couple of chairs and a window were and took her hand and started telling her how sorry I was and how much I loved her. And she wheeled away down the hall and into someone else's room. It took me a long time to get up and go back home that day. It's a hard road but as Vickie said we get through it.
Joni, I know your heart is hurting now so grieve as you must. One day you can look back and realize just how strong you were. We are here for you.
My 6:30AM wake up call came from the NH today. DH had turned his merrywalker over and has two cracked ribs. The mobile xray unit came to the facility so no transporting. Thank goodness for that. He ate all of his meals and all vital signs are normal. When he attempts to get up he yells and lays back down. I know it is painful. 5mg of oxycodone was prescribed for the pain. I came home at 7:30PM A long day on ALZ hall for me!
I got that call too on Thursday, not at 6:30 am but at 3:15 pm. I was on my way to the grocery store when the nurse called to tell me he had fallen, that he had lifted the dining room table and it turned over and he was on the floor on his back. They had to lift him off the floor with a lift. She told me the protocol is to send him to the hospital to get checked out. I begged her not to send him to the hospital, that I was coming right over. Fortunately, he is about 5 minutes away and I got there quickly. They had the director of nurses looking at his chart, as well as the director of the unit. His aide was crying, not in front of me but I could just see she had tears in her eyes from previous crying. This happened at the time of shift change but someone should have been watching him. He was lying in bed in his room and I asked him if he hurt anywhere. He said he didn't think so but he was scared. I asked him what he was scared of and he said, I'm scared I'm going to die."
It turns out when the director of nurses checked the cameras in the dining room that he got up out of his wheelchair, turned around and was probably disoriented and sat on the edge of the table (his legs are weak). The table tipped over and he fell on his back. So, he didn't deliberately lift up the table. I'm so glad he told me this. They had a big meeting the next day and must have been read "the riot act." He probably had to go to the bathroom and no one noticed him.
I thought the stress of having him at home was bad; this is just as bad, if not worse.
Bev, I understand what you are going through. I was just sent a notice in the mail that I need to attend another care plan meeting. Since I just had one a month ago, and they wanted me to move him then, I am thinking this will be more of the same since they normally only have meetings quarterly. My husband is still walking and is falling and they do not know what to do. They have bed alarms and alarms on his Broda chair but they will not restrict him in any way, which I do understand. He has been at the LTC family since mid Feb and has fallen 3 times. they take him to the hospital if they hit their head. I think it is the law at least in my state. He is on Hospice so I am calling the hospice social worker tomorrow and see if she can attend the meeting with me along with one of my sons. They want me to move him to their behavioral unit which has very bad reviews and something I do not want to do. Most of the people where he is are not ambulatory and if they are they use walkers and walkers do not work for him since he "forgets" what to do with it. I agree the stress in having them placed can be pretty intense, but for me it is still better than having him home.
CO2, I do hope they don't want you to move him. I live with the dread that the next call from the NH will be that I need to find another place. Last Fall, after a head injury, they put a lightweight helmet on him unless he is in bed. I did not know if he would tolerate it but he has so far. No more head injuries. Now he just cracks his ribs! Taking someone with you is a good idea. Hopefully the hospice staff will help you with a plan that will allow you to leave him where he is. I agree with the intense stress and like you, I think having him at home was worse. Good luck CO2.
Bev, the same kind of thing happened with my husband. They put him in a lightweight wheelchair, he pushed back from the table, went flat on his back. I raised holy hell, as it wasn't even his wheelchair, and he shouldn't have been in it. For the first 2 months of his stay at the LTC, I felt like you - it was worse having him there than at home. It was hard for me to adjust and trust them, but it did work out okay. I wish you luck with your husband, and I hope you don't have to move him.
CO2, I hope all works out with your husband as well. It was very scary for me when they moved my husband to the behavioral unit, but luckily it worked out well in our case.
Well I called the hospice social worker and she tells me that anytime someone goes on hospice they have to have a meeting due to the change in level of care (going from LTC to hospice). They will have a representative there so I am feeling a bit more relieved. I spoke with the aid yesterday and she tells me that he is becoming very combative at bedtime and he never did this before they started the Atarax- so need to point that out to the nurse tomorrow when she calls. I hate this disease.
CO2 Sounds like this may just be a paperwork meeting to transfer care from the LTC doctor to the hospice doctor. I do hope that is all with no mention of moving him. DH has never taken Atarax but Ativan sure made him combative. Trying to adjust a brain that is already out of whack is tedious at best.
I just had a call from the NH patient advocate about DH falling Saturday and Sunday morning. She said the weekend staff thought he was having seizures when he turns his merrywalker over. No one has witnessed a seizure. It has happened three times in 5 months, always on early morning weekends! The nurse practioner wants to put him on dilantin. I ask her to have the palliative care and staff doctor to check his chart for frequency and circumstances before deciding. Anyones loved one been on Dilantin? I am so tired of all this. I also hate this disease.
We have a care plan conference tomorrow too. I'll let you know what they have to say. Above I said it was worse haing him away than at home. My daughter felt that wasn't true. She told me I had to have less stress than when he was here. I'm still not sure. Maybe, as Joni says above, I will feel differently when he has been there longer but right now the stress is at least the same, I think. I worry about him constantly, feel guilty when I don't visit, sad when I do, although while I'm there I'm glad I'm with him. Well, we will see what tomorrow brings.
I am going to bring up the subject of a merry walker at the care meeting. When I mentioned it to the charge nurse she seems to think he will get caught up in it and trip and fall and she tells me that they have to be custom made for each patient according to their specific measurements. It probably costs a lot which is why they are not too much for it. I have no idea how to prevent his falling. Yes it is stressful having them placed but I still say it is better than when he was home. I had absolutely no time to myself and was not sleeping well. I now have time for myself and sleep like a log most nights. my husband never slept much and still does not so I know that would be a deal breaker for me not to be able to sleep.
CO2 The NH owns ten merry walkers. DH and a lady are the only two using them currently, The ones they have are adjustable. Maintenance just raises or lowers the bars according to the users height. The ones being used may be antiques! I have checked online and the more modern models ranged from eight hundred to sixteen hundred. That's a lot of money to me. It would be nice if they could locate one and let him try it for a few hours to see if he would use it. Spending that much and have him reject it would just be a waste. Hope tomorrow goes well for you.
My beloved husband passed away today, which is his 80th birthday. I was with him and holding his hand until his last breath, which was very peaceful. He was the love of my life, and I cannot imagine how to live without him. The strength you all show me tells me I can do it, even though everything in me tells me I cannot.
You all helped me through the terrible trauma of placing him in residence, and I will never be able to thank you enough for that. I will be looking here for more guidance and help for quite a while to come in my new role.
I am so very sad for you Joni, you have my most sincere sympathy. You didn't think that you could make it to this day but you have and if you only think back and remember all that you have survived you will realize just how strong that you are.Take a deep breath and know that we here understand and love you. cassie*
Joni, I am so sorry. I dread the day as much as you did. You've been very brave and you'll get through this next phase like you did the last. My deepest thoughts and prayers go with you.
Joni, please accept my sympathies on the loss of your husband. You were a wonderful wife and caregiver to him and I hope that you feel the love of your family and friends around you over the next few weeks and months.
I need to ask a question. I placed my DH 2 weeks ago. Wow I just realized. Feels like yesterday. Ok back to question. He does fine when I visist and my mother and really anyone, but his mom. She talks about her home all she is doing, where I am at that time. He had a great day Tuesday. I was there. He actually walked away from me and he also after lunch didn't come look for me. So I really was feeling good. My mom said that when I leave he doesn't ask about me. He can't think that way. He can if someone mentions something to him. What do I do with visitors who upset him. People do not realize you have to talk about other things than your life outside of their world. The staff said he was fine until she showed up. I am hoping when I go today, she didn't mess things up so bad. I am hoping he forgot yesterday. I am sure he did. I can spend 6 hours with him and the the next day he will tell me he hasn't seen me in a long time.
Jackieem29, it sounds like things are going pretty normally if you just placed him 2 weeks ago. My husband moved from ALF to LTC in February and I am just now getting used to the change. I would not burden yourself too much about how others impact your husband because really you do not have control over that and one thing I have learned if it is sort of a waste of energy to focus on thing one cannot change and fretting over these things does not change anything. It is a process getting used to placement and I know in the beginning I was concerned over everything that went on but as time went on I was able to let it go and just take things as they are. Spending so much time with your husband is a choice. I personally could not spend 6 hours a day as it is too depressing for me as we really cannot communicate and there is really nothing to do except sit and hold his hand which is what I do now mostly. He sits and babbles to people who he thinks he is talking to and I hold his hand. Placing my husband was probably the most difficult decision in my life but I know keeping him home would literally kill me. Just be kind to yourself as you continue the journey. I tell myself that he is now in good hands and that helps me to let go a little bit. God bless.
First I want to say how very sorry I am to you Joni that you have lost the love of your life. I cannot imagine what that feels like yet to know he is really gone. As I read all of these posts I think how so many of us are connected because of such a terrible ordeal that we are all going through. Even though there are so many stages and setbacks the support on this site is amazing to me. My husband is in a period of lucidity some of the time and he always wants to go home with me. I have been told by many to enjoy the lucid times and I do. I know that in this horrible disease there is no telling what each visit will bring. I too realized that I just could not take care of Jax anymore. It was such a helpless feeling to drive away and leave him at the NH. I am visiting him every other day and some days I dread it so! The feelings are all jerked around and i experience so many of them at the same time. I appreciate CO2's statement that it is a process getting used to placement. I just keep telling myself...one day at a time.
Terrible Ordeal..Horrific Disease..Heartbreaking..Difficult...Painful..Somehow I feel there are no words to even describe what we go through.
I usually go to see ( visit implies interaction) my husband daily. He no longer speaks and is not responsive. Occasionally he may say a word or two out of nowhere. But, I talk and hold his hand. I kiss him but he no longer is kissing back. When I am alone with him', I cannot stop the steady stream of tears.
So why do I put myself through this everyday??? Because I love him and since he is on hospice and declining rapidly It is what I need to do.
Lorrie, I admire you for your courage in visiting every day. Maybe things will change for me as he declines. I usually go and feed him lunch and it gives me something to do. Had a call the day before yesterday and his blood work is off--his potassium is high so they are giving him kayexelate. He does not cope with medication changes well and when I read all the possible side effects I now wonder what changes this will being. They cut back on the Atarax because it was making him combative instead of calming and they are stopping his breathing treatments because he will not leave it on long enough to do any good. The journey continues.
Yes, the journey continues,it is so heartbreaking,tho I try to put on a happy face for Sonny.I usually go twice a day, to feed him lunch and supper.He is staying pretty steady,but I know what is coming.He does recognize me and his aide said he will say my name when I am not there. That is funny because he never called me by name it was always "Honey".When I put him down for his nap I can't help but let the tears flow,how can this happen to my dear husband?I know my DAD always impressed on us that life is not always fair,but who expected something thisheart rending.
jackiem29, That's great that your husband is doing well and even walks away from you. Just don't make your visits so long that you create an expectation that you'll be there all the time. My husband walks away from me a lot more than he did when he was admitted and I'm pleased that he is comfortable with that. I usually limit my visits to 1½ hours, which is as much as I can do without getting too tired and really as much as my husband seems to want.
Your mother-in-law really sounds like a most irritating and trouble-making person. You may have to put some limits her visits. It's hard to get someone to change the content of their conversation, but maybe you could get her to make her visits shorter. How long does she stay? If it's more than an hour, maybe the staff could work with you to ask her to make her visits shorter. She wouldn't have to know that she is the only one who is being asked to do this. On the plus side, at least your husband has several visitors.
I wanted to let you all know what my experience of widowhood has been so far. I have periods of tremendous grief and periods of shocked numbness. But overall, the horrible grief and loneliness I felt for the first few months after placement was far more unbearable than this. My grief today is uncomplicated by worry about my husband, whether he will fall and break bones, or hit his head, or get a terrible UTI, or get hit by a resident. I didn't realize how much my earlier grief was clouded by the constant anxiety and worry about his life at the long term care center.
When people said the worst grief was already experienced, I didn't believe it because death is so final. But it my case, at least so far, that appears to be the truth.
Joni1957 it is good to hear that you are doing okay. After getting early morning calls from the NH two Saturdays in a row about DH falling and then spending depressing days at the facility I feel like I am going off the deep end. The anxiety level for me is getting near the top of my limit. I hope you continue to progress with a good life for you and keep hanging out with us occasionally. I know I need all the support and understanding all of you give. Take care, Joni.
I can so relate to all the comments of those wives whose husbands are placed. had an interesting experience today. Had a call from the hospice nurse and apparently while she was there he went off she said, screaming and trying to fight some type of war. Long story short I later found out after visiting him,that hospice is in the process of determining if he needs higher level of care. They had a hospice person with him all last night to,observe and apparently had an okay night. I know he hardly sleeps and the agitation is causing him to literally waste away. There was another worker there today when I was there to observe his agitation and behavior. She mentioned Thorazine but still do not know. When I look at my husband I see this skeleton of a man who still knows me and at times can be lucid but other times he becomes psychotic. Very scary. I have peace though knowing that hospice is at the top,of their game as I know he is one of their more challenging patients.
Joni, I understand everything you said and am going through the same thing. My constant anxiety and worry is gone and she can't be harmed by it anymore. What a gauntlet it is we go through.