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My husband’s AD is definitely progressing but we are dealing with most of the changes quite well . He loves his recliner and has learned, with prompting, to push himself up from it with his hands to his walker . He does this from other chairs as well . We got a hospital bed as his Dr and PT feel he should not sleep in a recliner at night as a small pressure sore , which thank God with much work and attention is healing between his buttocks. (never thought at this stage in life I’d become so much more intimate with my husband’s behind )


The problem is that no matter how often he is shown how to get up from the bed he can not do it . They prefer him to sleep on one side then switch to another to get even distribution and not favor one area . He suffers from knee pain , back pain and neck pain and even though he can get off the bed when the PT is here during the day, at night , trying to coach him just as she does , he just cannot comprehend what I am telling him and it’s a nightmare for both of us . My heart breaks for him as he is doing his best and trying , as I am. When I finally get him up, after going to the bathroom we head back to the recliner where he gets a good nights sleep. We have purchased a roho cushion which he sits on and also place a pillow under one buttock then switch to another so pressure is not in any one area which has really worked quite well . I get him up and moving every hour or so during the day as instructed and that too has helped.


I admit to being horrified when I saw the mild pressure sore as I was convinced, until being reassured by home healthcare, that somehow I really messed up but now I’m wondering what I’m doing wrong that I just can’t get him to push up from the bed late at night. Was the hospital bed a mistake? I remember my mother as she aged couldn’t sleep in a bed at all and slept in a chair which I never thought twice about. As you can tell from my rambling I’m quite frustrated as all I want is his comfort and well being . Has anyone else had this problem. Any (kind) advice would be appreciated.

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I'm guessing that if he's now in a hospital bed, that the head and foot of it raises, along with the whole bed itself right? I would first make sure that the bed itself is at the level he needs to be able to comfortably place his feet on the floor before he tries to push himself up. And putting the head of the bed all the way up might also help him. You can also use a gait belt to assist him as well. They are not difficult to use. You can watch a YouTube video if you need to see how to use one.
Also he would probably do better at this point, using a lift chair, rather than a regular recliner. With that it will lift him to just about standing, and make both your lives much easier. Wishing you the best.
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I deliberately and forcefully caused my mother to have a pressure sore on her heel that I was POSITIVE would kill her and that it would be my fault., so trust me, it’s not just you trying to figure this out.

Is the hospital bed set as low (or high) as he needs to perform his maximum push?

Could it be his own Circadian rhythm that’s working against the two of you? Might he be so sound asleep by the time he has to move that he just can’t?

Do they make small alternate air pressure pillows that could be used as a small mattress under him if he were sleeping overnight in his lounger?

The ultimate solution for my mother was onion slices. I DO NOT RECOMMEND THIS, but darned if it didn’t work for the aide we hired. Just putting it out there that there may be some off beat solution right around the corner....
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This is very frustrating! - and it is not your fault and not his fault, for the following reasons:

Late at night he is less alert.
He is not already focused on his PT session.
You are not wearing uniform.
You are probably not using the same vocabulary.
I doubt if the light is as bright.
I think it's very unlikely that your body language, pattern of speech and spoken directions are exactly the same as the PTs.

All of which would contribute to DH's being less able to follow directions at two in the morning.

To be fair, I'm not sure I'd be able to follow directions at two in the morning...

However. Why not ask the PT to watch you prompting your husband to get up and off the bed? - then if there are any glitches or key differences, she can correct you.
For this to work, though, you will have to be patient with yourself and thick-skinned about criticism - invite it, don't hurry past it!

What I usually see with spouses and children engaged in "moving and handling" routines is that: they rapid-fire and repeat instructions if the person doesn't immediately get it right; they are too quick to intervene physically; they talk too loudly and their voices rise in tone; they give commands which seem clear until you act them out but are actually ambiguous.

Where is the routine going wrong? Is he unable to:
sit up
bring his legs over the edge of the bed
sit up on the edge of the bed
place his feet
place his hands
push up to stand

Does he have any kind of equipment for mobilising, like a bed stick or a grab bar?

I've had some success with asking the person to copy me, then literally doing what I want him to do.

I also had to give up with one client after I'd tried every approach I could possibly think of. I sighed deeply and sat down slumped next to him. At which point with no prompting at all he simply stood up and took hold of his walking frame.

The hospital bed was not a mistake. You are not making any mistakes. You and he will find the way that suits you :)
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Thank you all for your very helpful responses given so kindly and compassionately. Countrymouse you’re so right about following directions at 2 in the morning . Probably I can’t give them very well at that hour as well .
Thank you AnnReid for that first paragraph to show me I’m not the only one blaming myself for things beyond my control .And funkygrandma59 a lift chair is a great idea .
Just getting my dilemma out there and seeing the answers to it has eased my heart and my mind and I thank you . I’m hoping when the nurse comes today she’ll confirm that the pressure sore is doing well and when I see the PT Tuesday I will definitely ask her to step back and watch how I’m doing things . I have a feeling my tone is a bit too sympathetic and maybe I need to be a bit more firm . Who knows exactly right ?
Thank you .
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My MIL preferred a recliner because she suffered from back and hip pain.

You need to tell PT their suggestion is not working. Because of the pain your husband suffers he is unable to turn himself and can't get out of the bed. He is much more comfortable in his recliner and sleeps better.

My Moms PT made suggestions too, some I took, some I dismissed. One was the bathroom Mom used. It had been a powder room and we added a shower stall. The door was small. She had to go in sideways with her walker.. OT suggested widening the door and making it a pocket door. Well that wouldn't work because the heater vent was on the same wall. Would have been a major job and we just put out 7k for the powder room to be remodeled. It involved our laundry room too. Ended up Mom did alright getting around her room without a walker.

Your husband has Dementia. He doesn't remember how to do it and you should not strain to help him. Do the best you can. PT is just temporary, right. Learn how to care for the bedsore, he could get this lying in a bed, and when PT is gone do what works for you and husband.
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JoAnn29 you are very wise . I think we tend to take the advice of the professionals as gospel and maybe as the individual’s caregiver we need to learn what to take to heart and what to discard as probably we do know our situation better than anyone . Thank you .
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Dear "Somethingelsa,"

When my mom was released from the hospital/rehab facility in May after having COVID, severe dehydration/UTI along with bi-lateral pneumonia, hospice came into the picture. She became bedbound due to lack of eating (she was completely mobile up to that point and is 95 with Alzheimer's). Then the bed sores started to develop while lying in the hospital bed they had set up upon move-in.

She had level 2 sores and I know once they get too bad, they are nearly impossible to heal. We just had gotten a new MC Director who wanted me to change hospice companies because the one I had wanted to wait until she reached a level 3 bedsore. She didn't believe in that. What she wanted was a hospice company who would provide a low air loss mattress and she gave me the name of two as well as having called them to see if they would provide one. They both did. I changed companies and my mom was able heal completely.

The facility gave her a recliner but, she doesn't like to sit in it and has fallen trying to get out of it shortly after they put her in it.

My mom was completely mobile before all these things happened but, now 95% of the time she wants to stay in bed. I know she is very tired and it's a real effort for them to get her up and into a wheelchair just to go to the dining room. She is on her third P/T and O/T company. This one is really wanting to work with her to the point they have now scheduled them around her mealtime so they only have to get her up one time. They do the therapy and then take her to the dining room for a meal.

When hospice had to discharge her from their services, my husband and I bought a Tempurpedic Adjustable Bed. If she is lower than she should be, they grab her bed sheet that's under her and use that to pull her up into a more comfortable position. This is done just by one person because they have enough leverage with the sheet to move her so she's a little more in an upright position.

I hope you are able to come up with something to help your husband!
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“NobodyGetsIt”.........That’s the best name I’ve seen !!!
The healthcare nurse today was very encouraged by how well his sore is healing and explained again how common they are when you don’t move around enough so I’m realizing the hospital bed is no guarantee. Your reply and all the others helped me to see that I need to do what works for our particular situation and unless you’re us
“ nobody gets it “
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NobodyGetsIt Jan 2021
"Somethingelsa,"

I'm glad your nurse was encouraged to see how well your husband's bedsore is healing. Even though we don't want them to get sores at all, there's a little relief knowing how common they really are. In all actuality, there's no guarantees about "anything" in life period. When my mom lived in her previous ALF she had her own queen bed from her house. When I noticed she was staying in bed longer, I bought a gel pressure topper at least 3-4" thick to put on her bed. I think it can go up to 5" but, I wasn't sure if her bedding would fit over it at that point. She really liked it.

As I've often said, there's no caregiver's "step-by-step handbook" and there's no "one-size fits all" solutions. People come to the forum and ask for help/advice/suggestions (in your case you asked for "kind" ones at that) and it's up to them to read through each answer taking what they like or feel is at least worth a try and discard the rest. No two situations are alike even if there are some similarities because no two people are alike.

This is the first forum/social media platform I've ever been on and I'm glad you like my screenname. I'm an only child (58) to depression era parents with my mom's remaining siblings ranging in ages from 75-90 who all live in other states. They took care of spouses in their homes and one cousin brought my aunt and uncle into hers for several years. Whenever we had a crisis with no support, my husband and I would always be upset and say (rather loudly I might add) "NOBODY GETS IT!" and that's what I went with.

Blessings to you as you forge ahead in this journey!
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NobodyGetsIt you are very sweet and this old lady appreciates your kindness and empathy . That’s all we need to help us through things isn’t it .
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NobodyGetsIt Jan 2021
"Somethingelsa,"

With all the stressors of life in general and then add to that taking care of a loved one when they can no longer care for themselves a little kindness, understanding and empathy go a long, long way.

Being on the forum since July, I've read so many heartbreaking, gut-wrenching stories and situations that it's helped me to be grateful with my own situation and in my own journey.

Thank you for the sentiment (I hope you got my message I sent you a few days ago about your dog)!
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CountryMouse has broken down the process well.
Can he get to the bed edge?
Can his sit himself up? Is he getting stuck from there?

If so, I would try with his walker in front. Feet well positioned. One hand to push up from the bed, the other hand already on the walker, lean shoulders over toes, forward & up. If he can sit with stabilty on the bed, (holding the walker), then a little more height from the whole bed may nearly stand him.

Just remember to lower the bed to normal before he gets back in.
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Somethingelsa Jan 2021
He cannot seem to sit himself up . If he could do that I know he could push himself up to the Walker . The PT showed both of us how he needs to use his hands to sit himself up and that’s what he just can’t seem to do in the middle of the night . He doesn’t seem to have the understanding or the strength to get that concept . She even made me lie down to see that you can’t sit up in the bed without using your hands to help .
Oh well when she comes this week we’ll try again but at this point he is happy and comfortable on his recliner and I’m shifting him around and making him get up and walk more so maybe the answer is to just roll with it and do what works .
thank you so much for your suggestions . Everyone has been so helpful .
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Just a small idea. If your phone allows, video the therapist getting him up.
Is she taller than you? Speak faster or slower or louder or lower than you do?
Where does she stand? At the head of the bed, near the foot? By his side? Close to the bed or across the room?
What are the words used that your DH responds to?
So, just think about it very methodically. Watch the video for the smallest detail. Perhaps notice how long it takes for him to complete each movement. Maybe the PT can video you and then allow you to see yourself interacting with DH. She may be able to give you pointers that make sense to you after seeing yourself. Videoing is a great learning tool.
It is puzzling as to why he is able to get up with the PT but not with you. I’ve actually experienced this with my DH aunt, 94 and with dementia.

Once when her therapist asked her to walk to a chair across the room, she could not do it. I knew she walked past that chair every morning and night when she turned her Christmas tree lights off and on. But when he asked her if she could walk to that chair, something stopped her. She really struggled to take the tiniest steps. They had just walked together all over the house so it was really odd.
So notice the therapist words vs your words to see if you can find a key. The tangles in his brain may not allow him to follow one direction when he can another.
One last little thought. Perhaps write down the words the pt uses verbatim. Then you read each step to DH and dont say anything else until he’s completed that step and then read the next step.
Sorry if none of this is helpful.
You are obviously taking very good care of him.
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Somethingelsa Jan 2021
What a great idea ! I will video next visit . Thanks !!
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You say you have a hospital bed, so I don't understand why you can't just raise the head of the bed until he is upright and then pivot his legs to the floor? A bed cane or similar product

https://www.agingcare.com/products/bedcane-136322.htm

would give him something to grab.
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Yes that seems so simple and I truly wish it was as easy as that . I thought a hospital bed would make my problem like grouting up from bed easier and that was the first thing I attempted after the PT’s way did not work . However he is propped on his side and does not understand that he has to roll onto his back for me to raise the bed . He also cannot move his legs himself at that hour and protests when I try to do it . If it was just a physical issue we could deal with that one problem but it is an Alzheimer’s brain issue that has terrible sundowning issues all night and any direction I give is not understood . Thank you tho for your suggestion. I appreciate it .
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I think I see the issue: it's the transition from lying to sitting.

Blame the aging process. The core muscles weakens & arm strength fades.

Even IF he is on his back, nice & high up to the pillow, a hospital bed only bends so far. Won't be 90 degrees - and then maybe he can't sit upright on his own while you swing his legs around.

He can do this with 1 x assist in daylight & awake. But not in the dark & sleepy - now will need 2 x assist at night which is not possible.

So staying in bed & using bedpans & urinal bottles overnight may be the answer.

My relative (who lives alone) cannot get out of bed unaided anymore so relies on depends at night & an aide to arrive in the morning to get up.
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Somethingelsa Feb 2021
YES !! You got it and used the perfect and correct word .
Transition !! I love that you grasped the issue like that . You are also right about the hospital bed and his swinging his legs around . Your post and my morning cup of coffee while DH is still sleeping soundly on his recliner has made my day start off well .
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My 96 yr old Dad loves his new recliner and has chosen to sleep on it instead of his bed.

It has been one year now and he's never had a bed sore.

He keeps in the lying position with his feet up so to keep less pressure on his butt then if sitting.

It also keeps his feet from swelling keeping them elevated.

The recliner chair purchased was tge one with the hand held remote that makes the chair sit and lay back. This particular chair bottom goes down at a slant that help make it easier for him getting in and out of the recliner chair to a standing position to his walker.

Hospital beds are awful.

They are very uncomfortable even when you have a thick gel pad on it.

Just try it yourself like l did and you'll understand.

The Hispital bed I purchased was a waste of money.

Let him sleep in his Recliner and besides the pillow for his butt, also use a nice comfy fitting single bed topper. A Size Twin fits My Dad's Recliner perfectly.

Prayers
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Somethingelsa Feb 2021
Great suggestions ! Thanks
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The problem is not bed versus recliner but lack of movement that causes a pressure sore. If he moves in his recliner at night, it won't be a problem. Does his bed have an overhead rail to help him lift and move? If not maybe rent one for a month, get PT to teach you/him how to use it, and give it a trial use. The goal is for him to move more and stay off the fragile area on his back. Also talk with his doctor about managing his knee, neck and back pain better. Pain can make it harder to move and concentrate, especially at night when one is tired.
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It depends on the type of hospital bed. If it is like the ones in the hospital, they are extremely hard to stand from for older people. The ones like a single bed with quarter guard rails are easier. My mom has to use a walker to get off her bed. I didn’t roll her, she slept on her back. During the day we stood several times. A good cushion and lots of Desitine works wonders. I know a lot of elders that sleep better in the recliner. Keep the bed you may need to sleep there some evenings in the future.
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A "bed that moves" often does little to help those with bed mobility problems. A good quality, firm mattress combined with sturdy things to grab is often the solution. Parkinsons especially is horrible as in most cases the person can not roll over/reposition themselves either (and nocturia is causing them to frequent the bathroom many times a night). I have spent the last ten years helping people with bed mobility problems- check out "Friendly Beds" for ideas to help.
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Mom last 6 months of life pulled muscle in back, breathing issues, etc. I have recliner that lays full flat and comes all the way forward to assist in standing. (Motorized - heat settings and massage seatings, too)She preferred to sleep in chair (She was very small and chair is very large) With pillows positioned to alleviate pressure - this worked well for her. Hospital bed was a joke. Recliner saved my back from having to assist her up and down. (She lived to 1 month short of 104).
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Somethingelsa Feb 2021
At this point I’m almost at the point of totally agreeing with you about the hospital bed . I did order him a lift chair so we’ll see how that works out .
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My father had same problem, he kept falling getting out of his regular bed and when mom & dad moved from Independent to AL because of his constantly falling (I'm sure his bones were made of rubber from the number of times he fell), they had a hospital bed brought in for him. They would adjust it to his liking, then he'd fiddle with it and be uncomfortable.

He too slept in his recliner starting while in Independent and traded out his manual recliner with a used chair lift. The doctors and nurses also didn't want him sleeping in the chair. He also got a pressure sore. It was suggested we get a chair pad for him to relieve it. While at VA for his hearing aids, I asked about chair pads. Bless them for they just gave him one - It was plastic, filled with air and had sealed holes throughout which worked. I don't know what the cushion was called.

He continued to sleep in his chair until he went to the SNF. He was on hospice by then and they provided a bed with the appropriate mattress.

Long story short the hospice nurse (while in AL) said his sleeping in the chair was fine. Just find a cushion that will keep him from getting pressure sores.
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Somethingelsa Feb 2021
Yes thank you . We ordered a roho cushion from Amazon which sounds like what you just described . Nurse just left and said pressure sore is healing well . PT is on her way and I will show her exactly what is going on again and video her getting him up .
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If you have a hospital bed, will the back go up high enough to get him into a sitting position? (I'm sure you've tried that, but had to ask). Then all he'd have to do is put legs/feet on the floor. If the bed did not come with a rail, get one. Once you have him in sitting position he would have something to hang on to in order to get to the right position to prepare to stand.

I know a lot of people who sleep in recliner. I did it for a very long time because laying flat in a bed was not comfortable. They also have recliners that go all the way to a laying down position that would help relieve pressure. Chairs have 2 arms to push against when standing, so I can understand why it might be more difficult to rise from a bed. I've also seen a bed on the internet that goes up to sitting position and turns to exit - just like a chair. Search for: ActiveCare™ Standard Rotating Pivot Hospital Bed. More than likely, pricey, but may be a huge help now and in the future.
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Raise the height of the bed first so it is comfortable for you. Then raise the head of the bed to a sitting position. When he's sitting this way, slide his legs over the side of the bed as much as you can. Then turn his upper body (he can help with this) so he's sitting on the edge of the bed. You may have to support his back if he can't sit up on his own anymore. Have the walker in front of him and have him grasp the handles and stand up. With the bed raised higher it will be easier for him to stand with assistance.
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If he is in less pain in the recliner, let him be. I have had to use it during times of need and did very well. There are special pillows for the recliners where there is an opening in the butt area so that there is NO pressure and it will not cause problems. Look into that. Please leave him in peace, and you do, by letting him use the recliner.
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Somethingelsa: Imho, perhaps your DH is less tired during the day when the PT is there and therefore, is able to maneuver off the bed. Then at night he is tired and may not be able to do so. Also, if he is able to sleep in the bed with a prop up of pillows/bed, he may do better. Prayers sent.
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If you can keep ahead of the pressure sore and keep it healing, let him sleep in the recliner. It would seem like the hospital bed with upper portion raised would be similar to the recliner, but maybe it does not "fit" as well with his knee, back and neck pains. If the recliner is where he can sleep, then the recliner it is.
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Lord YES!
My mom has trouble transitioning from bed to wheelchair, wheelchair to toilet, toilet to wheelchair and wheelchair back to bed again. It can take an hour for a bathroom trip in the middle of the night. To me, it seems like the issue is motor planning or muscle memory more than strength or pain. It is worse at night, because she is groggy. I'll tell her over and over again to reach for the grab bar (right hand, not left or both) then I coach her to stand up... She just looks at me like I asked her to fly to the moon.
For us, since I and my mom's caregivers are all pretty strong, and my mom is probably less than 100 pounds these days, we often assist/lift her - a PT taught me how.
This is something you can talk to the PT about, and think outside the box. Does he really need to go to the bathroom? Can he use a urinal in bed? Diapers? Can you get a grab bar above the bed?
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Having cared for my sons behind when he was dying with aids i can appreciate your surprise intimacy with your husbands.

my son also had a sore that with daily care began to heal before he died. The hospice nurse didnt think this would happen. The procedure for care was simple.

my husband who is healthy sleeps in a recliner every night since he is heavy and lying flat is uncomfortable for him. We each get a good nights sleep too.

it sounds like youre going to have continuing bedsores to care for so it seems to me that letting him sleep comfortably may be the most important thing along with your good wound care.
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Somethingelsa Feb 2021
Good and wise advice and I thank you . I think part of the problem is my questioning my own good judgement which I never used
to do . My overthinking tires me more than the actual caregiving sometimes .
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my mother has a small pressure sore in between her butt cheek as well, she said it probably came from "scooting" herself off the recliner to stand up.  so my brother and I got her a recliner than can rise and lower (almost to a bed) which has helped. but the sore takes a very long time to heal. we have used zinc oxide and now a silver nitrate salve with a band-aid for sensitive skin.  My mother sleeps in the bed but when she gets up at night to use bathroom, she says she goes out to the recliner.  its true they can't move from side to side, but if your hubby can sleep in the bed for at least half the night that is good, then move to the chair.  does the bed have side rails that he could use to help lift himself up?  not sure how the therapist told them to get up, but he can prop up on elbow and push up with other hand.  wishing you luck in this matter.
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I overthink too somethingelsa so i understand. In fact ive been told by several people that i think too much and i wonder what THEY do with their spare time !

i think we worry too much and body chemistry blocks our thinking and so we cant come up with a good idea ... what if im wrong !!!

you want to do what's right and do something that works and so you asked questions.

thats what the site is for ... we can give suggestions and options and make remarks that can be just what the questioner needs.

so try to relax. We’re here for each other.
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