I have posted Monday's blog today (Sunday) because I will be busy tomorrow. I invite you to log onto the home page - www.thealzheimerspouse.com - and read it. Please post comments here. Thank you.
Don't waver. Don't think too much. Don't look ahead.
You can wear yourself into the ground and truly lose everything or you can face this horrible decision and gain some strength back and continue. Consider the truth of that even while you may already know what it is.
Watch your driving! Watch it around knives. Watch what you're doing right now. These conflicts are very powerful right now and we have to respect them beyond our normal attention.
Joan - keep telling yourself when he is placed you can do the easy things for him and let the paid help do all the heavy jobs. That is the truth - you can be his caregiver and they are your manual laborers.
From experience I know that there is absolutely nothing I can say or do that will lessen your pain. Yes it helps greatly to have our family here support us, but that doesn't lessen the intensity of the gut-wrenching anguish. I am so very sorry Joan....
Even knowing full well I can't help with your personal pain, I feel compelled to try to help you through the grief. Just reading your blog and reflecting on when I was where you are now still hurts enough to cause tears to spring to my eyes. I am truly relieved to hear you are listening to your doctor Joan. I was not as bright as you. ♥ As you know it took me having my 9th TIA in a period of a year before I faced the facts. And even then I resisted. It wasn't until my neurologist and friend looked me straight in the eyes and told me if I didn't place Lynn I could be dead within the year that I KNEW I had no options left. I was 41, and I though are you crazy? who dies from stress at 41!! Caregivers for one..... I felt I was in a twisted nightmare I just couldn't wake from.
So often we hear, you have to take care of you so you can continue to care for your loved one. We know we need to grab the oxygen mask first. Knowing and doing are two completely different realities. I know full well in my panic to save a child, I would not grab the oxygen first. And neither did I take care of me, it was all about Lynn.
Hindsight is 20/20. Once we both transitioned, we were both better off. I was able to get some sleep and simply sit without a million worries running through my mind. Lynn was safe, he wasn't starting fire, eating candles or peeing in the drawer. He was getting better care than I was possibly able to give him. He has 3 shifts of fresh help doing the job I tried to do alone. He got the stimulation and therapy he desperately needed. It isn't all bad, in fact if placed earlier it might be even better for our loved ones. They will be able to participate in more activities and feel more involved. I see it every day with residents. They all eventually transition, no matter what stage.
But most of all Joan, Sid will get the spouse and caregiver you wish you could be. Once the burden of 24/7 caregiving was no longer weighing me down, exhausting me and driving me almost mad, I was able to feel the love again. I was a much better, kinder, compassionate wife and caregiver. Our visits are time filled with one goal in mind, letting Lynn know how much he is loved and making him as happy as possible.
Yes the initial pain was as close to unbearable as I ever want to come, but it has also been a blessing in many many ways. I am so grateful for the time we have had, filled with love and laughter. That is something we just could not have had when I was trying to do it all alone. I didn't have the strength, energy or ability. To this day I still struggle with thoughts of wanting to bring him home. Initially I repeated to myself over and over that I have to love Lynn enough to do what is best for him. To give him the care he both needs and deserves. For the past two years I have changed it to, I must love us both enough, to do what is best for us. We have value too, we matter!!! Please be gentle with yourself and always remember, Sid loved you greatly!! He would not want you to suffer this way... ((hugs))
Joan I am so sorry that this is causing you so many tears. You are doing the right thing. Please take care of yourself. Sending you much love and hugs.
Joan--I hear you about how hard the placement process is. Most of us are intelligent people, we are aware that dementia caregiving takes a huge toll on our own health, and yet--we postpone the act until our own well-being is called into question. To some degree, I did this myself. My question is--how can we prevent others from doing likewise? How can we encourage them to place their loved ones BEFORE their own lives take a serious turn for the worse?
Joan - I haven't reached this stage with George, but want you to know I care and feel for what you are facing. I would hazard a guess that if your husband were well or could think normally for even two minutes he would tell you to care for yourself and do what you need to. Your relationship sounds like one of deep love for each other and I don't think he would want you to suffer!
Joan, I want to send wishes for a peaceful Passover for you and Sid. I am not quite where you are, but I do find myself where you were, thinking about what might be the final force where I can't manage my hubby at home anymore...and since we will never qualify for medical, the decision will have to be in home help or facility. It is a scary thought. And just the other day, following a visit from a relative, I noted a new kind of confusion and apathy...and I wonder if it will get a little better or be a firm step downward. And just today I said to someone, when asked how he is, I said a little more downward..and funny thing, he is here in the house with me and I am still alone. One thing that might help some with this transition was something a friend of ours, whose husband just died of ALZ, said to me after her V died. She said that because she had to keep working, and because the way of their house made it dangerous with the steep stairs, she had no choice but to place him. So she said she had 6 years to get used to being at home without him and for those of us who keep our LO at home or are forced to, when they finally are freed from this disease our loss will be harder to contend with than hers...She is an RN. Maybe there is some truth in that hard as placement is and when it comes to it for us, if it does, I will try to remember her words. Try to get a little rest...and take care of yourself....it will all work out as it is meant to be.
My deepest sympathy for you and prayers reaching to the heavens for you. I read your blog and I was so deeply moved at your honesty. Please don't ever compare yourself to others. First of all, each one of our circumstances is unique inspite of the fact that we have a common denominator. I read on blog of a loving, caring, devoted woman who is truly doing everything humanly to care for her loved one.
I will pray that God will direct you in wisdom for Sid's placement. I pray that you will find peace in your decision and that Sid willingly accept it.
Hi, Joan. I'm brand new to this blog or any other one for that matter. My husband George and I have been happily married for 52 years, with three sons married with families. In Dec of 2012 I was diagnosed with Lambda Light Chain Myeloma. George went with me for the first appointment with the oncologist. They had to place a chair right beside my treatment chair for George so I could be sure he didn't wander off. My doctor told me to tell our sons that I was going to have to have some help. I had taken care of him at home for 12 years after his Alzheimer's diagnosis. His general physical condition was very good, but has taken some turns since we placed him in a nursing home mid-January of 2012. We have experienced a most traumatic experience since then. He has been in four hospitals and two nursing homes. He was just having a terrible time adjusting to this new situation. Things are beginning to settle down, but regulating meds and not being able to toilet in appropriate places are two big concerns for us now. The latter is actually why I started looking for blog-sites. Any referals to helpful information will be greatly appreciated. I really don't know my way around the blog.
Now let me address your current concern. I wouldn't have been ready to place George had I not been told that I wouldn't be able to face what is going to be necessary for myself if I still was caring for him. We were very close while he was at home. He was in church three times a week and had wonderful friends there. I had seen that he had all the medical care he needed, shopped with him, attended family events, etc. We were close and he was active. With the difficult adjustment he is experiencing, I definitely have felt guilt, and foolish thoughts of bringing him home have surfaced as well. This just isn't possible. I will be having a stem cell transplant in the coming weeks and will be doing well to care for myself. You are in a similar situation. You must be honest and make a decision that will make it possible for you to get the care needed. I'm finding that my services are needed at the nursing home. He won't let anyone else shave him. No one has learned the denture routine. Hair isn't a priority and nails need cleaning and trimming. Sometimes they have even asked for my assistance in giving him meds. There will be plenty you can do personally for him. George has been so uncooperative that the staff basically leaves him alone. At times he has been combative and they don't want to aggitate him. Three trips to hospital Geri/Psy wards or for a fall have been frustrating, but unstoppable for the family. Even with these difficulties, this has got to work--for his sake--and mine. I hope you will find encouragement from my comments, though they have been very honest and not the rosiest. May God give you wisdom in making your decisions. His plan is best.
Joan, It seems we are never ready, even after we injure ourselves. It is one of the most difficult things to do. I was more lonesome and sad then then when he finally passed away. We all know how strong you are. You have gotten some of us through this, now let us help you. Don went to an ALF. I visited every single day. He got used to it and so did I . It takes time and tears, but you will too. Hugs Carol
Joan...my heart goes out to you, but you are doing the right thing. You can't wreck yourself! My DH is still at home, but I think about placement all the time. I hope the process is smooth. I also agree with Charlotte. You can still do the little things, and your manual laborers can do the things you can't. hang in, and take good care! Hugs!
Thinking so much of you, Joan. You have been through so much with both Sid and your Father. But, you are a survivor and you will see that things are worked out to your good, as well as Sid's. Please take care. We love you here!
I know that this is so hard for you Joan. And Sid seems to be aware of it all, much more than my Dado is.
I was forced to place him due to his 6 week hospital stay, so in some way, it made it "easier" I was working on it anyway. YOU ARE DOING ALL THE RIGHT THINGS, firstly though you have to try your best to be healthy. I too lost 5 pounds in December when this came down.
Please try to eat right and take vitamins, this will probably sound trivial but it has helped me....I now make a shake each morning to build up my strength, half cup yogurt, 2 spoons protein powder, quarter cup almond or regular milk, 1 banana, berries, and a splash of flax oil. It tastes great and honestly has made me feel better and helping my heart and mind too. (Also only 200 calories.)
ANYTHING to build up your health, take some vitamins too if you don't already.
It has been 2 months since Dado was placed, he is settled down now and I am just barely stopped constant crying and sleeping and isolating. Oh Joan please know you are loved, yes, in the end we are alone, but we will always be here for you.
Joan, I was ill just thinking about placing Gord and flatly refused when I was told that he should go directly to a home from the rehab hospital. The psychiatrist told me that I would return to being a wife when I was no longer the only caregiver. I thought he was an idiot. Hindsight is so good. I know that his last 6 months were so hard and had I placed him, he might still be alive and I could have been his wife again.
joan i also agree we do what we must to survive the living with AD. as others have said, you will get thru this and come thru a stronger person for it. it wont be easy we all know how devastating it is to have to come to the placement decisions, but good will come of it along with time. hugs. divvi
Joan I always remember you saying... "do it sooner, rather than later"...looks like it's time now, and it will take all the strength you have. It will at first be a feeling of relief, then a whole lot of mixed emotions will take over, but you are a survivor and you will come through this and be his wife again...doing little things for him and seeing he gets good care.
Joan, I just placed my husband in an AFC home 5 days ago. I put him on their list and less than a month later there was a bed if I wanted it for him. I was at the end of my endurance and it was like a heavy weight was lift off of my shoulders when I drove away from there. I know he is getting the care 24 hrs a day that I couldn't do anymore as I was so exhausted and no longer had any patience because of the exhaustion. The thing I keep thinking about your situation is this, you may both end up in a nursing home if you become disabled. You wouldn't be able to look after Sid if that came to be. I know it feels like you are being selfish by thinking about yourself but it isn't (I am dealing with these emotions) The thing I realized is that there are people there who are up and awake to help him get to the bathroom and lifting him to stand up and walk which was killing my shoulder, arm and back. No good sleep or time for anything but taking care of him. (Also have grandchildren here after school and family business books and finances to take care of) I am 77 and husband is 81, been married for 58 years.
I hope that you can get through this, it is very hard but you will survive because you are a strong person. Just keep telling yourself that you have to stay as healthy as possible for Sid and yourself. We are all praying for you. We are selfish in that we need you to keep leading us through this awful journey. Thank you for being there.
Joan, I am so sorry to hear your story, I wish I had words to comfort you, but, sadly, I do not. I'm sure I can feel a bit of your pain as I am beginning the process of finding a good place for Herb when the time comes, which I believe will be sometime in the next year. The mere thought of what is to come makes me grieve. I can't stand the thought of moving him somewhere apart from me, either. But, I do understand (and so do you) that this disease can and will take both partners if we allow it to. You are so close to being the one who will need to be placed - you must, must listen to what your body is telling you. And, as dorelMl above said, Sid will get much better care than you can give him. And, as my lawyer says all the time, we must be Nancy Regan, be the one to ensure that the care your husband is getting is done well. You can't do that if you are not healthy yourself.
Okay, that's the end of my nagging. Praying for you, my friend.
Quite frankly, Joan, I don't know how you have lasted this long. Don't so many of us say that we waited too long to place our spouses? Good luck with all that lies ahead and do not let yourself get guilted into second guessing your decision. You, too, have a life.
Joan, Today I am thinking of your situation. I am praying that you may have peace and comfort as you embark on a new stage in the care of your DH. May you rest easy in your decision and may you rest in tranquilty knowing that you have done everything humanly possible to provide your dear one. Your Sid, if he was mentally compenent, would not want you suffering with guity. Take care
Joan, (and everyone else facing this) it's hard...but it's just a different version of hard from what you're already doing. You're adapting all the time. With placement, you adapt in a different direction. The psychological hurdle is the worst of it. Then you're just doing things, just like you're doing things now.
Just know and believe that you have done all that any human could possibly have done for their spouse. If Sid was well he would agree with us that your support has been nothing short of truly amazing and you are to be commended for a job well done. It is of a time now for you to rest up and give the job of his primary care to the paid attendants at a facility. You are young yet and obviously strong and somewhat healthy otherwise you could not have kept this up for so long and still be alive. Count your blessings and start to look out for YOU.
I want all of you to know how much your support means to me. Honestly, I don't think I could get through this without your help. There is a lot of web work, Etsy work, taxes, house stuff, insurance - the list is endless - that I need to be doing, but right now, I am letting everything slide, and concentrating on only two things. Getting Sid placed, and letting myself grieve. The placement decision and process, and all of the crying, are taking all of my emotional and physical energy, but I figure that's okay for now. There will be plenty of time later to do everything else.
If I were able to simply write a check, this would be done in 2 weeks. But since there is nothing to back up any check I may write, I need to go through the Medicaid process. Since Sid is already on Medicaid Diversion, which means that he gets services at home and in the community (Day Care; an aide to come to the house to shower him), it is a matter of applying to switch to NH Medicaid - a lot less complicated because he's already on Medicaid, but it still takes a lot of paperwork, and a lot of explanation so I know what I'm doing.
This is a horror. It really is making me sick to my stomach. Besides my back hurting all of the time, my heart is in unrelenting pain.
But, as I said, and I mean it from the bottom of my broken heart, I thank all of you for your kind words. You are a huge help to me during this horrific time.
Joan: How could we all not support you when you have done so much for all of us with this wonderful blog. Hope you can get the mountain of paper work done and get the move completed so you can get the rest you need. Thank care. We admire you so much.
You will make it through the placement process, but take extra good care of yourself along the way. Take comfort in knowing your many friends on your blog will continue to be here for you.
Horror is an apt description Joan. Yes, let everything else slide. I know it isn't good, but I wasn't able to function enough to even pay the bills. After the cable got shut off I handed over my checkbook to my sister until I could simply think again. You will be thankful for the busy work later ((Hugs))
Charlotte, I have been thinking about what you wrote for a couple of days, I love it! "Joan - keep telling yourself when he is placed you can do the easy things for him and let the paid help do all the heavy jobs. That is the truth - you can be his caregiver and they are your manual laborers."
So often I hear people say that when you place your spouse you are no longer the caregiver. While that may be true for them, it isn't for me, nor does it have to be for you. Though it is true I am not the 24/7 caregiver now, I am still his primary caregiver. You can do as little or as much as you choose. I go every day, often twice a day and I am very much involved in his care. Both physically and more importantly emotionally.
I wish I had heard Charlotte's words 4 years ago! At the time I felt I was letting Lynn down, that I had given up, the world's worst failure and the guilt was eating me alive. Had I been able to think along the lines of Charlotte's advice I might have been in a better frame of mind. We often say we are soldiers in a war. Well, any good General knows when it's time to call in the troops. That is what you are doing Joan. You will still be in charge, but you will have a whole fleet of troops to help now.
I know it is beyond difficult, know that we are here for you. Love and ((hugs))
When I went to last weeks Az support group, I made a comment about being the "secondary" caregiver. Well, the leader jumped right in and said no no no we are always the Primary Caregiver, and never forget it.
It has been 2 months now since Dado was placed. Joan, as he is getting great care, and has settled down, I am now starting to see the light, and the craziness of feeling ANY guilt whatsoever. I cannot believe I fought that war as well as I did, even though it all happened so fast in a 2 year span, it was so intense. YOU WILL NOT GET WELL if you do not do this Joan, I am sorry if this sounds harsh, but I think you know it anyway. I know it is your heart that is the hardest thing to deal with.
Joan: It breaks my heart to read your blog inre placement of Sid. These were my exact circumstances 3 yrs ago when my two children arranged a meeting with my wife's dr. There were four people in the room: the dr, my daughter and my son. The vote was three to one that it was time (yes past time) for placement. Mine was the only dissenting vote, but, all of a sudden I felt a sense of relief because it was no longer my decision. It had been made for me and I knew deep down that they were right. It happened soon thereafter and it was the right thing to do at the right time to do it.
I now know that I took care of my wife for almost a year longer that I should have. But, I would do it all over again if I could.
Joan, DH has been in placement for almost 4 years now and it literally saved my life. At first the adjustment was very tough and I had to move him 4 times until I found the right facility. (Picking a place under duress is not the way to go) I am so happy to hear that you are at least getting ready to deal with this. I wish I could vanish any guilt or sadness you may have but as it did for me, it goes away a little each day as you get your life back. Now I can visit DH and actually feel better after a visit as I know he is cared for and safe, AND so am I. much love, Maggie
Joan I am usually silent when it comes to discussions of my own feelings during the journey we all experience, your blog touched me deeply as I went through the same exact emotions you are now experiencing. I don't usually post of things my husband did or did not do as it was too painful for me,
If I can help you any by telling you that you are doing the right thing for both you and Sid then I want to speak out.
You have to consider the fact that by placing Sid he will be in a safe place if anything happens to your health. 6 months after I placed my husband I had multiple blood clots in both lungs, was in intensive care and almost died, had he not been in the facility it would have been an emergency placement and we all know that is never a good thing.
Keep in mind you will still be caring for Sid but just in a different location.
The disease is such a long one in many instances that it can and does take the caregiver before it takes the loved one. You are placing him because you love him.
we were in the 2nd month of a 13 year journey when ours finally ended and I woke up and found myself an old woman and wondered where the time had gone. It does not stand still.
The Medicaid process will be detailed but you can do it. Just give the case worker what she asks for and only when it is asked for. So many times people take in loads of information that is not needed but because it is brought in the worker has to go through all of it and this slows down the process.
I do know that you have always been here to help others with financial, SS, and Medicaid issues, but of course I noticed that you never discussed your own personal pain. Maybe that is why your post means so much to me. Last week was one of the worst I have had emotionally since this nightmare started, and next week does not look like it's going to be any better. Thank you, Jane, thank you everyone for your support. I am finding that I really need it and depend upon it.
I have been deeply depressed and am taking time away from my web work and everything else to rest and play stupid mindless games on my Kindle Fire. It apparently was what I needed to do, because this morning I came up with another idea on where and how to place Sid and how to pay for it. Believe me, even when there is legitimate need, as there is in our case, Medicaid is not the answer everyone thinks it is. Sid has been on Medicaid since last September. I do not want to go off topic here and get into a Medicaid discussion. One of these days, when I feel strong enough, I will write a blog about Medicaid. I just want everyone to know that your support is helping to get me through this.
Hi, Joan..glad you are taking care of you....when you can squeeze that in your thinking will be clearer and confidence in your decisions will feel more comfortable. WE are all in your cheering section..your "peanuts" are in the gallery to support you in any way we can...You da girl!