I hope you all had a nice Easter. Ours was pleasant, but stressful too. We went to church in the morning, which we never really do, but I thought it would be nice for the kids to experience going to church on Easter and it would help them understand what Easter really is. The kids did well, even the 2 year old. He sat through about half of it, then his brothers took him to a playroom and DH and I sat through the rest. After the service, a lady introduced herself and started chatting with us. She was very nice, but asked a lot of questions, and I realized I was answering for DH. He couldn't even tell her where he used to work. She probably wondered "Why does this woman have to answer for her husband, can't she let him speak for himself?" Oh well, I was glad we got through that.
I should have quit while I was ahead though. We went to dinner in the afternoon, all of us, big mistake!! The 2 year old could not sit still, kept climbing under the table, which I was able to accept (nice restaurant, not a mess down there!) but then he kept going and wanted to run off. I hardly ever take him to restaurants but I thought I'd try since it was Easter. Anyways, I was so obviously stressed, yelling at my 9 year old at one point. A woman at the next table glared at me, and I started crying right there at the table. Part of me wanted to slap her and part of me wanted to crawl into a hole and not come out. We finished the meal and slunk out. I was soooo glad to get out of there!!
Then, glutton for punishment that I am, I drove to the airport to let the kids watch the planes take off, something I used to do with my family on Easter as a kid (cheap entertainment I guess!) It was a quiet day I guess, so they never got to see a plane take off from the runway. We went to the bathroom on the way out. I took all 3 boys into the ladies room with me and DH kept trying to follow. (it's one of those bathrooms that doesn't have a door that closes, just a big entrance.) I kept telling him this is the ladies room, you can't come in. A woman walked in and made a face. I told her "he's ill." Then I started sobbing in the bathroom stall for all to hear. arrrrgh!
All I could think about at the airport was how DH used to travel all over the country, this airport was almost his home away from home. Now he can't even figure out not to go into the ladies room. And I guess I was also thinking of how excited I was to do this as a kid, and how my life is so different than I would have pictured it back then. Self-pity party I guess.
Anyways, we got through the day and the kids managed to have some enjoyment from it. That's what matters I guess.
I'm just so struck by how DH seems to be deteriorating week by week now, not even month by month anymore. Maybe I'm oversensitive to it, but it seems like we can't even have a coherent conversation anymore. I kept thinking yesterday that he's slipping away, going to a place where I won't be able to reach him anymore. Sometimes the grief is overwhelming.
Sorry to bring you down on a Monday morning!! I hope the week goes well for us all.
Sorry about your day Kelly...some days it does just hit you in a big fat way, and it sounds like you had one of those.
I have a book called "Learning to Speak Alzheimer's," by Joanne Koenig Coste. The reason I thought of this is that her husband had AD at a time when her children were small and she had a toddler. The book isn't really about that--how to deal with children and a sick spouse at the same time--it's really about generally how to handle a person with AD, but certainly she is someone who's been where you are.
Sometimes I suppose I'm "lucky" (?) that my kids are old enough to deal with it, and my husband seems to be on a very slow decline, so I sorta figure I'll be dealing with this for a long long time.
I just want to add that I completely understand how you feel when you're dealing with a really difficult situation and people are making weird disapproving faces at you (because they really have no idea what's going on.) My daughter, at 12, was very incapacitated with obsessive-compulsive disorder (wonderful now at 21, thankfully,) and at the same time my somewhat oddball, ADD, 6 year old kid was having some trouble conforming to the expectations of his church choir lady (who had 2 very perfect prodigies, naturally,) and I recall feeling quite ready to pop her one on a couple of occasions when she looked at me askance because I didn't seem to keep my parenting ship quite up to her standards.
Kelly, my heart aches for you. It's too much for you to handle with young children. My husband is at about the same stage but my children are grown. We have no income except our retirement so I thought a NH was not an option when the time comes that I can't take care of him anymore. So I felt trapped and very anxious about the future. Then I discovered that because he was in service during the Korean Conflict (any wartime service is eligible), he was eligible for the State War Veterans Home which offers free room and board. This is not a VA facility but is run by the State. I assume our state isn't the only state to do this. The facility has a 120-bed ambulatory Alzheimer's unit. They have a great rec hall with bowling, swimming, etc. The residents of the town take them to barbecues, ball games, etc. Anyway, so far I have been able to take care of DH myself but if the time comes, I'm so glad I have an option. For the sake of your children, you need to see if you have options. Just knowing you have options makes things a little easier.
I also liked the idea one poster shared. She has a business-size card that says "My spouse has Alzheimer's Disease. I appreciate, in advance, your understanding and patience." I can make up mine on my computer using Avery business card stock. Maybe others can do the same thing. Or maybe you can order them from some Alzheimer's site or your local print shop. I'm going to always carry some and have them in my hand at restaurants, etc.
I am so sorry for what you are going through. I know the pain of watching the husband you love so desperately, decline. There are often months of plateaus, then a big dip. It is emotionally difficult enough, but with such young children, I cannot imagine.
The Alzheimer's Association has those cards - call and ask if they can send you some. 1-800-272-3900
Kelly; It was wonderful of you to try to give your children the kind of Easter you remember.I'm sure they enjoyed the day and you made memories for them. I can not imagine having young children and facing this.I will be keeping you in prayer. I understand that sometimes the grief is overwhelming.I think sometimes it is made harder when we have been out experiencing the "outside world". I know that for me it only takes a moment to view another couple smile or interact in a completely natural way, and I am instantly overwhelmed with the contrast between them and our life. I do want you to know that although you sense him slipping away there will still be things you can find a certain joy in doing together. They won't be the same things as before but I truely wish you lots of peaceful, times ahead. Please try to give yourself a treat this week. You deserve it .....
Laurie is right. There still will be things you can enjoy together. This morning my wife and I took a walk around the retirement village we live in. The sun was bright, but still no sign of spring - that won't come until May. Although this walk was no where near what we used to do, it still gave her some pleasure, which made me happy. Conversation is very one-sided, but at least she listens, which gives me a chance to think out loud about affairs of the world.
Although each of us is having a different experience, we are all feeling the same grief, frustration, and loss of companionship. Thanks for all your comments.
Feeling overwhelmed while caring for a spouse with AD is a constant factor these days. I have all grown married kids on both our sides and we are in retirement phase before the AD hit 10yrs ago. its been coping on a daily basis since. even with just us two and our dogs, the situation is so fustrating. having to care for young children along with an AD spouse must be just so overwhelming and takes a very strong special person to see it thru each day. They say the Lord doesnt put more on your shoulders than you can bear, i wonder sometimes how the limit is determined. My prayers are with all of you but especially with those of you with children still at home who have the double burden on your shoulders. God bless -Divvi
I identify with all of you. The emotion of GRIEF fits many a situation when any special occasions come up. We were invited to Sis' (open invite so I would not stress about it). Didn't go. Cold and rainy here, and DH woulda driven all of us insane on the 1+ hour drive. Sis has a new home I haven't seen yet, and I know it isn't huge. Her five grandkids (all under 7) would be there. Because of weather everyone would be indoors. Not good circumstances for DH. Crowds, drives, and bad weather are all triggers for DH to get anxious.
Sis and I both knew darn well it would take a miracle for us to come for Easter. Even so, when I picked up the phone Sunday a.m. to wish her Happy Easter, and confirm we weren't coming, I was blindsided by the sudden grief as I heard myself giving reasons for not coming. Again the realization sets in that we have missed so much as a family. I know my kids grieve for the loss of celebration memories with extended family. Unlike their peers, our family doesn't spontaneously do things, nor easily make "definite" plans to go places. They are teens now, so it's not like I can promise to make up childhood memories. One turns 16 next month, and the other 18 in the fall.
I know this sounds really bad, but it is something my mind goes to: I fantasize about life AFTER DH, where I can freely try to make up childhood memories, with my children as young adults. And then the guilty feelings set in a little deeper.
I to pray for you and your family.My children are grown and my grandchildren are teenagers so I can't imagine having to cope with raising young children and coping with AD 24/7. I do agree with divvi that God won't put more on us than we can bear. I believe every plan is a perfect plan so therfore there has got to be sunshine and rainbows at the end of our dark tunnels. GOD BLESS
One of my goals of this website is for spouses to be able to talk freely with one another about issues they would never voice to someone else, because no one else could ever possibly understand.
I can guarantee you that you are not the only spouse who, as you stated, "fantasize about life AFTER DH, where I can freely try to make up childhood memories, with my children as young adults. And then the guilty feelings set in a little deeper."
At one point or another in this AD journey, especially as their LO's "slip away" farther and farther, many spouses DO think ahead to life "after AD". You do not have to feel guilty about it. You just gave me an idea for a blog. I'll work on it.
It seems so many who share in these discussions are YOUNG and having to deal with AD and children and working. My husband is 83 and I will soon be 68. We are definitely retired so this is all I center on these days. I don't think I even knew what AD was when I was in my 30's so I feel deeply for all of you in this spot. Since we are being honest, I am not one of those who believes 'the Lord doesn't put more on your shoulders than you can bear' - I think believing that would make me feel even more guitly for the times in my life I have completely and utterly failed. But, I'm an agnostic, so faith isn't a part of my life system. Oh my, in the months before my previous spouse died I fantasized about life after cancer. That certainly didn't include falling in love with someone who would be diagnosed with AD after 6 years of marriage. A part of that fantasy for me these days is knowing my DH would not want to linger in stage 6 and 7, so I fantisize he can die of something else before then.
I share that last part of your fantasy frand. Makes me wonder sometimes...I'm now treating him for high bp and high cholesterol. He's roughly stage 4. Decent quality of life. Of course this is what we should do... but wouldn't almost anyone rather die swiftly of a vascular event than linger in the later stages of AD? Weird ethical questions you never imagined considering.
We had gone to our high school reunion, we were classmates, and I thought I was hiding DH's AD fairly well. Sometime later, another classmate asked if I'd seen the reunion videos, and I had not, so she showed them to me. Then I saw that when we were being interviewed, I was speaking for both of us--whenever the interviewer asked my DH something, I answered. It's the way things had become and I never knew how much I had adapted, how much my personality was changing because of what was happening to him.
It takes a long time for some of us to realize just what is happening, how we can no longer do the things we did just because our LO looks good that day, seems agreeable and cooperative. Then it falls apart and I simply stopped going anywhere--no weddings, no parties--nothing--and my life became much easier. People would say 'why can't you come?' and I'd make something up because they just did not understand, you have to be where you are 24/7 to understand. I learned to lie w/ease, thought about the future alone, never felt guilty, didn't try to explain. After all, I was not responsible for what happened. AD controlled us both and I did whatever necessary to keep our lives as calm and serene as possible--the rest of the world--holidays, events, birthdays, people, time, days--meant nothing to him, so why should I bother & force the issue? True, our children were adults, g'children were teen-agers, so in many ways it was easier. For those of you w/children at home, it has to be a different matter and so much harder. Bless us all.
Regarding doing all the talking. I am really guilty of that. I find pressure to keep talking because I don't want my DH to say something like, "where are we", "what do all these people do", "what State is this", "what is the name of this place","what is this?"(brocolli, or whatever). It is exhausting and perhaps not the best way to handle social situations with strangers...
About 6 months ago I started doing all of the stuff in restaurants. He had been having problems with that for a very long time, but at first my daughter and I took it for granted that he just needed hearing aids. He has stopped wearing them. Although he can't hear well without them, they aren't the problem. His dementia is.
As for hoping that he has a compasionate end and that he dies of one of the other terminal illnesses he has, I am guilty. I dread the long drawn out end that I am almost certainly going to experience.
Our social life has basically ended already. Like everyone else here, it just got too hard. He really doesn't mind. We have a few neighbors, not really friends except in one or two cases, who know what is going on and can handle it.
Frand, I am 68 and an agnostic also. I'm also the one whose husband has multiple myeloma as your former husband did. Kind of a coincidence, huh. Just wanted you to know you have a sister out there.
Emily, our situation is almost identical. bp, cholosterol, heart disease, stage four going into 5. I too hope that we don't go the whole AD route. Frand and Starling ,we have the same situation re restaurants, hearing aids,social life.I'm doing the same things you are.
It is such a good feeling to have friends when some days I feel as if I am a shut in! My DH is so worn out and sleeping so much I decided to email his AD doctor and see if she might want to suggest something. I'm not sure this is just AD and PD. I also asked her if he had been tested for normal pressure hydrocephalus, something from another discussion here, so will see what she says. Sometimes I have a hard time figuring out how to entertain myself. I finally cut out some placemats to machine quilt for my oldest son, borrowed my cousin's sewing machine and now can't get the tension right on the bobbin. (I HATE looking at those instructions with diagrams that look nothing like the machine with which they came.) Hank saw I was frustrated and said, "Is there anything I can do to be helpful?" Wouldn't that be nice! He has spent hours reading the little 6 page instruction booklet that came with his razor - over and over again and it is nothing like the directions for this darn machine!
Just a quick thought for today...'cause I have to get ready for work. Joan, I love this site. Because every single person who posts has actually "walked in my shoes" or do we walk in each others shoes? Anyway, something in every post touches me. A sentence , a thought and I realize that I am not alone. Others are feeling what I am feeling and they understand. Frand when I read about your experience with the razor. I had to laugh . My LO wants to get quotes for new car insurance because we are being cheated, but he can't remember how to use the cell phone. And Bettyhere your post describes our life perfectly... He is happy in our world and for now our world is what matter. Just wanted to thank you all
I second that. Thank you all for responding. I guess I touched on something we can all relate to. It is so helpful to know I'm not alone in my feelings. It is so hard to go through this with young kids. But in a way, I feel like they keep me going. I don't really have a choice but to get up each day even though it would be easier to just stay in bed and pull the covers over my head. It's ironic to me that my whole life growing up, I was so sheltered. I was the youngest, and my parents basically did everything for me. Now I'm the one taking care of everyone, and I'm lost. Ironic or crazy, I'm not sure which.
Anyways, it helps to have all your support. I'm truly grateful.