I can't believe this life

sherryandwilliam · October 12

My husband is going into late stage alzheimer this has been going on 10 years now. I feel like a robot most of the time devoid of emotion because the days and nights both keep me from having a normal thought.

It has been nearly two weeks since I been out of the house, The ambulance brought him home from a 5 day stay in the hospital from a fall, thankfully nothing broken. But the hospital stay I was up with him 24 hours straight from Er to him getting a room. He can still walk but does it poorly . Of course he does not listen to do not get up without my help. I know he is not able to remember that instruction.

He was brought in a hospital bed and a lift when he was released but the lift was never needed he soon was able to get out of bed. Amazingly second night home he got out of bed and walked to his old bedroom. I was not aware he had that capability before that happened.

I now push the couch up against his bed so he cant get out and I sleep on the couch so I can hear and react to him. He doe not sleep and wakes up constantly fussing and saying Help Me. It wakes me up and I say it is nightime and we are both supposed to be sleeping and he quits but the process starts over and over through the night. He was not incontinent until after the hospital stay now he soaks thought a overnight tab diaper with a pad and a pullup over it. That is something I am working on now trying to figure out how to keep him being soaked and the top sheets and blanket being wet. I have a good pad underneath to keep the mattress beneath him dry.

He eats well and is maintaining weight he needs supervison and help I do let him try the spoon but usually take over when it gets to hard for him to keep at it. Place his pills in his mouth and say swallow with a drink ready I hold and get him to drink to get it down.

I feel sad that I may have years and years of this and also sad to lose him. I am doing my best and am just unloading her so forgive me going on and on. Maybe some understand and are in the same staqe with their spouse

Am on a list to get 6 hours total per week of caretaking help which I will have to pay for. Even that sounds good at this point.

RetiredTeacher · October 13

I an so sorry you are going through this. We understand snd it hijacks our LOs life and our own. Noone wanted to be I'm thos place but we are here to support you. I cannot give advice aspiration situation is not that far along yet. I do hope the dr can adjust meds to help with sleep and hope others herecan offer suggestions for the wet/soaking bedding. Sending hugs and prayers, this is so hard!

tonyac2 · October 13

I’m sorry too that you’re going through this. Totally get the constant demand this illness requires. Regarding bed wetting, sheet wetting, clothing wetting. I finally pulled the trigger and purchased a Purewick external catheter. It’s spendy, but it has saved my sanity plus my DH sleeps better now that he’s not soaked in urine. He can’t stand or walk, so I’d have to use the lift at night to get him up and change his brief/diaper. Wish I would have done it earlier.

H1235 · October 13

This is too much for you. Call for some help! Maybe it’s time to consider mc. There can be a waiting list so it might be a good idea to look around and make a plan B if you haven’t already. Have you considered calling hospice? We use tena overnight pull-up and they are quite thick. I got them on Amazon. His doctor might be able to prescribe something for sleep. I hope you can find something to make things a bit easier on yourself.

jgreen · October 13

https://alzconnected.org/discussion/comment/255979#Comment_255979

Hi H1235 and Sherry,

I am not yet in the same place as you, Sherry. I agree with H1235 about calling Hospice for an assessment. I have read in other discussions that their assessment is ‘no charge’. They might be able to give you some tips and also advice on where you can get durable medical supplies, etc. Depending on their findings, they may be able to visit during the week and be of help to you.

You know the drill by now, you need to take care of yourself first so you can support DH. Easier said than done, I know, but keep that thought and mantra at the forefront. Learn to say “yes” to offers of help from neighbors and friends, and have a list of things they can help you with - laundry, groceries, simple meals or take out so you don’t have to cook, or someone to sit with DH so you can take a nap. They will feel good to help you out and you will get a little rest.

God bless you; and virtual hugs coming your way.

SDianeL · October 14

ditto on calling hospice for an evaluation. If they accept him they will reevaluate every 6 months. They provide so much help. Hospital bed, supplies, nursing help, counselors and clergy.

sherryandwilliam · October 15

https://alzconnected.org/discussion/comment/255972#Comment_255972

Great idea. But at his stage I think he might pull it out

sherryandwilliam · October 15

I agree on the hospice but when I called them recently since he has not lost weight and still has an appetite they said he probably had excess of 6 months. We have a appt on Nov 10 with his doctor I will try to get the primary doctor to get them involved.

sherryandwilliam · October 15

I will see if the doctor will prescribe something, He does calm down when I speak to him at night, Now that I am close by it has a calming effect on him. You just feel so bad for them

tonyac2 · October 15

https://alzconnected.org/discussion/comment/256098#Comment_256098

That’s a possibility. I worried about that as well, that he wouldn’t tolerate it. But…he’s never messed with it. I tuck the tubing under his thigh before connecting it to the catheter and it stays in place all night. Just a thought.

sherryandwilliam · October 15

Thank you. I try to keep myself sane through all this, But we all know it is hard to do, Every year was a change in the beginning of the disease Now it is every day some new event happens that we have to find a solution for

White Crane · October 15

Try putting two or three layers of bottom sheets on his bed with pads in between. That way you can remove a layer and have a dry bed without having to remake the entire thing. Some caregivers have had good luck with parentgivinparentgiving.com for disposable diapers. Have you called the Area Agency on Aging to see what help they can give you? They were very helpful for us. I'm so sorry you and your DH are having to go through this. Sending hugs.

Chammer · October 16

I bumped up a post on Useful tips in the Caregiver forum that has @Ed1937 's bed protection method well documented. It has lots of other helpful tips. (I didn't see a "shaving cream as poop clean up on aisle poop everywhere") but it might be there.

Chance Rider · October 17

@Chammer thanks for pointing out and bumping up that thread! I copied several tips so I can readily get back to them when the time comes as we’re not “there” yet but will be at sometime.

I can't believe this life

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