Is anyone taking care of a spouse?

[pennypincher81]

I have been taking care of my 90-year old husband for the last 7 years.  He has Lewy Body Dementia and Parkinsons.  I was going through chemo and radiation for breast cancer when my husband started having problems.  I am 87 years of age and have other health issues.  I am not able to do the actual caretaking, but do have help around the clock.  I know it is very difficult to do all that is needed day after day for your husband.  Even though I have help, I am usually here overseeing things and tending to his meals.  It is a very lonely world now for me, and I know it must be for you too.  My faith in God keeps me going - without Him I would be locked up in an institution!  

[mv6544509]

thank you-If I titled snail mail, att'n, confidential-would only the Dr open and read? My spouse is so suspicious anyway.

[Jlincoln008]

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@lb50258545 wrote:
Hi Jane, I do have an aide that comes in everyday to help and I do get out. Unfortunately not all situations occur when the aide is in our home. Plus I enjoy being at home without the intrusion of another person sitting till it's time to "do something" for my husband. The good news is as a nurse who has worked in long term care I do know how to use a lift and safely transfer my husband even when he is on the floor. It's just frustrating at times, there are no easy answers and I like this forum to be able to share those frustrations. thank you for listening!

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You are very welcome. I learn something everytime i read caregiver's posts. There are common challenges and unique ones. You really know what you're doing. And still, there are so many frustrations!  Carry on, and keep posting! Thanks for sharing, truly.

[Jlincoln008]

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@mv6544509 wrote:

thanks, I don't have close access to a fax, so I wonder about e-mail.

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In a pinch, i've used my church office's fax machine, and i've been known to go to FedEx and send a fax. If the doctor's office is not too far away, you can always drop something off a day or 2 before the appointment. it is such a relief when doctor's use email or an insurer (like Kaiser) has a portal. There's also snail mail. Just mail something a week before.

one tactic of many possible ones.

Jane

[lb50258545]

Hi Jane, I do have an aide that comes in everyday to help and I do get out. Unfortunately not all situations occur when the aide is in our home. Plus I enjoy being at home without the intrusion of another person sitting till it's time to "do something" for my husband. The good news is as a nurse who has worked in long term care I do know how to use a lift and safely transfer my husband even when he is on the floor. It's just frustrating at times, there are no easy answers and I like this forum to be able to share those frustrations. thank you for listening!

[mv6544509]

thanks, I don't have close access to a fax, so I wonder about e-mail.

[Jlincoln008]

REGARDING FALLS

I think this is true all over the USA. When you call 911, you can request MANPOWER, which means you need a couple of burly men to pick up the person who has fallen and gently plop them either into bed or into a chair. Don't risk hurting yourself. it's your tax payer dollars at work. 

Call 911.

Jane

[Jlincoln008]

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@lb50258545 wrote:

Well I've had a day and a half.  My husband who has Lewy Body Dementia has become increasing mobile and this afternoon stood up and started walking on his own.  He hasn't done that for at least 6 months.  The problem with him standing and walking independently is he has VERY limited endurance and of course when I helped him he couldn't make it to his chair and sat on the floor.  The good news is I can use the lift to get him off the floor.  Believe it or not this happened a second time when he wanted to use the commode chair and again couldn't make it back to his chair and again sat on the floor.  Thank goodness he didn't get hurt and neither did I.  But what I realized this afternoon is I can't make him better and I'm feeling so overwhelmed with his care.  I don't want to place him in a nursing home and I don't want more help in the house, someone just sitting here till it's time to do something.  I feel so trapped and I don't know how to change this feeling.  I also feel like such a failure.  I realize intellectually I can't make him better, emotionally well I'm a wreck.  We have no family in the area, rarely have anyone stop in to visit unless they are coming in to sit with my husband while go out.  I don't know how much longer I can do this and that makes me sad as well.  Yes, I do get out everyday for at least 2 hours and some days more, it's just emotionally exhausting for me.   Any suggestions, ideas?  Thank you so much for reading and responding! 

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Hire an aide!  The minimum is 4 hours. You can get your hair cut and go to the grocery store or have lunch with a friend. Do you sit around and do nothing? They won't either. Ask them to clean his bed, or vacuum around his chair which surely has crumbs all around the floor/rug. Ask them to heat up a meal and give it to him. The aides i work with are from the Phillipines and West Africa, and they vary as all humans do, but they are trained to clean bodies and keep minds company even if the minds don't work very well. They make a little bit above minimum wage for a job that is not easy. Don't begrudge them their down time. Give yourself a break.

Jane

[Jlincoln008]

@mg50694312 wrote:

Sometimes God is the only one you can talk to.  My wife contracted Hep C in 1985 through a blood transfusion.  She has lasted a lot longer than expected but she is now in liver failure.  She participated in a clinical back in Jan, 2015 and was cured.  Unfortunately it was too late, the damage is already done.   They cannot consider a liver transplant because she has developed Pulmonary Hypertension and two growing spots in her lung.  It is too dangerous to do a biopsy, but she has now developed congestion and heavy flem.  All the signs are there.  Thank God for my daughter for helping out, but she is no one to talk to, as are her brother and sisters.  No one wants to discuss it, much less visit to give encouragement.  Sadly, the burden is on the spouse.  I draw comfort from our 43 years of marriage and how we were when we were young.  Thankfully, I am healthy enough to care for her needs.  I pray for patience and compassion.  I tell her how much I love her, make her as comfortable as possible and hope things work out, however every week hope fades.  Yes, God is our best friend right now, he's with you now, just talk to him.  Good luck

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Dear mg,

I believe that God created Hospice Care for people just like your wife, you and your family. And the fact that she would benefit from Hospice does not mean that she has 'only' 6 months to live. Here's a really good article about it: http://www.aarp.org/relationships/caregiving-resource-center/info-08-2010/elc_facts_about_hospice.ht...

Aside from whether or not you and your wife go forward with hospice care, I do wish that you both could talk with someone about what you are facing. Her slow decline is heartbreaking and hard work. Your burden is great. Share it. Talking honestly and heartfully about what is going on reducing your sense of isolation and desperation, and also HERS. You both and your children have a lot to say to each other. Don't put this off. Tell the truth, together. Even if the truth is that you know this is hard, you know that the doctors don't have a cure, and that every moment together is worth the trouble, the smell, the exhaustion. (But not in isolation).

Do you have a minister who could help?

To find out more about hospice, google 'hospice' and your county or city and call up the non profit ones. they can send someone out to you for free to explain how it works. but my guess is you have a lot more talking to do before you take this step.

What is your next step, with God's help?

Jane

(a church going hospice social worker)

[Jlincoln008]

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@mv6544509 wrote:

Reading some of your messages, I am struck by the similarities we all are coping with. My spouse, a stroke victim with damage in the logic, and cognitive areas of his brain, refuses to believe that he is not functioning as well as he used to. I see instances where he is declining, but have trouble expressing this to his medical team without my husband being present. How do the rest of you communicate to a PCP, endocrinologist, therapist without your spouse being right there? Hugs to all. 

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One trick i use is to fax the doctor's office before i take a client to see the doctor (i have been a geriatric care manager and am now a hospice social worker.)  I'd often handwrite it in large magic marker to get the attention of whomever is removing faxes from the machine. Then put my concerns below that. Something like this:

Fax to Dr. So and So

Regarding upcoming appointment (Day and Time) with Patient So and Such,

I am his wife and primary caregiver. I have the following concerns that i cannot bring up with him in the room:

1. He's in denial about his cognitive impairment. I see the following behaviors that he won't admit to. Is there anything that can be done to treat them? ___________, and ___...

2. This drug seems to have a terrible side effect....

3. Blah blah.

Keep it short. Send it 1 business day before the appointment so the fax gets in the chart, which may be the first time the doctor sees it.

Doctors know all about the trickiness of talking to the spouse/caregivers out of earshot of the patient.

See how that works. Good luck,

Jane