I have had to put my LO in a nursing home, and I am having a very hard time dealing with it. It was just the two of us, as all of the kids have gone on their own. I was taking care of my LO 24-7, and now I am just lost. I have things to do in the day time, but the nights are awful. I am retired and go to see him every day. I miss him when I am at home, but when I go to see him and feed him, I leave feeling worse because he does not always know me. I hate this!!!
Welcome to the message boards, cnut. I'm Diana. My husband is in late stage 5-6, and he's still home with me. I'm full time caregiver for him right now. Caregiving is so overwhelming at times that I often think about the physical and emotional stress reaching such a level that I will have to place him. I helped my mother when it came time to place my father, and even that was emotionally hard for me. It was hardest seeing how tough it was for my Mom to place her husband of 52 years. Sounds like it was really recent that you had to take this step. I know it takes time to adjust to the change. I'm sure the loneliness never fully goes away. You will find lots of kindred spirits here. Lots of understanding and support.
Welcome cnut. So sorry you are having to go through this nightmare. I feel for you and I also feel for your DH. I know I am going to be so lonesome when he is gone but I have tried to prepare myself as best as I can. Mine is in low 6 I think. He still walks and talks some but he sleeps virtually around the clock. Tonight he fell out of bed or getting out of bed. I heard this loud thump and ran in to his room and he was laying on the floor on his side. He couldn't move for a while and didn't want me to call anyone so I put a pillow under his head and covered him and layed down with him. After a while he need to go to the bathroom so I called son in law (lives next door) and the two of us got him on his feet. They get so helpless sometime we just have to have help.
You shouldn't feel bad about putting him in the NH because when the time comes to do so, there is no other alternative, for his safety and yours. I know I cannot lift on DH and he is getting as week as a kitten. Tough decisions we are going to all have to make.
Welome Cnut. You are living the scenario we here all dread. placement of our spouse is not always a choice, but necessary for health and comfort. for you both. i know my mom at 85 was not able to care for my dad (RIP) the last yr of his life and she was a nurse of 45yrs. just too overwhelming and sometimes it jeopardizes your own health as well. I know its so hard but in timeyou and he will adjust and see its for the best. stick with the group here, there will be comfort from many here who have had to place as well. divvi
cnut welcome. I put my DH in a NH a month ago and am still adjusting. I don't know when I will feel comfortable alone. I work full time so it is important that I get rest but I go to bed and just stare at his side. I hug his pillow and cry myself to sleep most nights. I haven't found any better solution but to talk it out with all these wonderful supportive people here on this website. We cry, scream, hug and above all listen with no judgment. Either we are going through it or someone here is about to go through it and it really helps to talk it out.
Welcome cnut. My husband is in a dementia facility. I feel better knowing he is safe. Though he is nearing stage 7 he is getting much more mental stimulation there with his "peers" than he would at home.
Oh, cnut, bless your heart. I am so very sorry. I have not had to think about placing my husband so far, but my mother had to go into a home. It broke my father's heart. He was a doctor, but caregiving for an AD patient can be entirely too much for one person, no matter how much that person knows. He moved into a little apartment associated with the home, and spent every day with my mother, except for times when he was in the hospital himself. They were married for 51 years.
My father moved here to live with us after my mother died. He was having enough health problems that he realized he really shouldn't be on his own any more ... I know he missed my mother very, very much to the day he died, but it did get better. He did enjoy being here, loved my husband and doing things with us, learned to use the computer we got for him and surfed the web, made friends with the neighbors, found some volunteer work he really liked, spent a lot of time exploring the parks around the county and photographing local wildflowers.
Cnut, your feelings about crying at nite and the severe loss after placing him , is exactly why alot of us here just cant think about even considering a home right now. of course we know if the tables turn on us and something drastic happens we will have no recourse as well and have to do it. but the loss of having them as a companion and having the 'empty nest syndrome' on top of it all seems so sad and overpowering at this point in your journey. i hope you can find some activities that help take your mind off things and you can find some joy with friends or relatives- a visit to the dr for antidepressant or sleeping aid may be in line for a bit, divvi
Cnut, we just got back from visiting my BIL and SIL. My BIL is in a AD NH since Spring. My BIL actually asked to move to the NH. My SIL had just retired and had planned to keep him at home. She was distressed at first but it is really working out best for both of them. Danny is happy since he can socialize with people. My SIL is accepting the change and her health is getting better. She can take him out and visit whenever she likes.
It was good for me to see because I dread thinking about having to place my DH oneday. (My DH also has AD.) But seeing their arrangement makes me realize that it can be very positive. It is another transition.
Cnut - I put my husband in a facility a 1 1/2 years ago. At first it was hard and like you I cried a lot. Days were not too bad as I work full time. I agree, nights were more difficult. He is in a safe place and you have become the advocate for his care. You now have the opportunity to enjoy what is left of him instead of being the main caregiver.
I call myself a midow (married widow) now. It is a difficult place as I am not ready to do things a widow would be doing as he is still alive and all the couples things that we used to enjoy together are somewhat closed to me. It was about a year before I was comfortable starting to step out and do things on my own with friends at night.
Give yourself the time to grieve the loss and change - it is okay. Start doing some of the things that you are interested in to fill the nights. He does not need you at his side 24x7 any more and you do need to start to build a life for yourself.
One of the interesting things that I have found is that nights where I am home by myself (if you can count 2 dogs and 6 cats being by yourself) I am much more tense and cannot go to sleep very early. Nights when I go out to dinner with friends or see a movie or go to the theater, I am sleepy and ready to go to sleep a lot earlier. There is also a lot less tension in my body when I wake the following morning.
Cnut, I can't bare the thought of being here alone. I will keep my DH here as long as I can. Maybe you could visit us at night and pass some time. You could tell us about yourself. Things like if you have any pets, what your interests are, how your day has gone, cry on our shoulders, or even tell us a joke. We enjoy hearing from you.
I put my husband in a care home a year ago. The first few months were awful. While I missed him terribly, I was exhausted by the 24/7 care that all I wanted to do was to sleep. For whatever reasons, Friday evenings were the worst!
Little by little, I have found a life without him. I went to Alaska in June with one of my daughters and had a wonderful time! Early in July, I went to Denver and helped another daughter move back to California. Later in July, I went camping with my sister.
I have a cousin and another friend who have become my lifelines. I talk to both of them many times a day. I go places with one or the other of them and out for lunch, etc. I am very involved in my church and I also play the organ for another church.
As much as you loved your spouse, he is going away from you. Mine is now in the last stages of AZ and he's not expected to live through the winter. You have to find your life without him. Even though your spouse is here in body, little by little, that AZ takes ahold and he will be gone long before the body stops breathing. But I think each person has to go that journey their own speed and their own way. When your spouse has left this life totally, you will be glad you have already started on that "new life" without him.
Maybe the biggest reason I have been able to go on like I have, is that I know he is being well cared for. I am so very pleased with the care home he is in. He is happy there and they are so good and kind to him. The worst thing they have ever done is to shave his beard off!! (It has now grown back.) Since I simply can't take care of him, I'm glad he is where he is.
Acccccck! When I put in the application to the place we all decided on a couple of weeks ago, I was told it could be well over a year before he could be placed. So this is the plan I had in my mind. Yesterday, I got a call telling me they have a bed open for Lynn. *SHOCKED* And I need to let them know today if we are going to take it.
I am not ready for this!!! I am, but I'm not. I will never be ready. I still love his ghost trapped in this strangers body. And this stranger, is an innocent victim to AD hell, a child trapped inside...and I feel I need to protect him.
They want to have him placed by Wed at the latest. Damn! so fast! I worry about him. Can any of you tell me ... did your spouse adjust? I can't help it I can hear him crying and asking over and over why can't I come home?! Enough to rip my heart to pieces.
I need to go, his nurse is going to be here soon..... another thing... because he will not let me bathe him, I JUST found out he has a bed sore. And he has had it for awhile, as it is calloused over. I only found it because he had a bad bathroon accident. And as much as he hated it, I did help clean him up. He wanted to just pull his pants back up.. accccck!!! So I saw it and just burst out crying. I WANT to care for him, but he wont let me. I can't help but think at the nursing home, they would have noticed his bed sore..... Damn I feel like a complete failure.
I will be back later, I have to make up my mind today... sigh
Nikki, you said it yourself, you'll never be ready. The fact that you were told you might have to wait a year, and that now suddenly a bed is available, sounds like it was meant to be. Whatever you decide, there is no way you have failed your beloved Lynn. You've hung there in extremely difficult and sometimes dangerous circumstances. In spite of everything the AD devil has thrown at you, you're still trying your damndest to do the right thing. You are my HERO!
Nikki, please don't blame yourself....pressure sores are like doo-doo, it happens! I know how conflicted you are about having to place your beloved Lynn, but at this point in time he probably needs more care than you are able to give him.
When I placed my husband I knew I could not do the caregiving for another day....I was completely burned out and so, maybe, that made it easier. He did adjust and I attribute it to the medications that kept him calm. He never once asked to go home....I don't think he really knew where he was or what was going on.
You are a young woman, my friend....you have a life to live.....you have health issues, you have a terminally ill mother, you have supportive family members who are not second guessing you....this may be the time to take care of Nikki.
No one will doubt your devotion to Lynn....my thoughts are with you.....and no matter what you decide, we will all be here for you....Big hugs coming your way.
Nikki - you need to do what you need to do. You have found a place for him and if your circumstances are such that he needs more care than you can give and you need space for yourself. You have taken care of him a long time and sometimes we have to bite the bullet and turn some of the responsibility over to someone else. You should not feel guilty about the decision to place him. If, things change in the future you may feel the need to bring him back home for a while. Just go with the flow.
Nikki, just do it! It's time. Another year could kill you. Remember, they have several caretakers round the clock doing what you're trying to do all by yourself. This doesn't mean you're deserting him. You can actually give him more loving support when you're not caring for him 24/7. We're here to hold you up emotionally during the transition.
HIs nurse is late...... just since I wrote the first email to now... 6 things have happened that make me know now is the right time. Knowing it and being able to do it are two different things. *sigh
This nursing home is the best in our area, it is only 20 minutes away. It is ideal, I was just counting on more time. Thank you all so much for your support. I know Lynn will ask to go home. I can't even go visit my mom for 2 hours without him asking when we are going home at least 30 times!
He will miss the dogs.. he worries about them whenever we are away. I swear he will miss them more than me!
Nikki, I Truly believe that God takes care of us. There is a reason that the room came avail so quickly, it is b/c you need it and you need it now. I know that you are second quessing, but if he has one bed sore that you can see, there may be more breakdowns lingering near the surface that have not erupted. you can take the dogs to visit him. Just let someone keep them outside and you can bring him out in a wheel chair to see them. You can make outing for him as long as it is medically and physically possible. YOu have noted that this is the BEST and that is CLOSE, If I were in your place right now, today, I would look at this as a blessing. Love you and praying that you reach a peaceful decision. Phyllis
He is going in the nursing home on Tuesday. TUESDAY!!! *sobbing.............
One of the reasons he is getting in so quickly is because this is a private nursing home and they do not have a formal waiting list. When they met me, I was a wreck, I had just another TIA and found out my Mom is terminal. Then we found out a couple of the big wigs there are friends of the family. I am sure some strings were pulled. The other reason I believe is just what you said. I have been praying for strength and guidance.. seems He sent a solution. One I am not ready for!!! But a much needed one.
I need to take Lynn to the clinic... the nurse is concerned there may be some break down under the healed bed sore. acccck! Thank you all so much, you all helped me ... such a horrible place to be in.. but I am so grateful to have all of you here!!!!! I will post more when I collect myself a bit more. ((hugs)) Nikki
Nikki, i am glad you have found a place so fast for dear Lynn. you will see he will adjust and maybe your fears are only in your mind. some do really well in short time there! its natural he will have some days at first but they do adjust in time. and yes, with bed sores, no bathing, and your health issues its definately TIME! go for it and you will find solace knowing you did your best which is all that can be asked of us. stick to the boards after you place him and give it a few days like they suggest if you can to let them help him adjust and get him in a routine. its hard gosh i know i dont know how i would do it either, but if its time its just that. we will be here to hold hands and lots of hugs to see you thru --you are making the right decison and later you will be grateful he is being cared for my professionals. love to you both! Divvi
I have never directly posted to you before now. I have read (I think) all of your previous posts, and I feel very connected to you. My husband is 52 and in stage 6. We are not where you are yet...but I know it is coming soon. From your posts, i know how compassionate you are for others. And, now my darling, it is time to turn some of that beautiful compassion onto yourself. It is time for you to begin to breath again...allow yourself to see the beauty in living again. I have learned so much from you. Love, Brady
Nikki, I will be praying and thinking of you all weekend. You have jumped a major hurtle and now I am praying for peace and comfort for you and Lynn as well as quidance and compassion for those caring for him. Take a deep breath and give yourself a strong cup of tea. You have nothing to feel guilty about and do not let anyone tell you otherwise. Love you Phyllis
Nikki, God moves in mysterious ways. Accept the gift you've been offered with a grateful heart ... it could not possibly have come at a better time.
Yes, many (most? all?) of our loved ones adjust to a nursing home. Some adjust right away, some take a little longer. Many are much happier and more comfortable there, where there is a large staff to care for them, and people just like them all around.
I know you're in a panic, but please try not to be. You need this, and so does Lynn.
Nikki, I know how much you love Lynn and this is heartbreaking for you. He will be well taken care of I'm sure and you need to think of your health. I hope your sister is still living with you to give you some moral support thru this difficult time.
I've been reading these posts and my heart is breaking because I am identifying with that very real possibility. it's really been on my mind the last couple of weeks because of all the shifting of finances, etc. I'm finding myself staying in bed with him just snuggling. We've been staying in bed until maybe 10 o'clock. We're not sleeping. Just holding each other close. It's like I don't want to let him go and if I hold on tight enough, I can keep him from leaving. I know this is foolish talk. I'm really very realistic. But just the thought of him being away from me---my eyes are full and I'm going to have to sign off now.
Thank you all.... God this is harder than I ever imagined. And I imagined horrible things. I went today to bring all of his things and set up his room. I will go early tomorrow to hang some pictures and bring a few more things. Then his children and I are going to bring him to his new "home" at 2:00
My world is falling apart... I imagine this is hard on his children too. But, I can't help it.. I have little empathy for them. I know that sounds so heartless..... but some of them see him only once a year at Christmas. It has been this way for at least 15 years! Yet, these are the same ones who are so upset now, who will argue over the stupidest things! I want to scream at them.. where were you when he did know who you were? Where were you when he needed you? Where were you when I needed your help trying to care for him?
I have cared for him alone. ALONE! Funny how they can make a trip to put him in the nursing home... telling me what they want in his room... yet they couldn't make the trip to see him before, when it would have mattered to him. He doesn't know them now. He has zero recall.
I am not sure how I am going to make it through tomorrow. The kids were thinking we could spend a lot of time there with him. I did feel the need to tell them, I wouldn't be! They just don't seem to see that he is not going to want to be there. He is going to want to go home with me. And when he cries out, why can't I go home? It is going to break what is left of my heart. Him seeing me falling apart, is not going to help him, it will only make things worse.
For those of you who did have to place your spouse... those who didn't want to be there.... how long did it take for them to adjust? Also, I am hearing conflicting information... I can't decide if the transition would be better for him if I stayed away for a week or two, or if I went to see him every day. What did you guys do?
Thanks for letting me get some of this out. God give me strength! Give all of us strength!
I'm sorry I have no advice for you but just wanted to let you know that I will be thinking of you and praying for you. We can hope that what you imagine will not be as bad as you think. Do what you need to do--not what his kids want. You have no reason to feel guilty about ANYTHING.
Nikki-most facilities tell you to not visit for a while. I could not stay away. My husband did not know where he was or why. Felt he was in prison and wanted to know why. Broke my heart. He was terrible after I went home. On days I didn't visit he was much better. There is no right answer. I thought Lynn's family was supportive of you=what happened or are you now seeing their true colors. By the way=Bill did settle in and has no memory of ever being elsewhere. Very sad
Nikki, I have been thinking of you today knowing what you are facing tomorrow.....
There is no way I would have left my husband in a strange place and me not being there every day to make sure he was fine and to make sure the level of care was what I expected it to be. I don't believe for a moment that anyone is helped by staying away for a week or two. Most of the experts that I know don't encourage that practice....
My suggestion would be to visit for a bit and if things get "dicey" and he asks to go home then just tell him that you need to run some errands or have an appointment and you will be back later. I would also suggest that you visit before a meal time.....when he is ready to eat you can slip away and he will be distracted. You can always tell him that the doctor wants him to be in this "hospital" until he is feeling better. These are all called "therapeutic fiblets" and will serve you well in the next few days.
By the time my husband went to live at his facility he was so far gone and so medicated, I don't think he realized where he was.....he was miserable there....he was miserable at home...the only good thing was is I didn't have to have him fighting me anymore. So, how Lynn will adjust...who knows? But just remember, you are not giving up.....you have done everything and more that you could do. The disease is relentless....the disease wins.....
You are still his caregiver, his wife, his sweetheart and his protector.....only now you will have a "staff" to help you......
Please know that we are all standing with you tomorrow...holding your hand, lending a shoulder and wiping your tears.....
Nikki, I am so sorry that you are having to go through this. You and Lynn have been in my prayers for a long time. The others have spoken eloquently about this being the right decision and coming at the time you need it most. It never would have been easy, and I know that tomorrow will be one of the roughest days of your life, but God will give you the strength you will need.
Everyone adjusts differently, according to what has been written here. And some stayed away for two weeks and wished that they hadn't. Some went every day and were glad they did. Some go every other day. You will have to see how it works best for you and Lynn. The length of the stays may be shorter at first while you both adjust. One person says that she never says "goodbye" but says "I'll be back in a while" instead. A while can mean a day or two and makes parting easier, according to the advice from others here. These are things I remember reading here, Nikki, and I'm relating them in shorten form for you instead of trying to find the actual discussion.
Don't let those kids get to you. If you take something up there that they insisted on and you feel is wrong, you can always bring it back home afterwards. Make it easy on Nikki.
Oh Nikki, my heart surely feels your despair tonite- i know you will win this difficult battle. i know for me i could not stay away and would want to stay as much as possible until the new surroundings became more familiar but it would be for my benefit more than DH. i think Lynn will adjust but it may take some days-i wouldnt allow the kids to hang around much they may upset him more since they are strangers to him now. please do whatever gives you peace, it may be easier to give it a few days away from him and allow you both to adjust. we will be there with you dear lady-feel our hands on your shoulders tomorrow supporting you in all decisions. Divvi
Thank you all so much for your support. I know this is a horrible analogy... but you know how when your beloved pet is suffering and you have to take them to be put down? you suffer so badly waiting.. you know you have to do it, you don't want to, but you love them enough that you must. This is how I feel about tomorrow. *sigh
I do have his kids support... they all know he needs to be there. I am just angry at this whole situation, and they are just a part of it. We had a minor issuse over a photo today.. one wanted more of her up... my whole world is falling apart, I have little patience for something so petty. A picture of a stranger, is not going to make him remember he has a daughter. Too little , too late.
He was my world, this is just so damn hard. i thought I was ready for this. I thought I had said so many goodbyes to every aspect of him/us that it couldn't hurt this badly again. I was wrong. As for visits, I don't know what I will do. I guess I will have to see how he reacts first. I just can't help but think, if he gets all wound up seeing me - wanting to go home, it isn't going to be good for either of us. He will forget, I wont. *sigh
Nikki - I can only share what happened to my sister when she put her husband in a foster home for 3 months cause she needed the break. She slept what seemed 24/3. She was so exhausted. He didn't have diagnosed AD but I believe 2 years after his stroke he suddenly gave up due to vascular dementia (due to all the reading I have done the last month). The last time he was in respite care for two weeks she slept almost the whole time. She needed it cause he passed on a couple weeks after bringing him home. If she had not rested, we may have lost her too.
Point - you may decide once he is settled you need to catch up on sleep/rest keeping in mind this will not only help you physically/emotionally, but allow you to be there in a way you couldn't when you are taking care of him 24/7 and so exhausted. Otherwise - take it one day at a time. You will know what to do.
Nikki--I cannot imagine how difficult this is for you and him. My heart truly is breaking for both of you. I'm sorry for his children that they were not willing and/or able to visit him before now. This will hurt them, too, but perhaps they will grow from the experience.
Nikki-I don't have to imagine how difficult this is for you-I know how hard it is. My suggestion-visit as often as you wish-just tell Lynn that you have to leave for a little while and that you'll be back soon. Have someone distract him when you leave. He won't have any sense of time so you won't be fibbing. Good luck, dear. Nora
Nikki, we are holding you close to our hearts today. Whatever happens, please do try to take good care of Nikki, hard as that might be. You won't be any good to Lynn at all if you keep having TIAs, and your mom needs you too. To be there for them, you have to be there for YOU first. Lots and lots of positive thoughts are coming your way today as you take this difficult step. Love and a big hug.
Nikki, you know you are doing the right thing for him. It is never easy to make this type of decision but it is a loving decision based on what is best for the both of you.
The advice I got when I placed my husband was to just bring him and not make a big deal of it when I left. They also told me that it could take him a little while to adjust and that it might not be good to see him for a few days. He did adjust and I was seeing him within 2 days. It was hard at first but after a while he no longer asked to "go home".
The advice up above about "I will see you in a little while" is good. I usually tell him that I have to go back to work or that I need to go let the dogs out and will be back in a bit. He seems comfortable with both of those. I promised him that I would see him as often as I could. So far, I have been able to keep that.
I am only now catching up on posts after the cruise. Nikki, you are doing what is best for both of you, but I can feel your heart breaking, and I can only imagine what you are going through. If thoughts and love can give you strength, you have plenty of both from all of us.
God Bless you, Nikki. I'm in tears just imagining, as I know I am very close to being in the same shoes. My DH will be released from the hospital on Friday. The guy in charge there called to ask *IF* we were going to take him home or they would send him to the state hospital 90 minutes north. OUCH!!! At this point I am bringing him home, but just that fleeting instant where I could say yes or no...sigh...well it hurt alot just to think of it. I can only imagine what you are going through, dear Nikki. My thoughts and prayers are with you now.