After 1 month, hospice says Ma is getting better & want to send her home. Any tips, advice on home hospice for her?

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Don't want a nursing home! Ma had to go the hospital for her sudden onset bedsores & a UTI over a month ago, after living with me for almost 6 years. Up to that point she was receiving nursing care 2x weekly @ home. Her Dr determined she was hospice ready, and did not expect her to live much longer. She is currently in a hospice home for only 1 month so far, and they say her condition is improving, the bedsores are getting better, and her appetite is better, and they want to re-evaluate her staying on there. I am guessing she will probably be sent home soon. Her Dr already approved at-home hospice. Need some advice from those who experienced this, and the best way to handle her being home again. I am so afraid she will begin to decline again, given the excellent care from many hands she has been receiving at the hospice home. I understand the nature of hospice is to care for the dying, so I understand where they are coming from, but I have read of many cases where patients get better @ hospice, then start to decline once they are home again. I am trying to process all of this - I want the best for her, and was getting prepared for the fact that she would probably pass on there, now I feel afraid that I may be responsible for her declining once she comes home again, despite my best intentions. I just feel rushed - after finally getting used to the idea of her being @ hospice, and missing her being with me at home. Yet I was hoping she could indeed come home to me - maybe just not this quickly? Like I said - I was just coming to accept that she was there - they say it takes 3 weeks to adjust to a new situation, and I was finally coming to peace with her not being home with me. I did go thru a lot of crying every time I would go into her empty room. She will continue to have the nurse address her bedsores, and now will also qualify for some home health aides under at-home hospice. Absolutely do not want to consider a nursing home for her. She is 97, and has dementia/Alzheimer's and cannot communicate in any meaningful way, and is bedridden, cannot walk. Am afraid they will want her gone asap, so I am scrambling to get everything done at home for her again. HELP!

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Dear LynneteD.........I know you will not regret giving it this effort !!!
I hope you get as good a Hospice staff as I had with VITAS. And do remember... you are in charge, Hospice is there to help, give advice, NOT to take over... which they tried at times to do... but mostly due to the regulations they are forced to observe... but there are other ways to get what you think is right for your Mom.by checking with the Doc she had prior to hospice...
One little hint.... Aides are taught to bathe patients by using a wet washcloth with which to FIRST wash the eyes, each eye is supposed to be washed with a FRESH, UNUSED part of the washcloth, before washing the rest of the face...neck... and so on down... rinsing the washcloth frequently in the water of the washbowl.... that makes that water soapy. Dirty...
BUT... in my humble opinion I just cannot justify washing the skin of a patient, then rinsing that dirty cloth in the washbasin over +over... and returning that washcloth to the body to spread the somewhat diluted germs all over the body with each successive washcloth rinse.... even having to trip to the bathroom to get fresh water once or twice, but still using the same unclean washcloth....
While working in hospitals and NSG-Homes I had no choice to follow that procedure... since these places are notoriously short of washcloth-supply.
So I insisted that my Hospice aides use a washcloth, and when ready to rinse it... I had them dump it into a bowl, and use a DRY, FRESH washcloth to wet and rinse off the soap, and again dump it, and use a fresh one for the the next round - at every point, by supplying them with 12 plus clean washcloths... and telling them I did not want any washcloth used more than once... that My washer had plenty of room to wash clean any number of washcloths... between baths.
To accomplish that I went to Dollar Store and bought TWO bundles of 10 or 12 white washcloths... as the color white allows you to see dirt sooner + better than colored washcloth’s ... and can be bleached if needed.
I always stayed around at bath-time and helped, tried to make funny conversation, and made sure the Aide or I washed and WELL DRIED between the toes to discourage fungal infections there... since I have seen aides to wash feet without ever cleaning between the toes.
I told each Aide... if you keep using fresh washcloths, it will keep you from tripping to the bathroom to change the water, as you only use that water to initially wet the cloth, before using soap on it, or using to rinse off soap !!!.... Most of them had no trouble with that routine.
I felt that Mom, and later Father, had a better – cleaner bath this way.....
I know – there is a lot to think about in home-care, but after a couple of weeks it will become routine..... take care.......and I wish you well !!!
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beautifully stated Samantha - thank you. Some very thought provoking realities. I am in a bit of a state of confusion now - as I really thought she was entitled to the 3 months of hospice - but was told that was not the case since she is improving - but for how long? Have no idea of how the release from this hospice home will affect her - since she has been thriving. thanks for your understanding & empathy. God bless you & your Mom. Prayers for your family.
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Dear Lynette - Once a person is on hospice, you forfeit your authority to call 911. Hospice services may be revoked at any time by signing a simple 'Revocation Form' that will be included in the information provided. However, if you revoke the services; all the equipment is removed from the home and you will have to ask your doctor for a doctor's order to have it re-delivered. There are other issues with that process that I will not get into during this current topic of 'care'. Like so many others in our position, I have been caring for my mother for several years now. So - when she was in a hospital for co-morbidities & released to Skilled Nursing for post-hospitalization rehab, I thought it would be much like the previous stays. But her condition deteriorated and once the SNF determined her status to be 'hospice' - she no longer qualified for 're-hab' under Medicare and she was immediately discharged to home as we could not afford the $7500/mo (here in Calif) SNF fees for room & board that Medicare doesn't cover under the hospice benefit. The hospice providers offered to come more, but I didn't want all the traffic and strangers in the home. It got to be more of a scheduling nightmare than it was worth. Thankfully, mother does not have any sores. But with all the turning and re-positioning, we both get our exercise :). She does not have diabetes, so perhaps that has something to do with the health of her skin? She was taken off Warfarin (which she was on for 30 yrs) and I thought surely she would have a stroke as a result - but it's been 60 days without an event. Once home from the SNF she improved briefly (very possibly a result of being in familiar surroundings) but once settled in - she started to deteriorate; so be prepared for this possibility and don't blame yourself. This is a very real part of the hospice journey. When the person returns home, they may be in denial of the situation, especially in a demented state where they travel to different time zones in life. Then it will get more and more difficult for her to chew - and eventually swallow. Use short glasses with straws (you'll have to cut the straws you buy) for liquids and keep them always nearby. Try to select clear,or near-clear liquids because there will be spills and red fruit punch is not something you want on the bed. :) Stick with soft foods (ie) apple sauce, soups are good and ice cream :) The change in eating will affect BM's. Don't worry if she doesn't have a BM for 3 days. But then - give her something. The hospice gave me stool softeners, but I found that 2Ts of Milk of Magnesia was plenty. If you give something too strong, you'll have other problems. My mother has stopped eating now, but I still put things in front of her - just in case. And she coughs when she tries to swallow water. Living with dying is a challenge that few are prepared to undertake. You will get tired, confused and frustrated. You will be forced to face your own mortality on a daily basis. And yes - you will make mistakes; plenty of them. You will learn something new every day; whether you wanted to - or not. :) We just do the best we can each day and promise ourselves that we will try harder tomorrow.
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Danamovedon - wow - great info!!! thanks so much. I will definitely print out that. They have been using some flagyl(sp?) antibiotic crystals in her wounds, and that seemed to really accelerate the healing. Never really thought she'd come back - but I hope & pray we'll be able to do a good job here at home for her. No nursing home for her.
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Thanks SamanthaW! Good points & info. I'm 64 - so not that younger than you. Supposedly the home health aides will come 4-5x a week, plus her regular nurse 2x. They said they will be supplying a lot - including an alternating pressure mattress, and her diapers & all her wound care needs - what ese - I don't know. She's been incontinent for about 4 years but up to last summer - she could walk some with a walker. Since she was in hospital for 2 weeks last August - they never bother to get her up & walking - so she lost that ability. So I have been managing to take care of her up till January when she developed bedsores overnite it seemed. I contacted her Dr & she started getting nurse visits, but the sores just got out of control & she also had a bad UTI.

Yes - you are so right - GOD is in control. I sometimes forget that - as I try to do it all by myself. Thanks again
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Dear Lynette - My 95-yr-old (dementia) mother has been home on hospice supervision for 40 days now. It was confusing at first, so I understand your thoughts. The Skilled Nursing Facility will/should not release your mom until her current treatable conditions are resolved (ie) UTI & bedsores. If possible, Hospice will evaluate your mom while she is still in the SNF to see what kinds of equipment she/you will need at home to continue her care. Hospice provides some services, but YOU will be her caregiver 99% of the time, so you will want additional help from family if possible. 'DiHilBe' suggested pad inserts for urine absorption. I too use pads for my mom. I use 'TENA Serenity' pads. Hospice didn't provide those - so you may want to stock up on those b4 she comes home. You will be changing her diapers 3x/daily to start. Hospice will also provide a Home Health Aide to your home 3x weekly. They will change the bed, bathe your mom, brush teeth, etc. I'm 65, so the physical demands of adjusting a person in bed (that can't assist for themselves) is difficult and may start affecting your back. Be careful. At first - the situation feels overwhelming, but you are doing fine - and you will adjust to this too and in a month you will have defined your own routine. As her condition changes, your routine will change slightly too, so from here on out, there will be adjustments. All you can do is address each one as it comes and try not to stress over things, of which, you have no control. You are not the captain of the ship on this voyage; God is.
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2:59 PM 5/6/2015
Danamovedon.... Dana-move-don... took me a couple of seconds to understand that name... and just where is " Dana moving Don " to...??? ... just kidding... ... You are so right.. though... there are ways to heal bedsores....
LynetteD... my Mom came home with bedsores, 2 of them the size of my hand... HOSPICE called in a specialist.
That Dr. came to the house and showed me how to treat them with a lidocaine gel that would kill the pain fast... I had to mix it with OTC [OverTheCounter] Zinc salve, 50/50 I kept the info as I was so impressed with how fast this worked:: ---
Here it is straight from the Label::::
“ Rx: 100ml bottle of Lidocaine viscous 2%, 20mg/ml solution”... mixed 50/50 to “PLAIN” 40% Zinc-Oxide cream”
Not all Doctors know about this quick healing treatment... My own Internist did not, and was glad when I gave him a copy of the RX +Info.... Mom’s sores where healed in about 2 weeks, and we kept the treatment going longer just to ease pressure-point pain from lying on the back all the time...
IMPORTANT:: The lidocaine was Prescription:.... The Zinc is OTC. ... I was warned by the Doc to NOT buy Diaper Cream with Zinc... It contains fragrance, talc, and other ingredients, not needed or wanted for serious open wounds... Tell the pharmacist you want just the plain 40% Zinc salve and due to it’s limited shelf-life, he may have to order it....., and DO LOOK AT THE EXP.DATE: The chemical “ZINC” has a short life span, may have sat on the Store shelf too long ... So make sure the Exp.date is several months ahead of the day you are buying it...
The treatment itself: ...
1] tear off a square of Saran-wrap+place it on the fresh open, clean, Depend on a table
2] squeeze a dollar size dollop of Lidocaine and Zinc-salve in the center of the Saran square.
3] fold the saran-wrap exactly in ½ to cover the salves...
4] carefully squeeze to mix well and spread it out to cover ½ the size of the sore . SET ASIDE.
5] Clean patient, and place that fresh Depend under her,
6] carefully turn her to one side on the Depend to expose the sores
7] Split open the 2 half layers of saran-wrap and apply the cream-side to the sore
8] Carefully pat the creams into the sores to cover all and flatten all extra Saran-wrap onto the skin
9] Secure the Saran wrap with a gauze pad or clean piece of cloth, Flannel, washcloth, folded Handkerchief,
{All these cloths can be sterilized by running a very hot iron over them before applying]
10] or just close the Depend tightly over the Saran-wrap, if the sore is not large. Turn patient onto back.
Lying on the treatment will help lidocaine work into the skin to kill pain +extra Saran wrap will help keep urine away.
Depending on acuity, this treatment can be done once a day, or at every Depend change...
It only took a week to freshen this treatment with each Depend change, but soon we went to 2x qd [per day].
Any spill of the very sticky Zinc crème on skin can be removed with baby-oil... or any oily skin cream.... not water and soap, which would burn sore skin.
In the 1st few days I applied 2 extra period-pads inside the Depend between legs to avoid Urine-soaking the Depend close to the sores... which were hand size, due to the blood-thinner she was on. The Doc took her off that to speed the healing.
I do hope lots of folks become aware of this great treatment to spare their loved ones this pain. It PREVENTS, not just HEALS !!! ....please spread the news !!!..... I wish you all well !!!
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Thank you DHilBe for your compassionate & helpful answer. In answer to your question - Ma told me over & over again that she did NOT want to be in a nursing home - "you might as well kill me now!" was her reply to even the hint of going to one. She & I were always close, and even now - she says "yes" when I ask her if she wants to come home to live w/ me. Since she's been living w/ us - I tell her "you & I are partners, aren't we?" And - she always responded "YES!!" to the extent she could respond. So I know that she does belong w/ us, and even my husband is willing to help me w/ her - even though he has his own health issues. The Lord will get us all thru as a family, and help us, as He has always done. and yes, I also realize that this sudden upturn may only be fleeting,or that maybe the home thinks she is not dying, and wants to make room for someone that is truly dying. Although - at 97, how much time can she have anyway? I am afraid that if taken out too soon, she WILL decline at home, just given the physical trauma of moving her out of where she is now. But I may not have much to say, as they have their own criteria.
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Thank you very much Danamovedon {{hug}} I have been talking w/ her Dr & also the agency that has been involved w/ her hospice care. They said they will make sure all is in place b/4 she comes back home. We should know soon what's going to happen. Will let you know - thanks for your advice - it's GOOD & I will certainly heed it, as well as put it in the Lord's Hands.
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Oh dear LynetteD........ I can see how torn you are... You have had your Mom for 97 years... I can so feel with you...!!!
I had my Mom for 95 years... and she passed at home.... and I am glad we had her there ! The problem with Mom being in the NSG home is that Dad and I could not have been there holding her hand during her last hour, since it happened early a.m.....
Did your Mom ever express where she wanted to be in her last days..???
If she did not ever tell you... ask her now.... and look at her eyes... once she understands halfway..., she may not be able to tell you, ... but her eyes will express a slight intensity or smile... if she agrees... Give her time, keep stating things about “HOME” and give her time to realize it slowly... It may take several efforts – before the concept dawns in her tired mind, since she also may have internalized that she can not go home again.... Does your Mom express any pleased facial expression, when she sees you come to visit...??? Is she still able to reach for and hold your hand ??? Simplify the doubts you now have into the one thing :: ... After Mom has passed... you may not want to sit and tell yourself... “I wish I had done things differently”... Feeling guilty is not what your Mom would want to leave you with either.... I think you also need to realize that quite often improvement at that high age is by nature followed by a drop in condition and an eventual total decline... that neither you nor medical personnel can change... whether she is at home or at the Hospice unit... Many patients have that final improvement stage... that may last a few days or weeks before the final decline ... this depends on their medical acuity... It is in God’s and Nature's will !!!
Actually when I had Mom at home after her last NSG-Home stay... relatives and friends stopped in a lot more often than they would while in the NSG-Home....Actually no-one but Dad and I came to the NSG-Home.... and while Mom could not communicate much... I could see the smiles on her face... when her 4-yr. old great-granddaughter showed up in my house and hopped around and the newest baby just brightened her whole face, especially when we took the Hoyer-lift , set her into an easy chair supported by oodles of pillows, and then placed that newest great granddaughter into her arms... !!! YOU CAN ONLY DO THE BEST YOU KNOW HOW... and if the best is what pleases your MOM then you will have no regrets later... I would also invite and inform any relatives and friends : “ If you can arrange a visit and want to see her ... please do so soon...” There is NOTHING wrong with that announcement, as many folks may afterwards tell - that they wish they had Known to visit once more.... Also that is so much easier to do for all at your home than at a hospital setting ,with limited visiting hours+ where children and Babies are often disallowed!!! .. I have never seen an elderly patient who was not excited to see a young child... It really makes their day!!!
Of course it is a lot more work for you,,, yet consider the time factor... Those last 6 years I spent caring for my parents I would not trade for anything now looking back.... I do wish you well..and peace of mind...!!!
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