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 How do we spend quality time w/our LO while maintaining life 
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Joined: Tue Apr 29, 2014 4:25 pm
Posts: 6
Post How do we spend quality time w/our LO while maintaining life
Hello. I just found this forum and am eager to gain info./support from others who are caregivers for someone with LBD. There is no support group in my vacinity, that I have been able to locate. My husband was diagnosed with Alzheimer's or "Early Cognitive Decline" in 2010 when he was 58. There were no recommendations for treatment in any way so we didn't put too much emphasis on it. Right after my wonderful father passed away due to a stroke, in the winter of 2012, my husband began spiraling downwards. The progression was very rapid and he was then diagnosed with LBD. Now, a year later, my husband is a very different person. He has just become incontinent and is very depressed because he is watching his body "fall apart". I do not leave him for more than a couple of hours at a time, which I'm sure all of you know about. I'm retired on disability due to serious physical issues from car accidents when I was a child. The most serious was a broken back. I bring this up to set the stage because my physical issues impact me greatly. I have just started with an aid to stay with my husband a few hours a week, which I feel very guilty about but know I need assistance. I moved us to a one level home in a 55+ neighborhood this past winter. I ignorantly assumed the bathrooms were handicap ready but have now discovered they are not. My husband does not want to go through reconstruction. And neither do I. We want to spend our time together enjoying, rather than being stressed out from the mess, noise and big imposition a major rehab. will entail. How do we try to make the little time we have together enjoyable and deal with the issues of life at the same time? When it's all said & done, it's the loving time spent together that means anything at all. Being stressed out is such an unhappy state of being.

Sat May 03, 2014 12:43 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How do we spend quality time w/our LO while maintaining
When I bought this house about five years ago I contracted for some extensive improvements which took about a month to finish. I had my husband spend the month in a 'dementia care' facility where I spent days with him [even took the dog] and came home at night to the house. He would have been very upset with the noise and the presence of people in the house [he saw people in the house even when they weren't but they tended to be quiet ;-)]. When the house was ready, I brought him home.
[Unfortunately, a couple of years later, I had to place him in a skilled nursing facility]. Don't feel guilty about doing what you have to do.

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.

Sat May 03, 2014 3:12 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: How do we spend quality time w/our LO while maintaining
"Thank you LTCVT! That was great advice. We can deal with the truth but the not knowing is so darned difficult. I'll continue to prepare ahead of time. What do you do about balancing the time together w/the daily maintenance & preparing and construction, etc? This is where I have great difficulty. I feel guilty about the consumption of time it takes to make preparations (and hassle dealing with contractors I must hunt for). It really bothers him. He has said that we're "not having any fun" and he really needs a stress free environment. He is so depressed knowing what's happening to him anyway, it's so difficult to then consume our days with the other stuff.
No, I don't have his family near, and no friends have stepped up to the plate even though I've said how great it would be if they could spend some time with him. I live in a metropolitan area where people tend to be very busy with their own lives.
I was surprised that you said that there will be times when we need 2-3 people. That's pretty disturbing. How do people afford it, if it goes on for years? Also, how do you find people to trust? My parents were robbed several times by aids who came in. My mother even had her $20K wedding band stolen."

In response to your posting elsewhere:

I was the primary family member taking care of my dad, but he was in a hospital, rehab center, and ALF when things got really bad, so my experience is very different from yours. He had lived at home alone just prior to his completely debilitating, overnight decline.
Pat (Mockturtle) and others are/were the primary CGs for their spouses so they can be of much more help than I with the balancing life issues. Pat had suggested that you move him to a facility while your house is under construction, and that may be the best given the situation - you'll have to decide that for yourself. The fact remains that the need for an accessible bathroom will become more and more important so figuring out how best to do that and get going on that will help you all in the long run.

Re: need for assistance in transferring, bathing, clothing, etc. there are a few options, none of them cheap. I'd suggest that you check out facilities now, even though you may be a long way from needing that and even though NONE of us wants to place our LOs in a facility. The time comes for most of us when we just cannot handle (physically or financially) the burden of a LO who requires 2 - 3 people to turn them, change them, clothe them, bathe them, or help them into a wheelchair. I would have much preferred to have my dad stay at home, but even with 1 CG 24/7, which is what he required after his overnight decline, it was way more expensive than having him move to an ALF. Needing 2 - 3 CGs multiple times a day was definitely not affordable for my dad either, so the $4,500 a month at a nice ALF was what we had to go with. Not cheap, but cheaper than 24/7 care.

If you go with an agency who places CGs in your home, the agency should (theoretically) have background checks, reference checks, etc. done. Interview them and ask them how they hire their workers, and how they are insured for theft, etc. If you choose to hire someone on their own, not through an agency, I'd do a criminal background check and get LOTS of references and thoroughly interview the reference folks. You already know what can happen so being vigilant about who you trust is really smart.

You may need to ask family members to take turns coming to help you, even if it's every few months. Any help you can get will be better than no help usually.

If my husband was experiencing the kinds of things yours and so many LOs are, I'd be very frank with my good friends about what his condition is and what's coming down the road. I know my friends would say "what can I do to help?" and I'd schedule them to come in and stay with him as often as they would be willing to do this. I wouldn't ask random acquaintances, but my best friends would be willing to help out. And we have done this for some of them. That's what friends do.

At the point our LOs can receive hospice services, that is something they do too. Hospice has volunteers who will just come in and visit. There may be other agencies or organizations who have volunteers who do this too. I have a friend who, for many years, would visit an elderly blind man in our community and read to him every week, for example.

You can rely on people on this forum to be moral support, too, which you probably need or will need. It is a big burden to carry all of this alone! 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.

Sun May 04, 2014 10:15 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: How do we spend quality time w/our LO while maintaining
Oh, and I'd put all valuables in a safe place if I had strangers coming in to take care of someone in my house. A $20,000 piece of jewelry would be in the safe deposit box in the bank, not at my home under these circumstances. You do need to be careful even though most people are trustworthy. Don't push your luck!!! 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.

Sun May 04, 2014 10:17 am

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
Post Re: How do we spend quality time w/our LO while maintaining
Welcome to the forum, edchant! You've got lots of good feedback here and I would just add that you hit the nail on the head. Being stressed out is such a terrible way of life that you want to do everything you can to make yours and your husband's life as pleasant as possible. That definitely means hiring help, so do it and don't feel guilty about it. You can't maintain your health and your cool if you're exhausted so smart people get help so they can get rest! It's a long hard road and you'll need your strength! And I would also say that it pays to be smart when you have caregivers in your house - but out of all of the caregivers I have hired over the years, I've never had any problems.

Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Sat May 10, 2014 3:48 pm
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