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 Sole Caregiver 
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Sole Caregiver
The Caregiver thread brings up an important issue about the injury or illness of the sole caregiver. This and many other issues are unique to the sole caregiver, so I think this might be a useful topic.

I am a sole caregiver for my husband, with limited funds for extra help. The only family members are a brother and sister who won't step up and help even though they have been asked repeatedly.

LBD patients with sole caregivers presumably end up in a facility earlier than others.

And LBD spouses, especially men, presumably end up in a facility sooner due to both physical and financial reasons.

Gail


Wed Dec 22, 2010 3:07 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sole Caregiver
Gail, are you getting any paid help at all? Last February I started having a caregiver come in for four hours two mornings a week so I could get errands done, meet a friend for coffee, etc. It meant the difference between sanity and insanity at that point. He strongly resisted it at first and I canceled our first appointment due to his protests but then I decided I would simply do it--for my own survival as a healthy caregiver.

If there is still an adult day care in Kalispell it might be your most economical choice. I have a friend who is a home health RN in Whitefish/Kalispell and I could ask her if there are other affordable options.

Just when you find solutions the whole situation changes. Right now, my husband has reached a point where he is a two-person transfer [cannot assist] and I have him in a SNF for two weeks while I get some hydraulic equipment delivered. The holidays have slowed our progress.

We are also on a limited income [I had to quit my job five years ago to take care of him--I have no regrets, but also no pension] and we're using our savings for his care. Believe me, Gail, it's better to spend the money to keep yourself healthy than to lose your health and have money in the bank. God bless you!!!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Dec 22, 2010 7:26 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sole Caregiver
Thank you for a place to learn from each other. The past two weeks, I have felt more alone than ever because of Dale's constant delusions. I'm planning to find help to watch Dale for brief periods after Christmas. He is agreeable. (I can't believe we took a trip to Italy last winter. So much has changed!)

I'm thankful that I can phone my sister. She is marvelous in talking with Dale when he becomes unreasonable. She cared for our mother before placing her in a home three years ago because of dementia. She remembers and she can mediate when tensions rise. (Dale usually apologizes hours later, by the way.)

And yes, I am worried about my own ability to keep doing the physical work associated with Dale's care. I hurt everywhere... especially my neck. Dale is becoming more difficult - especially when it comes to toilet issues. Today, he wore a disposable brief all day. He thinks he can't control himself though he rarely has an accident. He is obsessed about becoming constipated. (That's not currently a problem.) Bending down to remove the briefs and pull them up again 20 times a day in front of the toilet is torture.

I am trying to remind him to do as much for himself as he can - but he would rather rely on me. He calls and calls and calls.... And then, he walks to the kitchen without his walker. Go figure....

We have investment income but we are not wealthy. We have the same housekeeper we've had for more than eleven years. Her husband works in the yard - which is just over an acre. They are loyal and caring but have no experience with dementia. In fact, they have been shocked by Dale's decline.

Thanks for this special thread. I hope to learn from you.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 22, 2010 8:14 pm
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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
Post Re: Sole Caregiver
I was also in this lone caregiver position.

But my daughter got divorced. I purchased a bigger ranch style house and moved her and my grand daughter (age eight) in with us. ((That was weird - when I tried to put the number eight in there - I got a smile face!)We are helping each other. She does work, but if I really need to get out alone, I can do that when she gets home from work. So far, I haven't needed to take advantage of our unique arrangement.

Don't know how this will work as his illness progresses.

Karen


Wed Dec 22, 2010 9:00 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sole Caregiver
Gail -
Does your husband qualify for Medicaid? Have you checked lately with your area agency on aging to see what they might recommend?
Robin


Wed Dec 22, 2010 9:04 pm
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: Sole Caregiver
Hi Gail, my dad had PD and my mom wore herself to a frazzle being his sole caretaker until we realized that she was having such a difficult time. We stepped in to help her full-time a year before he passed away because his physical and mental decline was more than she could handle. My sister and I shared being with them during the week (we lived 2 hours away and left our families) and my brother who lived beside her spent weekend nights. It was very difficult on us, then one day I realized, at least we get to leave for several days in a row, she never gets away from the stress and physical strain.

Thankfully their family doctor realized that we all needed help and suggested that we contact Hospice. I thought that my dad had to be close to death for Hospice to become involved, but that was not the case with this Hospice. They were wonderful and believed that their services were necessary before it came to the end. The doctor realized that a care plan needed to be in place before the situation came to a crisis point. So the nurses came at least once a week to check his vitals and monitor his meds. They also paid for all meds related to Parkinson's. A care nursing assistant came 3 times a week to help as well. We could have asked for more time if we needed it. As it was, he finally had the big fall, had a brain bleed and the trauma center said that there was nothing to be done but wait and see. So we were able to bring him right home with a hospital bed, oxygen, a hoyer lift and all medical supplies, diapers, chucks, the works. They arranged everything. It was a godsend to have their help. He only lived for 2 more weeks, but I shudder to think what his last 2 weeks would have been like if we were trying to arrange for Hospice care after the fall. He probably could not have spent his last few days at home, and we would have watched him die in a rehab center or nursing home.

Now the same Hospice center is helping us with our mom. As soon as I called them, even before she was diagnosed with LBD and still in rehab, they were ready. She qualified under failure to thrive as she had lost 25 pounds in 2 months.

The main point is that we learned is that all Hospice services are not the same. Some would not have accepted my mom or dad until they were on death's door. Fortunately, we found one (private, but still free to us) that had a different philosophy, as did their doctor.

I pray that there is a Hospice near you with a similar understanding and that you can get some help now and not later. We all know what stress caretakers undergo, and we know the toll this disease takes on us as well.

Stay strong and we are with you!

Debbie

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Thu Dec 23, 2010 5:01 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Sole Caregiver
Interesting posts already. I didn't know any Hospice services stepped in early, and that VA (at least sometimes) has a person to work with you.

Our limited income is sufficient for our current modest lifestyle (ah, those days when we actually did travel and do frivolous things, and return on investment was better than 1-1 1/2%). I want to marshal our resources because future facillity costs will get us pretty quickly, and am trying to err on the side of thrift. A single parent's income can be drawn down because he/she has little outside expense. For a spouse, that spouse still has to live on the joint income. As if all of you didn't already know that!

Starting next week, a home health lady will come stay for several hours while I go do errands. She works for Home Options in Kalispell, perhaps the same employer as your friend in Whitefish, Pat.

Fortunately, we should be able to apply for VA benefits--the trick is to do that without spending down so much that yours truly will starve (except about 20 pounds of starvation would help).


Thu Dec 23, 2010 6:48 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Sole Caregiver
P.S. Home health lady will come once a week for several hours.

There is a senior day care in Kalispell, but we live a bit far to make it worth driving him in and picking him up. I need a creative idea to get him elsewhere for several hours a week to do some stuff in the house uninterrupted. Have any of you come up with anything creative?

Lynn, I enjoyed your mention of the Dairy Queen. Several days a week, we have to go thru the drive-in of a nearby DQ for milk shakes. Sigh, I'm not strong enough to forgo one for myself.


Thu Dec 23, 2010 6:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: Sole Caregiver
I could eat a big hot fudge Sunday from DQ right now! LOL My dad's favorite milkshakes were from a small place in the town where he had lived, 1 hour from the ALF. He still wanted his milkshakes from there after he moved, and they'd be all melted by the time we got them to him. So, I started getting them at DQ (5 min. from the ALF) and telling him they were from Downey's and he eventually couldn't tell the difference. Phew! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Dec 23, 2010 11:20 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sole Caregiver
This 'sole caregiver' has arranged for paid help in care giving beginning on Sunday... It's my Christmas gift to myself... and a new experience. Cross your fingers for me. I'm admitting that I can't do it all - and that's a big step for me.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Dec 23, 2010 11:36 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Sole Caregiver
Leone,
This is a big step admitting you can't do it all, I hope it works out for you!
This is an illness that everyone needs help with !

Good Luck !

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Irene Selak


Thu Dec 23, 2010 11:42 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Sole Caregiver
Leone, that is wonderful news. It will make a big difference in your Lewy life. Good for you!


Fri Dec 24, 2010 12:41 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Sole Caregiver
leone.. you will be in my thoughts.. i know this took a lot of sole searching...merry christmas.. enjoy your special gift!!

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Fri Dec 24, 2010 12:48 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Sole Caregiver
Leone, You have given yurself a wonderful gift. Let me know how you structure her time. I am thinking about getting someone in as well. But I am a person who puts things off...........

Nan


Fri Dec 24, 2010 2:37 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Sole Caregiver
Leone, You need that time, even if it's only a few hours a week. We have a woman come in 4hrs on Wed., when things start to get to me I think about what I'll do with MY 4 hrs. What a wonderful Christmas gift, one that keeps on giving, to you, your health and mental state.

Nan, Think about it, sometimes getting the house in order and getting Frank up, fed, showered and dresses is sometimes a hassel, but when I walk out the door, that's all behind me. Make it your New Years resolution to get some help.

Merry Christmas to All!!
Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Dec 24, 2010 6:32 am
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