My Saving Graces

Brad and Frances showing some sibling love. May 2014.

Brad and Frances showing some sibling love. May 2014.

I have been feeling a bit overwhelmed lately. There are many parts of life that can stress a person out and at any given time period those stresses can correlate together to cause anxiety and trepidation of mass proportions. I believe that I am currently smack dab in the middle of one of these rare, but inevitable collisions of foreboding uneasiness.

My body is in a constant state of tenseness. But I am not sure if it is physical tenseness and unease or mental. It is always mental, so I will go with that. But then my physical self is under attack. I am forgetting mundane things. I am constantly feeling as if I am in a rush. A rush to be somewhere. A rush to remember something I have forgotten. A rush to have a plan. A rush to be ready for whatever is coming at us next. I can’t relax. I feel a weight on my chest that doesn’t shake. Even if I am not particularly stressed at that very moment. Sometimes, while I am just driving down the road, I can feel as if a heavy load has been placed on my lungs and I am fighting the tightness that surrounds my rib cage and wondering what triggered this unnecessary reminder of my current predicament.

There have been a couple of realizations that have crept into my viewfinder recently. I have realized that at some point in the future, I will have to watch as my children cry, scream, rebel and recoil at the fact they have lost their father. Their parent. Someone who can’t be replaced. Someone to count on. Someone who was there for them from the very beginning. It dawned on me one day that I was going to be the one to hug them (or try to), to listen and to just let them cry. I was watching a movie where the mother was killed. As I watched the father and daughter on the screen, I could only see my two precious kids going through the same process. My mourning will have to wait. Yet, I understand that I have been mourning Jim since the day we first found out he was cursed with this insidious disease.

Another realization: I will have to determine when Jim can’t be left alone. Not just at home. Anywhere. Right now I sometimes drop him off with the kids to practice. He enjoys getting out of the house and loves watching them play ball. But I realized that at some point, I will be dropping him off and expecting the other parents at the field to keep an eye on him or to “watch” him. Not yet, but sometime soon or sometime in the near future. Who knows when? Then I will be forced to keep him home more, or hire someone to be with him. It all gets so complicated.

I realized that I don’t make enough to pay for someone to watch him and pay our regular bills.

I figured out that I will be alone for a very long time. I already feel alone 95% of the time. I am not a loner. I am a people person. It has been so difficult to lose my conversation companion. I am desperate for a connection, yet I have no idea when or if I will ever have one again.

I clearly see Jim progressing. Our friends see it. The kids see it. I sometimes wish we could speed the process up because it feels like torture. Pure torture. Like a single water drop hitting your forehead and then sliding across your face, slowly and unwavering and your hands tied and unable to wipe away the uncomfortable sensation. And as quickly as those thoughts enter my mind, a wave of guilt, unbelievable guilt and shame overcome me.

So, here I am. Wondering aloud how long our family will endure this Hell. How do I stop the constant state of self loathing and complete physical and mental overload I feel 24/7?

Right now, the only thing that really keeps me moving forward, getting out of bed, focusing on anything positive are Frances and Brad. What else do I have? Without them, I would have less worry and would be able to handle our situation in a much different manor. Yet, they are my saving grace. They are my reason for fighting. They are my mitigating comfort in life. It seems that I am in a constant state of capriciousness. Only time will tell how the final scene plays out.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (13)

13 Responses to “My Saving Graces”

  1. Shirley says:

    Karen once again you are just a step behind us! Wayne has declined to the point I am looking for that answer of what to do. And like you the finances are such that we make just too much to get help and not enough to survive. We have also gone to using depends. So tough! And I miss Wayne! His shell is still here pacing through the house but I honestly feel he has passed in ahead and his body is just waiting for the time to go! Occasionally I see signs he is still here but those times are further and further apart! Thanks for sharing your world for it helps remind the rest of us we aren’t going crazy!!!

  2. Phyllis Gallagher says:

    My husband has had dementia since 2008, i can’t leave him alone anymore. I thank god his daughters are grown but its still heartbreaking. he is only 55. i wish you the best but letting you know we share the same thoughts

  3. Anne says:

    Karen, you are showing many of the signs of clinical depression.That heavy weight on your heart is a sure sign–I know it is for me. Please see you doctor and tell him all of your symptoms and feelings. You are a good candidate for an antidepressant, and it would do you a world of good. You need to stay on top of things without having to cope with severe depression.

  4. Rita Hatke says:

    Oh how I relate.

  5. Ann says:

    I feel for you Karen and understand that state having accompanied my parents on the roller coaster of this horrible illness.Faith is what keeps me going and refreshes me when I need it…we can’t carry it all on our shoulders.We need also to build community around families experiencing this to support one another.Thoughts and prayers are with you!

  6. LLS says:

    It is like water boarding. You said it. We hear you. You and your children will cry. But it WILL be okay. Somehow, God will find a way for you all and it will work out just the way it is supposed to. Easy to say. Hard to accept. I know.

  7. Lee Ann says:

    You are sounding quite overwhelmed. I can understand how difficult things are, you’re having to do everything for everybody. But you need to remember that you can’t care for anybody else if you can’t take care of yourself. You need to get away once in awhile, and realize you cannot be perfect for everyone. Nobody ever got that accomplished. Just because its not perfect, doesn’t mean its not good enough. It is good enough. You have some challenges ahead of you, I know. Your children will be doing the same thing you are doing, grieving before its over, knowing what is coming, and they will get through it. Sad, I know. But it happens to the best of us. We all lose someone we love. Whether its overnight, in a car accident, or because of Alz Disease, We do the best we can and keep on going, without kicking yourself over the imperfections that you can’t fix fast enough before another one comes along.

    I don’t know if you joined any support group. But they are wonderful for helping with the stress and the grief. Maybe seeing a personal therapist would be helpful. They can help you get through things in 1,2,3 order, help you get things into categories.

    Be good to yourself. You are doing the best anybody could ask for. It’d be easier to be perfect if you had a couple of million in the bank, didn’t have to work, had round the clock care and had to sit by the pool. But sadly, it doesn’t work that way for any of us .

    It’ll get better, then one step back, then two steps forward. Just love each other as much as possible. It’ll be allright.

  8. Jim Jeffries says:

    Lee Ann’s comment is one I know personally. My daughter suggested I take a respite, just as I was losing it and still thinking I can do this. I couldn’t admit it. So I did take that first respite. It has made it possible to continue caring for my wife going on 10 years of younger onset AlsD.

  9. Andrea Spencer says:

    I guess we are a bit further along. My husband can’t tell time or figure out how to enter a two digit number in the remote. He has a lot of trouble communicating and understanding what I say. He still knows who we all are though, so that is a plus. He is 49. Two teens at home. I totally understand trying to keep it together and proceed as normal as possible. (It’s my normal coping mechanism) But, I have been fooling myself. Our 17 year old just ran away 2 days ago. I’ve been so consumed with working fulltime and trying to go through normal routines that I have been missing what is going on with her. Watch carefully for warning signs from your kids of their need to talk to someone other than you. We as adults are struggling with the thoughts and feelings you have mentioned. Imagine how difficult this must be for the children.

  10. Michelle Fox says:

    Karen, I don’t know what to say. I read the comments and agree but easier said than done. You can’t let go of Jim, but I think you have to plan for a life where he does not play an active role. He will, I assume, live in a facility eventually and he will adjust and actually have a new life there. You have to focus on you and the kids. I know that sounds terrible but it is the honest truth….life goes on after, long after the disease has progressed to no return. You will know when the time has come. I did…it was hard but Mom was happy. I still saw her everyday but she had a new life with friends in a community where she fit in….I have no regrets, I just miss her so, now that she is gone. Prayers, always <3

  11. Jeri says:

    I read all the comments and everyone is right. But some options aren’t available for everyone. In my small town there are no support groups and a therapist costs money. What about those that have no insurance and live on disability and social security and can’t afford adult day care for their loved ones? All of these worries on top of dealing with early onset Alzheimers is more than anyone should have to endure. Some days are just tougher than others, and Karen, I’m hoping today is one of the better ones for you.

  12. Lee Ann says:

    I think Karen said awhile back that she’d gone to a support group. Every facility I have worked at has had some kind of support group for resident’s families and anyone else that wants to go. Sure, therapy can be expensive, but there are places that go by income, even a preacher or a priest can take some time to talk. If one has no insurance and the people that live on disabilty can use medicaid for respite day care or even residential respite care for a few days. There are ways to work these out. I would suggest talking to the social worker at a nursing home near her home. Someone that knows the ropes and how these things are done.

    I think she is doing great. Hang in there.

  13. Chris says:

    Last year this time, my husband lost his car keys and I was told that he should not be left alone. The car keys were tough enough, but taking him to adult day care was next to impossible. He wouldn’t go! Plain and simple.

    I found a different day care that only takes memory care adults. THAT made all the difference. My DH began to feel a part of something again.

    He is pretty nonverbal now, but still wants to interact with others and processes information VERY slowly. This is the perfect environment. They keep everyone engaged. He has a group of men that he “hangs” with. They are interacting. I’m not sure how much each is understanding the other, but they all seem to be happy when they are together.

    Yes, it costs money. Yes, we’ve had to cut costs in other areas to make this happen. But I no longer have to worry about the local police calling from my home because my husband wandered off and asked a stranger for a ride home and THEY called the police.

    I can now go to work and know that he is safe and that I have 8 hours to concentrate on my job without worrying about him. I can’t begin to tell you the energy that I have because for 8 hours every week day, I don’t have to worry about what he’s doing, where he is and how quickly I will have to dash out of my office.

    And because I feel he is appropriately placed at this time, I’m not as frightened for the next step. Because I know that down the road he will need 24/7 care and I will not be able to do that by myself. So, I’ve done that homework and we are on the list at 3 facilities just in case he needs them sooner rather than later.

    So, yes, with some therapy for me, some support groups, a knowledgeable social worker, some good anti-depressants and my doctor who cared enough to sit me down and tell me that all of this was too much for me to handle alone, we now have a plan. My family has some sanity and I am emotionally available for my husband and son. And THAT is priceless!

    Will the plan work? Won’t know until the day we need to implement it, but at least I have done my homework and am as prepared as I can be to face the next step down the road. Now, I can enjoy where we are-in the moment.

    I can only suggest that you take some time for you, Karen-if only a day or two of respite care. You might be surprised how it might help you to re-charge. You’ve got to have enough energy to be emotionally available for all of those you care about. You can only do that if you have the time to recharge.

    Rest up, you have a lot of people depending on you. :^)

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