Well, I got their attention. The nursing supervisor called and said they will start to reduce the dosage today. She agrees they cannot think of anything else to try. She examined my husband this morning and is concerned that the antibiotic has not helped the shiny red areas on his lower legs, which they fear is cellulitis.
paulc, I suppose it could be a drug interaction but the pharmacy, which is in-house, should have picked that up.
marche, He gained10 lbs. last month and 2½ lbs. in the week after that. He is not gaining 1 lb. every day but he did have such a gain yesterday. They had to weigh him two days in a row because the psychiatric consultant would not accept the accuracy of the 2½ lb. weight gain. He is on the on the same diet that he has been on for the past 2 years. If anything, he has been eating less, for I am not taking him to the canteen for snacks. Some of this weight could be fluid retention.
I can't help but reply to the latest news of your DH above. I lost my DH on 10-20-15. His last two months showed the same symptoms your DH is experiencing. Tom was quite energetic, walked a lot, rarely laid down for a nap. Didn't sleep all that well at night either. Lived in a residential alf and was given a good diet.
DH did experience some heart failure, took heart meds and had slight swelling of ankles and feet only so it became difficult for him to wear shoes so I bought some felt slippers w/semi-firm soles and velcro closures. In August one of the aides put his shoes back on and he was so happy. About two weeks later he developed a sore on bottom of each heel. Doctor took a look and prescribed antibiotics which were ineffective. After a week, dr. suggested he go into hospital. They began iv's for treatment but ordered bed rest. Wound nurse examined him and found a couple of of red spots on torso. Not really bedsores. All sorts of cultures were done to no avail. Finally one dr. told me that his body was just breaking down and attacking itself. Sores begin near the bone and develop outward. Non-healing. 5 days in hospital and he had forgotten how to walk! ALF said he could only come back if he could bear his weight for 2 min. So it was on to rehab. He was there for 3 weeks; never walked again, refused to eat 99% of his meals, was given Boost 4 times a day which equaled lots of calories. Many more sores erupted. ALF did take him back bedridden in hospice. After 5 days he was gone.
It was such a shock for me to lose him this way. I am still reeling. I was not prepared for his body to be so ravaged in such a short time.
I am praying that everything works out well for your DH.
Hi Shirley, Thank you so much for sharing what happened to your husband. I am so sorry that it turned out that way. I can completely understand why you are still in shock. It is hard to believe that his condition could deteriorate so quickly. I think your story shows what so many of us fear - that even if our spouses seem to be doing well, they may suddenly suffer a serious setback as a result of just one illness, or one adverse side effect, or one fall.
It looks like you are new to this site. The founder of this site, Joan, would ordinarily welcome you personally but like you, she is a recent widow, and she has been taking some time to herself. So please allow me to welcome you. I found the site two years ago when I was looking for advice about admitting my husband to long term care. The other on this site have been a godsend, for they make me feel that I am not alone. Even the thread for widows and widowers is helpful to me, for it lets me know that others have survived this experience and that when the times comes, I will be able to survive, too. I look forward to reading your comments in the future. Best regards, myrtle
They started cutting down the dosage on Tuesday. As of this morning my husband has lost 3.4 lbs. The swelling on his feet and legs has gone down a bit; his feet are still swollen but are now recognizable as feet, rather than egg-shaped blobs. The redness on his left lower leg is completely gone and the corresponding area on his right leg has faded to a pale rose. The nurses think he is not limping as much. These early changes are encouraging.
The debilitating loss of energy and ability some of you talk about has come for me now. All the things I thought I would be able to do once my husband was in a facility I have not been able to do now that he is In one. I'm having such trouble finding the energy to do anything. All I want to do is sit and read, watch TV, etc. When I do get an invitation to go somewhere it's as though it's something I have to do instead of something I would enjoy. Just now, while reading some of your posts, I received a call from my daughter who said her mother-in-law, who is my friend, will be joining us on our annual family vacation and would be sharing my facilities. We had discussed this before. Instead of being happy about this, as I once would have been, I thought, Oh no, there goes my privacy! What the heck is the matter with me? This isn't the real me I get pleasure out of my books, movies, etc., but when it comes to being around the people who mean a lot to me, it is sometimes an ordeal. Of course, once I'm in the moment I feel good and enjoy myself. It's as though I'm still that caregiver who must stay home.
When he was still at home all I thought of was being alone so I could go out and have some fun; even going to the local KMart was a treat. Now I feel like some old fogey. I feel as though the debilitating loss of energy some of you feel when you lose your loved ones has begun for me now, even though he has been in the LTC for a year and a half. I do have people who care about me (even though we have lost touch with some of our friends because of almost 10 years battling this disease) and I'm grateful for that.
But, you know, I don't feel sad, I just don't have the energy. I pray this feeling goes away soon and I can really enjoy my life. I'm on an antidepressant and see the doctor regularly. My overall health is good except for some spine issues, which also could be playing a part in the way I feel. My spouse has adjusted to the facility. He has bad days but mostly good ones. But, I also must admit, getting ready to visit is also becoming more difficult also. I just don't understand it.
Hi mary75*, Thanks for your encouragement. I find that I have to "talk" all the details of these issues through with someone and I don't know what I'd do without the people on this site who are willing to listen to them.
Hi Bev, I have been trying to figure out this tendency of ours to hide after our spouses go into LTC. I don't think it is just depression although that is part of it. A lot of us take antidepressants and see the doctor regularly but that does not seem to help. I think we are suffering from social isolation. Wikipedia has a pretty good write-up on this and for me, it checks a lot of things on list. Not going out of the house, not wanting to be with other people, not having the energy to get involved with things.
I looked on the net and there is some research on what social psychologists call "caregiver isolation." As full-time caregivers, we were forced into years of isolation Some people on this site call this "being a prisoner in your own home," which is an apt description. But why does our status as prisoners persist after our full-time caregiving has ended and we have been given the keys to our prison cells? Even if we don't get invited to parties, why don't we go the mall or something? If there is anything on the net that talks about phenomenon, I could not find it. My guess is that a big part of it is habit. Like all habits, social isolation gets comfortable. When you combine this with years of having had to do things we did not want to do and of depriving ourselves of things that we wanted to do, it is understandable that we are unwilling to expose ourselves to anything that might be disagreeable. I would love to hear others' theories of why we behave like this.
I have been thinking about this thing called social isolation. It is coming up a year, just finishing up my second bereavement group and for me a lot of,the isolation and preferring solo pursuits has to do with not having anyone to do things with. I stopped going to the Alz groups and honestly those were my so called "friends" but after our loved ones passed we all sort went our separate ways. I now have 2 people that I have done things with and I enjoy their company but they have their busy lives--one still,has her husband in assisted living and one is still working full time. I am just at the point now where I want to volunteer at my church but honestly the thought of going to group meetings and such does not thrill me too much. While I have made progress, it still seems painfully slow,to re-engage with the land of the living. I think part of it is personality. By nature I am introverted and have never liked big crowds of people and prefer one on one relationships. Right now to reach out to people and invite them to do something is still very hard. I totally agree with you Myrtle that social isolation becomes comfortable. I think that after all the years of heavy responsibility thrust upon us I think that the isolation is a way to heal our broken psyches. I am less isolated now than I was at first so.i would like to think that it will improve slowly over time.
Thanks, everyone, for thinking of us. His feet and ankles have gotten a lot smaller although they are still swollen. He is walking around more, too. Most important is that his feet are no longer sore.
I agree with Myrtle. It all sounds encouraging, and I don't hear anything about increased agitation. Let's see what happens when the Depakote is finally discontinued.
Got the weight today. He lost 5 lbs. in one week, as the drug was being tapered off. Weight has been stable since April 9. No reports of increased agitation but I made it clear that they could substitute with something else.
My husband's birthday was this week. I brought a cake in and "Happy Birthday" was sung and hugs and congratulations were given by the staff. I don't think he knows what a birthday is but he definitely knew he was special today and it made him very happy. The most apt description of him I can give is the one that Joan came up with some time ago: an adult-sized special needs child. Everyone on the unit dug into the cake and ice cream. Most of them can feed themselves but some need help and a few need to have a different food, like yoghurt. It is really touching to see the aides and nurses make sure that every single resident has a treat, even the ones who might not realize one is being served.
Well, my husband has gained back the weight he lost after the Depakote was discontinued. His feet are still swollen, too, although not as badly as they were before. The doctor has put him on Lasix, which is stronger than whatever he had him on before. He has been off the Depakote for a month now and there have been no behavioral incidents. The doctor has ordered some more lab tests, for kidney function, etc.
This is all very good news, Myrtle. Lasix has been around for a long time and does a good job. I have an 88-year-old friend who only had to be on it for a short period of time and has remained edema-free for at least a year. It was good that you were there to move quickly on the problems before they escalated even more.
For the past two weeks I've been walking around with a dental appliance in the side pocket of my purse. It is called a "partial" and it belongs to my husband, who is well into stage 7. A month or so ago he started refusing to wear it. This behavior was attributed to the progress of his disease and since he can still talk and eat without it - the appliance only has a few teeth - we decided to stop trying to make him wear it. So why am I hanging on to this thing? Because if he gets better someday he might need it. (The same reason I still have the sports jackets that I put aside for charity months ago.) But why am I carrying this thing around in my purse? Because if I take it out and put it in a drawer I will have to admit to myself that I am crazy.
I find that I am making more changes in my house as it is more evident that DW is never coming back. And I feel at times that I must be crazy to have put off some changes.
Personally, I think everyone has a little 'crazy' in them. At least we have good reasons for our sometimes-odd behaviors. Here's to giving ourselves a break and having some chocolate!
Good idea, Fiona68 I think it comes down to what is best for us now! Pass it on to be used by someone who needs it, put it away in the drawer, make some changes that will please us?? I've made a few important changes and I am doing better. Going back to my ancestral roots is helping!
My former tough guy is starting to behave like The Princess and the Pea. He has been resisting changing his undershirt because the crew neck of his old t-shirt rubs against his face. So the CNAs asked that I buy him some V-neck t-shirts. I dropped them off this weekend but now I have a dozen old crew-neck undershirts. My instinct is to save them. He always wore crew necks and if he gets better, he'll need them. The denture is still in my purse.
Myrtle, I haven't gotten rid of a single thing of my husband's. He wore suits to work every day, so I have about 8 suits plus sport jackets, slacks, ties by the dozen. I don't even think about getting rid of them. Why? I don't know. Do I think he's coming back? No. Maybe? No! I know that but, still, I just can't bring myself to get rid of his things. I even have all his silly things he saved, in his drawers, taking up room. I feel as though if I get rid of these things I'm getting rid of him. I just can't do it, I don't want to do it. Am I wrong? I don't know. It isn't time for me to do it, not just yet.
So, I guess we all have a little "crazy" in each of us.
I am keeping my wife's clothing. She is gaining weight (need to order sweats for her today) but I know she will lose weight at some point so I should keep stuff that will fit. I am slowly making various changes in the house but her clothing will stay in the closet.
Bev and others. Yes Marie Kondo book has helped me. For some reason I had no trouble getting rid of his clothes. I took what he needed to his ALF and when he passed my son went the next day and donated everything to charity which relieved me from having to go through it. When I had a few things left, I did ask myself if it brought me joy and the answer was no. It made me terribly sad so it had to go. We keep things only if they bring us joy. Getting rid of personal belongings takes time and is something one cannot rush. You can do it when the time is right for you.
Today when I went to see my husband, I found that instead of his usual baseball cap, he was wearing a very stylish and obviously well-made cap I had never seen before. On the front of the crown was a discreet American flag surrounded by the words, "United States House of Representatives." I've no idea where it came from.
Later this morning I'll be taking my wife to be admitted into an assisted living facility. In the past months I've been reviewing different places, and a few weeks ago I found one that I thought would be good for her.
I don't know if it will work out, but we'll see. What I've been doing at home as her primary caregiver hasn't been sustainable--mentally, emotionally, physically. I've written thousands of words in my journal about vain hopes for the future, commitments and broken promises, balance in life. This is one of the most difficult and painful decisions I've ever made.
I feel as though I'm living a story; sometimes you know there will not be a happy ending.
It is one of the worse days of our lives but, with help from the staff, and friends, you can help her adjust to this new life you both have. You will eventually adjust to living apart, but don't give up to soon. There will be days when she will raise proper hell about being there but she will adjust. We all tend to thing we are the only ones who can care for our loved one but we are not. We can put ourselves in our graves if we don't seek help from others. Keep a close watch to make sure she is being well care for and have regular talks with staff and if you see something you don't care for, speak up. We feel guilty, lonesome and totally lost but you will make it. If we are sick and overworked trying to care for our loved one we are not doing them or ourselves any favours. I am now, after nearly three year, finally able to live a life for me and give him my best in my visits and our outings. Best of luck. Take care of you so you can have good visits for her.
RSA, I'm hoping that the move goes smoothly. The next few weeks will surely be hard for both of you but probably hardest on you. Please let us know how you're both doing.
Maybe this sounds uncaring,but I read the comments every day and I am so happy DH is in NH.He was getting too much for me to handle but he fainted and hit his head and could not walk or talk after that.Doctor said it was the best thing that happened for my sake.It would have been so hard for me to place him from home.I do go every day and feed him and it is sad to see him like this, but he is getting good care. My heart goes out to Jazzy and all of you trying your best in a terrible situation.Seems like there are more and more younger people commenting.Those of us who have been thru this know what you're going thru..Prays for you!
I find it hard to not go and spend my days with him or to not take him home everyday but I realize that he needs to make his life there. He needs the type of activities that are stimulating to him. I can't provide these activities and it ends up with him being bores then getting testy with me and me getting totally stressed out. If I go there then he will not be participating in these activities and so I don't go. He has been asked where I am and why I am not visiting and that upsets him as well. He has asked me not to come there but to take him out for coffee which he loves to do. People don't know our situation so they ask. Staff know and have noticed that he is doing better with coffee dates instead of in house visits. We talk often on the phone and he knows I will immediately go if he needs me. It works well for him but I find the time long and very lonesome. Family are not calling or visiting and having moved here late in life I have no friends. I joined the senior Center again but with my back not performing well anymore I just can't do the exercise programs, bowl or curl. Hand to shaky for painting and learning anew language has been tried and didn't work out. So I walk my little buddy, do my shopping and read. TV stinks. I'm not into aliens, zombies or anything violent. I watched " First Daughter" with Katie Holmes yesterday and it's about as violent I want to get. I think I will get back to my knitting soon. There is a great need for lap covers at the LTC so I guess it is time to start making some for fall and winter. We have a bingo every Tuesday night saturating again in September and I have volunteered to call the numbers one time a month. We have a stitch and bitch craft every Thursday afternoon and I may go to that. Maybe they will make some lap cover too. Well that is my big rant. As you can see, being a caregiver for a partner can be very hard. Your not alway free in your heart to build that new world if you are still very much in love with them and you are not really able to have that same relationship that you had. You are the same person but they are not. Here but not here. I guess the answer is for each of us to do what is best for us.
Jazzy, I have been reading your posts for a long time and rest assured my positive thoughts are with you. All,I,can say is yes get back to knitting. Knitting is one of the things that helped me get through the horrible journey of Alzheimer's and it is helping me deal with the grief now. Try as best you can to find things you enjoy and do them as you begin to build a life for yourself now. At some point your duty as caregiver will end although none of us knows but when it does come, you will be in a better position if you work on building and creating a life for yourself now. God bless and now that we are all cheering and supporting you.
I am just so lost and alone that I just don't know what to do anymore. He is just up and down and all over the place. Yesterday he slept all day and was really in a down mood. He says he is upset because we can't live together anymore and he just wants things back the way they were. He told me last night that if we were to live together now we would be divorced in two weeks. I just don't know were these things come from. I try so hard to reassure him but it just doesn't work. He wants to be home so bad but he realizes he can't. I really wish the kids would step up and at least call him. If they took week about it would just mean one call every five weeks. Visits the same. I realize they have lives of their own but they act so selfishly. He did so much for them and now when we need them they can't make time. Just think, this could last another ten years! It's no wonder caregivers often die before the partner.
Due to the effect of an antibiotic on my husband, I've just attended to another difficult load of laundry. I'm getting to the point that I'm ready to turn over laundry duties to the facility. Sometimes I think of women who lived before electric service was installed and wonder how they coped with having to do this kind of laundry by hand.
Jazzy, I just noticed your post from last week. It sure would be helpful to you if these kids would coordinate with each other and put themselves on a schedule of calls and visits. What do you think would happen if you suggested it to them?
About a year ago, I noticed that my husband was having trouble eating supper, even though his food was prepared so it would be easy to eat. At a care plan meeting about that time, I was told that he had started to need complete assistance at breakfast and a lot of help at lunch (which is the mail meal) and they had moved him to the table where everyone has an aide to feed them. I started to time many afternoon visits so I could help him with supper several times each week. But during the last three months, I began to notice that he was eating supper completely on his own and did not need any help. Yesterday I asked the day nurse and she said that he now eating breakfast and lunch himself, with just a little bit of help. Isn't that odd?
Good for him! I tried the scheduled visit thing two years ago and that went over like a lead ballon. They accused me of trying to run their lives and that I was ordering them around. One said he would go through his Dad for visit times not the filter. This filter still has full control and our daughter told them that they have to let me know when they are coming so they don't go when someone else I there. Since she suggested it and not me it works. I am the step- mother and this one really resents me being the POA. He is very well off and likes control but is not willing to fork out a cent to help. He says he only does for those who do for him. What an attitude. I don't ask him for any thing. He re gifts presents. Oh well time to stop bitc**ing and move on.
I have just started to read this thread (is that what its called?), reading this last page first! I can see that I have much catching up to do. I can already see some of "my story" here, now that my husband is in a care facility.
Alzheimers is one painful disease to watch. When will there be a permanent solution for this dreaded disease. My wife is an alzheimers patient. She is often anxious and agitated.She has memory problems so cannot recollect things and has communication problems. There are trying times when we as a family find it very difficult to witness the hardships. Recently we had her enrolled for assisted living services by Prestige Care (http://prestigecare.com/expressions.php). They undertake some memory care program and daily events which focuses on memorable and meaningful events.
My husband has been in the nursing home for two years. I wonder when it will end... Terrible thing to say, isn't it? He's in hospice now. I should be there every day but he still has good days and bad and this could last a long time and Im really not up to it. I can't explain it. I'm having such a hard time going that I think it's making me sick. Is something wrong with me, to feel like this? When I'm with him, I'm glad to be there. When I'm home I worry about him, although he is being well taken care of, but I don't want to go. I was not well yesterday, felt awful. Is this in my mind? I feel better today and will visit but I keep thinking about tomorrow, when I won't have to.
Oh, Bev, no. You've put in at least nine years. Your body is saying you've had enough. I say to trust your body. You certainly have nothing to feel ashamed about. Holding you in my prayers with love.
No shame my dear. Youv'e been through quite a bit.
Could you be afraid to face losing him? I know that for me I wonder if I will be able to sit and wait for my DH's death. It's hard enough to watch them deteriorate with the dementia.
Ladies, thank you. I've tried to be so brave all these years but I think it's finally done me in. I love him but I feel like he's had enough and so have I. Yes, my body doesn't seem like mine anymore, I get so tired.
He was so good today and looked so well. I gave him his treats and we talked. He doesn't know who I am anymore; all he knows is its someone he likes and wants near. By the time I left he had stopped wanting to talk and just had his head down resting.
Jazzy, I am afraid of losing him but at the same time I've already lost him. I've been preparing for this for almost 10 years, ever since the day he was actually diagnosed.
How do we do it? All of us? Men and women? We put up a brave front but no one, and I mean no one, except the people on this site and others going through it, knows what we are going through. It becomes a jail you feel you're never going to be released from, not even when they're gone. It's one stage after another and when they're gone, we go through another stage where we still don't escape that jail.
Maybe I'll feel better tomorrow. Hope. Hope for a new day and a new life ahead. That's really all we have.
Bev,I hope that you will feel better tomorrow. It really is too much for anyone to cope with but you will find the strength from somewhere just as you have done for all these years. I wish you courage and a litte bit of joy, to brighten your days.
Bev, no guilt! There is nothing to feel guilty about. I know when I go to see my husband, I become very anxious just getting ready to go. I have a big health issue (cancer & chemo) so I don't get to see him that often, plus he's about 20-25 miles away. I feel bad when I am unable to go (I actually miss him!), but anxious when I do go! Tonight I called him, no personal cell phone, but the one at the nurse's desk. They called him to the phone & it was the shortest conversation ever....hello, how are you doing, take care of yourself & don't worry about me. Don't even know if he realized who he was talking to! Interesting, frustrating times.