An Update

White Crane

Last week I posted that I was about to lose it.  It was not a good week.  DH left the house two days in a row and "went for a walk."  Thankfully, he didn't wander too far and I was able to get him home safely but it shook me up.  When he gets upset at me he sometimes does this.  Then we had an appointment with the dermatologist for our annual skin cancer check.  DH has had several skin cancers removed.  His behavior in the office was so frustrating and upsetting!  I hate taking him to any Dr. appointments.  He complains the entire time, sometimes loudly.  The Dr. has a loud voice and when she asked him a question, he yelled back at her.  When she tried to examine his face using a light, he took the light away from her and shown it in her eyes.  There was nothing I could do except sit and watch.

The next day, I had a Dr. appointment to find out the results of a scope I had had last month.  It turns out I have hemorrhagic gastritis and my stomach has been bleeding at times.  Now I am on a very restricted diet and a very expensive liquid medication to coat my stomach.  DH understands none of this and if I get upset, it upsets him.  Bottom line, I'm in pain with my stomach and I know that stress has something to do with it.  Trying to follow the diet restrictions is difficult but I'm trying.  Some days I just want to run away from this awful disease and not come back but I don't...of course.  I love him and am doing my best to take care of him. 

Beachfan

Brenda,

Please, please, please gather your children and make a plan.  You are falling apart at the seams just trying to manage DH.  It is not a failure on your part to actively seek and accept outside help, even as extensive as placement.  It may take someone else to show you the way. (For me, it was my kids; they banded together and essentially said, “This has to happen.”) 

I thought I would care for DH until the end; that didn’t happen and I think both of us are in a better place thanks to someone else forcing my hand.  I think of you often and pray for a satisfactory outcome for both of you. 

White Crane

Dear Beachfan, Thank you. And I know you are right.  I try to keep the kids informed but I haven't gathered them and tried to make a plan.  The area agency on aging gives me 16 hours a month of respite care but I don't usually use all of them.  I don't have anywhere to go.  And DH gets so upset when I leave that sometimes it seems easier to just stay home.  I know I need help...more help than I am getting.  He is  still highly functioning but I can see that his disease is progressing.  Again, thank you and I will talk to the kids.

Brenda

Beachfan

Dear Brenda, I hope I didn’t come across as advocating for the immediate abandonment of your DH.  For the record, I spent well over two years researching and evaluating placement options, “just in case.”  (The kids were pretty much in the dark during all this, but I found out later that they were chatting amongst themselves, worried for me as much as for DH.) By the time he was placed, DH had  progressed significantly, to the point where he no longer knew me, nor did he know the kids, grandkids, where he was or why he was there. If he were more cognitively alert, placement would have been difficult, bordering on impossible.  (Several years ago, I attempted a day program and he wanted no parts of it.) Like you, I found it easier to stay home or always keep him with me. Just sharing your concerns with your children might give you some peace.  You might be surprised to hear their innermost thoughts.  Stay strong; it’s a rough road.

dayn2nite2

Please eliminate all doctors for him that are for anything less than dire circumstances.  Skin cancer check/treatment is not important in the context of dementia.  

For him to take the light from the doctor shows he is impulsive and could get dangerous.

Do not take him to your appointments anymore.

Your illness is very serious.  Your stress in taking care of him is off the charts.  Please have a family meeting and whether a placement decision is made or your caregiving is greatly reduced, one or the other needs to occur now.  If you don’t make a plan for that, then you may as well plan who will care for him when you die, because that will almost certainly happen if you don’t lessen your burden now.

MaryG123

First step might be to use that respite, as he’s probably not going to be happy whether you’re home or away.  Is there an in person support group you could attend when the aide is there?  A place you could take a walk?  My husband nearly died from a stomach ulcer from taking ibuprofen on an empty stomach for months.  They’re nothing to fool around with!

Iris L.

White Crane, a bleeding stomach is very serious.  You could need to be taken to the ER for emergency transfusion and/or surgery at any time with little warning.  Prepare for this.  Check yourself daily for dark, tarry stools, which is a visible sign of gastrointestinal blood loss.  Don't take aspirin or ibuprofen or other anti-inflammatory meds.  Are the children aware of your condition?

Iris

M1

I'm just adding my voice of concern and support Brenda. Your DH sounds like my partner in terms of his intense dependency on you (i was reminded of that in our visit today, it's understandably intense with me as with no one else). And as Beachfan says, please be honest with the kids. They don't want to lose you, too.

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Ed1937

Another vote for getting the kids involved. If something bad were to happen, you wouldn't want them saying "If only she just told us." They want to know, and you need them to know.

Davegrant

White Crane:

     I share your concern about respite time. I have four hours twice a week and my dw fusses every time but I still go. I too normally don't have anywhere to go but I go to the local library, or a fast food parking lot. I do run a lot of errands but to do them alone is a treat. I know she is upset when I am gone and even at home not giving her full attention. I am slow to leave and usually return early. I pay for the substitues and do not like paying out that money but I do it because I believe that it is important for me. My dw is not mean but she is persistent. To me this is part of the taking care of yourself. I have also followed the legal and finaancial recommendations that are given on this site. 

Dave

White Crane

Dear Forum Friends, Your concern and advice humble me.  Thank  you.  And I am listening.  I have talked to two of our children and will talk to the other two today and tomorrow.  That way they all know what is going on with me...and their dad.  The one son who lives 100 miles away is coming up on Saturday to install a doorbell with a camera and motion alert on it.  That will send an alert to my phone if/when DH leaves the house.  As for me, I will be taking more hours of respite this month even if all I do is go to the library.  At least it will be a quiet place to relax.  I have also decided to arrange a tour of a facility about a half hour away that has a good reputation.  DH is not ready for placement yet but I can see changes that may lead to that.  There are also a couple of very close friends that I can confide in and since both of them have or have had relatives with dementia, they understand.  This is not an easy road and I am finding out that I am not as strong as I once thought.  Also, I am following all the diet restrictions from the Dr. and taking the Rx as instructed.  For me, that is good since I'm not always the best patient.  Thank you again dear forum friends.

Beachfan

Stay the course, Brenda.  You are off to a good start with your planning and preparations so far.  Take the time to research facilities, “just in case.”  I did this for about two years all the while thinking and planning to keep DH home forever.  You are stronger than you think!  Enlist the aid of your children; they may surprise you with their insight and concerns.  Good luck.

White Crane

Thank you Beachfan.