We're in Hospice care now

16 years ago

Hi everyone,

I haven't posted in a while. People were so helpful when I asked about leaving my 93 year old Mom home alone for short times and I also asked about ideas to keep her active. I haven't had much time to post since things have changed here with Mom's care.

Back in June, Mom fell while getting up to use the potty chair right next to her. She knew she wasn't allowed to get up alone, but thought she could do it. We heard a loud crash and found her half way across the room on the floor. She ended up fracturing the first thoracic vertebra and hitting her head hard. It did not involve the spinal cord, but there was pain. I must say looking back, that the hospital didn't give us a good idea of what to expect; didn't even put a collar on her to go home after the ER visit. We had trouble with pain meds messing her up with hallucinations and weird stuff, so we stopped them and used acetaminophen.

She had Home Health Care physical and occupational therapists and started to make some progress. Then she plateaued and needed O2 for low oxygen levels. Confusion got worse and over the course of the last three months has gone down hill rather sharply. On Sept.28, the exact 7 year anniversary of us moving her in, she entered Hospice care. Her dementia is very severe now. We have a hoyer lift since she is no longer strong enough to walk the 5 steps, with 2 people supporting her, to the bed.

She has crawled over and around the bed rails in trying to act out the vivid dreams she was having. In August, she was diagnosed with severe obstructive sleep apnea and we tried a bi-pap machine. She tolerated it some and when she did wear it, we saw an improvement in the mental and physical energy. I wasn't getting much sleep because she would knock it loose at night and I would readjust it several times during the night. We finally decided that it was causing more problems than it was helping.

In the last week she has cut down eating greatly, only taking in soft foods. I have found Beneprotein, which is a protein powder that has no flavor, so I can add that to anything she will eat. I add Benefiber and Thick-it to get more of what she needs into her.

The hardest part is the mental part...for both of us. It is hard constantly trying to divert her from wanting to go home, asking about her parents, having a house just like this one, but 4 blocks away, that she wants to take her things to and live. She has gotten much more agitated and we have had to increase her meds to control it.

The Hospice doctor told us that if she continues her decline, we probably won't have her for Thanksgiving. DH has been wonderful and I know that it is extra hard on him since I can barely leave her room in the evening.

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Comments (7)

christmasbaby
Original Author
16 years ago
Sorry ...I hit the wrong button...that's where my brain is.

As careful as we tried to be to keep mom safe, she fell anyway. Grandkids are starting to come for visits, but there is no guarantee she will know them. They waited too long. I hope others on this site with ailing family members will encourage visits before it is too late.

Anyway, God has been good to us and allowed opportunities to talk about the really important things of life and death with her. His peace and strength are evident and we are trying to serve Him and her in the time she has left.
falldowngobump
16 years ago
Wow, you really have your hands full right now. It sounds as though you as doing everything you can do for her, to make her safe and comfortable. You are not in an easy spot right now, but you are being the best daughter you can possibly be. It's amazing and pretty scary how fast they can decline and how one thing going wrong can become six. My thoughts and prayers are with you and your family. Hang in there and keep us posted as much as you can.
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HOME HEALTH CARE - this is a service that can also be provided by a home health care agency AND PAID FOR BY MEDICARE....Mom had that for several years, however, it is very limited in what they provide. When she had that level (home health care paid for by Medicare) she was still able to get around with a Scooter, feed herself, use the toilet; as her abilities declined and after a ten day hospitalization with massive bladder, kidney and lung infections, her urologist stated that we needed to consider Hospice care. I contacted the agency we use (Heartland) to ask what the requirements were....did it mean six months to live? They told me NO, you needed to have an incurable condition - they told me they had folks who had been clients for more than five years. I am in Texas - you may find it different in your state, but Medicare did pay for home health services for several years prior to hospice; the rules may have changed on home health care since she has gone to hospice. If you have a loved one needing more care than the family can provide, your best bet is to simply call one of the agencies in your area that provide HOME HEALTH CARE and HOSPICE CARE. Ask them what qualifications you need to be accepted. Once you know if you qualify for either one, then ask them what the regulations are regarding care....that is your best bet. Carolyn who is now dealing with a 95 year old father who is feeling guilty over putting wife of 71 years in a nursing hom; Mom aged 91 who cannot do ANYTHING for herself, and who has some dementia and DH age 58 who is fighting esophageal cancer. Does anyone have the timetable for when I am allowed to have my nervous breakdown?
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Mari, Hi! Sounds like I'm in a similar position to your sister. In October I was diagnosed with a rare and aggressive cancer that had spread. At our first meeting with the oncologist i was told that this is not a curable cancer and that with no treatment I would live 6 - 9 months and with treatment 9 - 12. I was not a candidate for surgery or radiation since the cancer had spread so much. The oncologist was proposing an aggressive chemo that had only a 40% response rate. 2 year survival less than 5%. However he added that what I had going for me was that I was young (44) and in great health (other than this little problem) and that someone had to be in the 5%. Hospice was never mentioned. I began chemo on 10/17 and just finished the 6th round (it will go on indefinately). However the size of my tumors have shrunk 60% since diagnosis and no new ones. So far I'm a success story. The doctor is even talking about giving me the "summer off" if I continue to respond in this way. While the chemo is certainly no picnic; it is not as bad as I thought. Nausea/vomiting is 100% controlled by medication; so that is not a problem. Being bald is the least of my problems and hey I don't have to shave my legs. The worst is the fatigue and some bone/muscle pain 9bedrest and Tylenol help but out of every 21 day chemo cycle I feel more or less like myself for about half the days. Anyway... I don't know if my situation is relevant to your sisters but I wanted to give you another perspective. Everything I have heard about hospice has been wonderful and won't hesitate when the time comes. My thoughts and prayers are with you and your family.
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I should take my own advice and scroll on by, but feel the need to say something. Elmer, you often like to call out joyfulguy. Not sure why it's your job to do so, when others don't, but continually calling him out for what you deem inappropriate is sort of being a bully. No one else is calling him out - if people aren't liking what he's posting, they just scroll on by. It's disrespectful to continually correct him - publicly, and is probably embarrassing for him. Suggesting he develop more personal dignity, self respect, and respect for others - we don't know him so we don't his level of personal dignity and self respect, and respect for others - it's typically you who calls him out, so I presume others aren't feeling disrespected. And again, if anyone is, they're just scrolling by. Your latest comments to him I think are the harshest I've read. It's the internet. Just scroll on by. Not necessary to dictate how he should behave. No one else seems to care except you. Your turn. I'm confident my comments will generate a lecturing response to me. I should have privately messaged you rather than posting publicly, but don't have messages enabled and don't want to turn on that feature.
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shambo
16 years ago
Christmas, I just want to add my thoughts and prayers too. I know this is a difficult time for you, but you seem to be handling it with wonderful grace under pressure. I can certainly identify with your last sentence. My mom is in a memory care unit. Her mind is certainly not what it was, but I try to remind her of her strong faith. I keep a hymnal & Bible in her room so that I can sing to her and read portions of Scripture. I choose songs that I think she might remember. The same with the Bible verses. It's so encouraging to me when she joins in on a chorus or finishes the last few words of a Psalm. You're so right -- those are the really important things of life. May God be with you as you help your mom make her final journey here on earth.
lapcat
16 years ago
I just wanted to say God bless you and your husband and your mother. I hope the last month(s) will serve to bring you all closure and closer. You are in my thoughts and prayers.

C.
christmasbaby
Original Author
16 years ago
Thanks for the kind words and thoughts and prayers. Mom is failing faster than was projected. We are probably looking at a weeks at most...unless she breaks out of this pattern of decline. The nurse comes this morning, so we will know more then. The terminal agitation is ramping up.

Several grandchildren were in this weekend. She went from actually having a good conversation with one on Thursday to blank stares at the ceiling and incoherent speech on Friday. The oldest and most faithful grandson flew in from Boston to experience Friday only to come Saturday morning, and after she got oriented, he was blessed with a real conversation with her. They said their "I love yous". By Sunday when we returned from church early afternoon, we saw the the huge decline. Two more grandkids came and had to say their tearful goodbyes without Mom being very aware. A married grandson and his wife, from 5 hours away, saw her Sunday morning and my brother thinks mom knew they were there.

Systems are starting to shut down more, but we are still feeling blessed to be able to have her here to care for. This is so hard, but still, the strength God gives us along with the peace and wisdom, is a joy to think about and experience.

Trusting God for His plan,
Terri
onlyone
16 years ago
My heart goes out to you and your family during this time. I know how terribly hard it is to say good-bye to a mother. It is so nice that the grand children are coming to visit, and yes, she does know that they are there, and she knows that she is loved.

God bless,
mariend
16 years ago
Just sending those hugs and prayers to handle this time in her life and yours. Maybe just quietly reading a short soothing poem, soft music, or even pictures of birds, flowers, and scenes will help.
Occasionally a single picture will bring back a memory to both the person who is ill and those comforting them for a fleeting momement.
I send you the best.

We're in Hospice care now

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christmasbaby
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falldowngobump

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We're in Hospice care now

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christmasbabyOriginal Author

falldowngobump

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shambo

lapcat

christmasbabyOriginal Author

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christmasbaby
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christmasbaby
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