Changes coming

David J

Later this month I am having a minor medical procedure and will not be able to manage my wife’s care. Next week, she will go to an MCF for a 30 day stay, and the week after that I go to the surgical center. I will have some time to recuperate and attend to some business. Any feelings of guilt at sending her to MCF have been obliterated by recent behaviors and difficulties. 

My wife’s dementia has worsened, complicated by a rampant UTI. We are in the middle of a course of antibiotics, with some improvement in continence, and maybe her awareness of her surroundings and ability to understand. I find a good portion of my day is taken up by calming her down and keeping her exit seeking under control. I had my pre-op physical today and DW was with me (no alternative).  I spent the whole time preventing her from leaving and hugging her to calm her down. My PCP and his staff were great, but my first try at a blood pressure reading was 138/90.  After my PCP talked me down a little, it was 119/79.  I kept telling DW that it would only be few minutes more, and she kept saying OK let’s go. Over and over.

I said I don’t have guilt about the MCF, and that’s true. If things go well for her there, I will make it permanent.  I refuse to feel guilty because my health is in as much jeopardy as her’s, maybe more.  I have reached the point of breaking, and I can’t provide the he care she needs.

My wife won’t eat.  I’m trying to give her food she likes, hoping she’ll eat a lot. What usually happens is she picks at it then gets up and walks away from the table.  I try to get her to come back and eat, but after a while its clear she won’t. So I eat it. I am struggling to get her to maintain 90 pounds but I have gained 15 pounds and trying to not break 200!

All of this can’t go on indefinitely. (Awkward sentence structure!) I need to get control of my physical and mental health or we will both die young.

Joe C.

David, Wishing you the best on your medical procedure and the respite placement. Yes, no guilt, you need to take care of yourself or you will not be there for your wife.

Quilting brings calm

David - the beginning of my Moms’ dementia diagnosis started with an undiagnosed ( not for lack of appealing to  doctors) UTI that turned into urosepsis. We were sure that she was going straight to a nursing home because her function was so poor. We couldn’t leave her alone for a minute.  So I understand what behaviors you are talking about.  

Please do not feel guilty for taking care of yourself.  Please do not feel guilty for recognizing that she might be better permanently in a facility or that at least you might live longer that way. We are only human, with human limitations mentally , emotionally and physically 

I hope your surgery and aftercare goes smoothly. 

M1

David, it sounds like you have done absolutely everything you could possibly do. You can't stop this disease, you can't make her eat. I'm glad you have these plans in place. I haven't faced placement yet, but I can only imagine how hard this is- but to an outside observer, it seems like you've done more than most could. Peace to you.

abc123

Dear David, I believe you have made a wise decision for each of you. Good luck with your medical procedure.

Ed1937

David, I hope your procedure goes well, and you recover in short time. You are doing the right thing. No guilt!

eaglemom

As others have said, have no guilt. What you are doing is caring for yourself, which is a wonderful thing. I'm glad that you will have a month to finally be able to take a deep breath and recuperate.

After your procedure that is recovery time. Do not exhaust yourself trying to catchup on a million things. The focus is you.

Best of luck.

eagle

French

David, I hope it will go well for you and her.

In 9 days we will fly to Tunisia and after 3 days with him, I will let him there. 

Will see

LadyTexan

Greetings David - 

I am glad you are doing what you need to do to take care of you. I hope your procedure goes well. I hope your wife transitions well.

Take time to heal and rest. Your body has been through strain and stress. Do not rush things.

God bless you.

-LT

Beachfan

David (and French),

Best of luck with your upcoming respites.  You have obviously thought everything through, made informed decisions, and now is the time for your well being.  Look ahead and make the most of the time you have to rest and rejuvenate.  Above all, no guilt!  We will all be thinking of you.  

David J

Thank you all for your support and advice. One piece of advice has been to discard the guilt. This is actually getting easier now that decisions have ben made. It has become obvious in hat this is the best for both of us.

David J

French, Good luck with your respite also!  My DW will be less than 5 miles from me, while your DH will be virtually unavailable to you. I don’t know which is better.

Jeff86

David,

I have read your posts over the last 1 1/2 years and admired greatly the care and support you have provided to your DW.  It has been a long and arduous road and your dedication has been remarkable.

And you’ve said it exactly right.  It can’t go on forever.  The relentless progress of the disease cannot be stopped for your DW, and her care needs have become so extraordinary that she needs more help—this is no reflection on you, only on your wife’s AD journey.

You are making the right decision.  For both of you.  I hope your medical procedure is a success and you regain your health, even as you transition to a new facet of caregiving.

Will be thinking of you.

French

The path is paved with pitfalls: today I received a message telling me that our flight to Tunis is canceled. The same for my return flight.

I spent my lunch time searching a new flight. It won’t be a direct one but it is now Air France and from Paris. This new one shouldn’t be canceled. The price is also double. But I have now admitted that Alzheimer is an expensive disease.

In one week, on Thursday, we will take off at 6:00 AM, have a connexion in the Charles de Gaulle airport (well know for it’s crazy arrangement).  It will be 5:30 hours instead of 2:30 plus the stress of the early wake up (at 4:00 am) and of the connexion. Coming back will be the same. No more direct flight and I will spend my Sunday in airports or planes. But after… 24 days respite . As I am not retired, I will be working, but I think it will be like holidays. Just me and my teens