Worn out

Elshack

I am 82 and DH will soon be 92. 6 yrs since he was diagnosed with MCI but went into moderate Alzheimer's since his brain surgery 4 yrs ago. Today I was wondering how long I can do this. We are in independent living and I just talked to the neurologist on the phone for a 6 mo appt and he said DH was doing remarkably well. Yes, he makes his own coffee and is not hostile etc. BUT now he is getting up 3 x in the early a.m. ( like 3:30 a.m ) to make coffee and I have to put him back in bed.

I know many others have a much worse situation but in the past week I have had to clean the bathroom thorougly from BM problems ..he has Crohn's disease...and his Depends get filled up, and then I have to put him in the shower and get clean clothes , had to take him to the Dr because of a sore on his bottom, cut his toenails and nicked his skin with my clippers and had to take him to Urgent Care so now have to put gauze etc. and tape on his toe every night. He says next to nothing all day and repeats questions if and when he does talk. He can still stay in the apartment when I go grocery shopping or have other appts so I am lucky in that sense.

I have chronic fatigue syndrome and fibromyalgia and in the past year have had to have eye injections for wet macular degeneration in one eye. I can still drive and take care of everything...finances, car etc. 

I was aggravated with him when he got out of bed 3x already...I am typing this at 2 a.m. I really admire caretakers who seldon if ever lose their cool. I know he doesn't know what he is doing as he has no short term memory. I guess I just need props to tell me I am doing the best I can. No family nearby and no reason to pay help $ 25.00 an hr to shower him etc. I am doing all that but I am ...worn out. I do live in a place where I see others so can have human interaction for a couple of minutes a day but still it is a very lonesome existence.

M1

Elshack, I think you've just given all the reasons why you Should pay someone $25 an hour to shower him etc. That is, if it is affordable, I think you deserve to hire all the help you can. I'm so sorry.

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toolbeltexpert

Elshack I don't know how you do it. I am just 65 and dw isn't anywhere near that bad. I agree with the others if you can afford it, give yourself a break, and take care of you.

Jeff86

You’ve done a remarkable and heroic job as a caregiver, Elshack.   It’s time and then some that you don’t carry 100% of the burden.   Please get some help and look after yourself!

May flowers

Elshack, I saw your reply to me on the other board. Your situation is incredibly hard (much harder than mine). There is no way I could function if I were waking up at night like you have to. I hope you will consider overnight help so you can get a good night’s rest.

Quilting brings calm

Have you considered that a move for both of you to assisted living might be in order?     Independent living places vary so I don’t know what services ( laundry, Housekeeping, meals) that you are getting now.  Assisted living might get you some extra services that would allow you to concentrate your limited  energy on your spouse. It might also free up more of your time so that you might be able to get some time away from him every day.

Rick4407

Elshack, I've lived a similar difficult sort of existence a couple of years.  I started initially, ignoring whatever I was doing, and taking a nap whenever my DW did.  Sometimes 15 minutes or sometimes an hour.   I did that for about a year and was able to keep up with her.  

A couple of months ago I found a lady, through a friend, that was somewhat in distress.  I offered her room and board and a small salary to just do house work and very occasionally watch after my DW.  That has worked out well for all of us.  She recently quit her daytime job and now works 2-3 hours a day as the caregiver for my DW.   It is now more expensive but it's saving my DW from placement and me the expense of placement.   So far a happy outcome for all of us.   Her salary is tax deductible as a healthcare expense which helps at least a little.

I was lucky that our helper is caring...  Good luck, Rick

Joydean

Elshack you’ve been given some really great advice. I only want to say please take care of yourself! You deserve it. Prayers for you and your husband!

storycrafter

You've done an amazing job. Now is not the time to be stoic in the eyes of society. Pride is not a virtue. You've gone above and beyond for too long. It's good to request help and let others support you both. It gives them an opportunity to serve. Don't wait any longer. Reach out for help.

I don't know what your living situation actually is so am unable to advise specifically. All I can do is share some of my personal experience and perhaps there might be something you'll glean that is helpful.

Is there a social worker or a residents' coordinator where you live that you could speak with? They can be wonderful resources and advocates for you, if you let them know your needs. Now is not the time to minimize what you're dealing with. People cannot help unless you reach out and ask.

My parents lived in independent living apartments. There was a main desk and staff offices. The social worker on staff was experienced and was able to direct me to the resources needed when my father suddenly needed assistance. She gave me personal recommendations on who to contact. She helped advocate for my dad and had some practical, helpful suggestions. She was an empathetic and kind listener.

There are multiple avenues of assistance out there. If one isn't appropriate another may be. Another person to ask for help immediately is his/your doctor. If they aren't helpful, ask a different one until you find the support needed. A good doctor can quickly get things rolling for some real help. Be honest and let him/her know what you told us. You cannot do this alone over time. What you're doing is unsustainable for anyone. 

I have Crohn's disease that's in remission. And also deal with chronic IBS (irritable bowel). Everyone has different circumstances and again, I can only share generally without knowing more.

Ask his doctor for more help with the Crohn's symptoms. You probably already know there are prescription meds that can help almost immediately with bowel urgency, like Bentyl (Dicyclomine), that can help a person have more time to get to the bathroom. With a less reactive intestine, a few seconds can make all the difference.

Bentyl does not constipate like some over-the-counter meds. For me, the only side effect is ... I notice it affects my working memory. If your husband's memory is not good, it may not matter. I make the trade-off so I can go about my life without as many bathroom accidents. The prescription comes in different strengths and can be increased.

I hope something I've written above might be of some help to you. You're doing an amzing job, but I don't know anyone, even someone in perfect health, who could sustain such an effort over time. It's okay to let go and seek out real help, right now.

I wish you luck and hope you soon find the help you need. Also don't hesitate to call the Alzheimer help line and ask for a care specialist to speak with. They are available 24/7. 800.272.3900