The Long Road Ahead

[Jo6]

Hello to you all. I have missed everybody. There comes a time when traveling this road we simply run out of things to say. It's not that I think I know everything, far from that. I'm bone weary and feel so out of sorts. I know all too well the suffering you all are going through.

I want to help others, but that seems to have flown away too. I think K is here also or worse. He doesn't say that, but he is exhausted all the time and feels he is letting his Mom down. No way is he letting her down! I think he may be the only one of us MIL appears to know. He can just walk in the room and she will settle down.

I'm no help to him either. He did thank me one day, just out of the blue he tells me he appreciates the fact that I do not nag at him for going to the NH. I understood why he said that. He goes early so he can give her some fluids, when she will take them. Her fluids are getting smaller and far between but he is there, just in case. I can't go this early, he knows this, but the times I've asked him if he would go a little later so I could go too he just says " I will see how it goes". I've said no more, he knows I want to go see her, but it would be taking "his" time with her. I may be weird, but I understand him and I take no offence. He has started telling me little things, I don't interrupt, I just try to be some comfort to him. I'm not sure I help him, but I do try.

Yesterday he told me the Hospice nurse had finally noticed his Mom was suffering from Sleep Apnea. I did ask him about that and what he meant. He said she was not breathing for several seconds, but she wasn't ASLEEP. He said she had been doing this, but the Nurse didn't catch on until yesterday!! I also asked him if that was how the nurse explained it, in those same words and he said no, but I know what Sleep Apnea is.

There is a name for this but for the life of me I can not remember it. Tootsie, do you know? I'm not too good at explaining. I'm troubled that he said all of this in such an odd fashion. Maybe I've just lost what little mind I have left.

I know when Mom was dying she was doing this. It was only 2 or 3 days before she did pass. MIL has done this whole journey different from anybody I had known did it, but everybody is different.

Please know that I care for all you precious people and also your Loved Ones.
My love, Jo

[Tootsie]

Hi Jo, I am always glad to see a post from you. I do understand what you mean by being so exhausted, in every sense of the word. Be prepared for the sense of guilt you feel for this emotion also. I always felt as if there was no way I could be exhausted and tired because I had relinquished the daily care of my mother to the residential care home. It was just the constant worry and concern, wondering if I REALLY was doing all that I could to meet her needs.

Of course, this is all really hogwash. The reality is, that I DID do everything that I was capable of. At that point, I had to admit, that my biggest problem was that it is hard for me to admit that I can't do something. I simply could no longer care for my mother in my own home.

The type of respirations that you describe are called Cheyne-Stokes. It is varying periods, of no breathing at all, that gradually increase in length until death occurs. It is characteristic of all terminal episodes, no matter what the ultimate cause of death. Perhaps this is the beginning of the end? Cheerio.

[joy]

It is good to hear from you Jo, I think of you often and hope you know we all care how you are doing. Much love to you and yours.

[Jo6]

hello joy and Tootsie. Hope you are all well as possible. Jennifer, I think of you often, all the problems you still have to deal with. Take care of your self.:)
Tootsie, you remember things from long ago, I wish I could get my thinking hat to stay on! I am amazed at the answers to many of these questions

I think they have made much progress in ways to find out about Alzheimer's D. I think I understood what you said about "making much progress" in helping those that are caregivers.

When MIL moved in with us I was desperate , not knowing how the heck I was going to help her as well as keep myself. Oh boy, I sure did need answers and how to's and what not to do.:eek:

What just took me aback was my first call to an "Alzheimer's help group"? It seems they knew nothing about Alz. She told me to get in touch with the "National Help", that they had nothing like that around even close to me. She sure wasn't helpful!!:mad: I live in SC and she wanted me to get involved with groups in New York and such!!

I was frantic and it was taking away from what little help I had found. I finally goggled Alzheimer's and low and behold, it dumped me right here on MGH/BT. MIL is with drawn, appears to be some place far away.

My self? well still hunting for things I can do for my hand and arm. I am so depressed, I've got to get out of the depression. Y'all don't have to read all these ramblings. It just helps some days to get things off my chest.

take care all----Jo

[Dented Angel/Lisa]

Jo, I understand your frustration. My father has Alzheimer's and is still residing at home with my mother. He is more and more confused, angry, he's right and everyone else is wrong. He won't take his meds consistently (heart, b/p, cholesterol and "memory pills"), he gets lost when he goes outside, he is so pitiful. It breaks my heart and I don't know what to do. He remembers who I am, but not my name....

It's like my Daddy is gone and all that is left is this shell of a man who has to exist in his world. Sadly, he has times when he is quite aware of his memory loss and that's even worse.

I wish you and yours luck and love with your situation.

Lisa

[joy]

{HUGS} Jo. It is amazing how a body can function when you think it can't. And so scary how you think your own is doing okay but it's not when it is needed to most. I hope you will visit here as often as you can. Just know I do think about you often but that's often as far as I go after a short prayer for things to be as good as possible under the circumstances.

[Jo6]

Jo6, you make me smile. Boy did I need one today! I am happy we have this board. Thank you all for picking up when I needed comfort. Hope you will stay awhile. I keep getting dumped, but you are stilling here. Thats good. I need a touch of a human hand.

[Tootsie]

Lisa, what is the basic problem with your Dad taking his medication? Does your mother help him with it? Have you considered that he can't remember HOW to swallow pills? Have you spoken with a pharmacist to see if your Mom can crush the pills and put them in peanut butter or applesauce? Sometimes if the pills are smeared with butter or margarine, they are slippery and go down more easily.

Do you have his name and phone number in his shoes, on his jackets, clothes, or something in his pockets that identifies him? Does he wear a Medical bracelet that gives basic information to civic safety officers? Have you contacted the local police department and given them a flier with his picture, name, and address so if he is found wandering they can bring him home?

When he insists he is right, simply agree with him. There is no point in arguing and only aggravates his blood pressure and makes him more apprehensive about the losses he has sustained.

Unfortunately, many times the caregiver sees the Alzheimer's patient as the same person they have always been and gets caught up in the power struggles that are part of every marriage. I wonder if that is part of the problem with your Mom and Dad? Cheerio.

[Jo6]

I have missed all of you and am glad to see you. Ya'll have no idea how I lean on the words of you love ones, the caregivers. Lisa, I think of you often. Joy, you too.;) Then there is Tootsie, we all love you my dear!;)

Those I haven't named, its just this forgetful piece of a mind I may have left.
One of my brothers died last Monday. It was hard even though he has been mostly been bedridden for some years. I wasn't as close to him as I was my dear brother Ben that died a couple of years ago. yet he was my brother and I still loved him. I have only 1 brother left. I love him so much, it he goes before me I will surely die too. I have 3 sisters, we just spent a week in the Mountains, all tring to get our feeling and grief put in the right places. Please say a word of prayer for us, please.

MIL is still here, but actually not. Those that have lost our LO know how this feels. K is , well how do I say he is sinking and needs a life raft, but I don't seem to be it. I just want him to deal with his mom passing, but it hasn't happened. He is grieving himself to death. MIL does't appear to be in pain, doesn't seem to know she is in the world, she doesn't speak at all.

Tootsie, thanks for the Cheny-Stokes answer I ask you. She is doing this more and more. May God hold her in his hands. Take care all. Jeannie, I think of you often too. You take care of Jeannie too:)

I love you all, Jo

[tic chick]

jo, *bunch

i am so sorry about the death of your brother. i will definitely say a prayer for your family.

thank you for thinking about me, too. i believe all the people here who think of me and answer my posts give me energy and courage to go on. i know we can't change the fact that our loved ones are ill and dying. but, we can appreciate the love and support we get from people who reach out to us.

thank you for being one of those people, jo.

thank you for sharing and caring,
jeannie

[Tootsie]

Jo, I am sorry to hear about the loss of your brothers. I am at that time of life when I have only one cousin left who knew me before I met my husband. We live over 3,000 miles apart but communicate by email occasionally. She is not a good correspondent unfortunately. How very lucky you are to have sisters to share the grief and loss. Mine died before my mother did.

There are other cousins, but we rarely saw them and were such a large family that they have all they can handle keeping in touch with one another.

I am sorry to hear that you husband is still grieving so severely over his Mom's deteriorating condition. As you know, there is nothing anyone can do except see that she is cared for as well as possible during these final days. I think of you often and pray for you to have support and strength. Cheerio.

[joy]

Just thinking about you Jo.

[Jo6]

Tootsie, thank you for you love and kindness. Yes, I've been blessed with family, but they are going one by one, feels so fast these days. I will be thankful for what I have left. You girls have been so kind to me. I want to give to others as I have received.

K is still having a hard time. Although he has family they all resent him because he has POA, also Medical P. He would gladly give this to any of them, but it does take some doing to even start a change. We all love MIL, I would like to think we are all working with the same things, caring for her as best we can. Alas, it doesn't feel like that is the case.

I am thankful for my sisters and I have several nieces that always go away with us. This year was nice, but bitter sweet. We left the funeral had lunch with my family, also brothers family, then hit the road. I thank God we had a safe trip.

As my baby son ((age41)) says to me, Mom, you are rambling, I have got to go. Lol He lives in Atlanta and I know he misses me as I do him. So, here I am rambling, its time to move on. I love you all, think and pray for you all and always look for words you all have written.

Joy, you are a pillar of strength also. Just take care of Joy. Don't regret too much, you were a great caregiver and I know your mom appreciated it. my love to all, Jo