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So, It's been a really long time since I've posted here. I'll try to summarize. I am caring for my Mom with Alzheimer's, she lives 5 minutes away at a MC Home, plus I have another organization that helps me manage her care, decipher doctor visits, help with doctor visits etc. So within the last year Mom went from working out at the gym 3 times a week with a trainer and outings several days a week to barely walking with assistance from a rollator and having trouble un wrapping her fork and knife from the napkin at dinner. She has had a fairly steady decline both physically and cognitively. (They treated her for high ammonia levels, but that has not re-occurred and in fact recent blood work results were good across the board.)


I visited with her on Saturday during lunch and she seemed a little more confused, she kept folding and folding her napkin and I had to cut her food for her. Sunday evening they said she had thrown up several times and sent her off to the ER to check for GI bleeding. The ER was NOT fun, and very traumatic, they ran all sorts of tests and everything was fine, sent her back to the MC. Yesterday she barely ate and today she stayed in bed all day, only sitting up and drinking some soda when I showed up this evening.


She hasn't had her medicine since Sunday, she was very vacant and non verbal today, almost like a stroke maybe, I really don't know what's going on. However, they have decided the next step is to call in Hospice to help out, get her a hospital bed, and see what other measures we can do for her comfort. No one is suggesting this is end of life, but if she's not eating or drinking and can't take her medicine, where does that leave us?


I am now in unchartered waters and have no idea what to expect. It's quite depressing to see her so confused and scared. She hates when anyone touches her, wimpers like she is in pain, but is unable to really communicate what might be hurting.


Anyway, thanks for reading. Feel free to share your experiences or advice.

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JJ, so good to hear from you again!

I'm sorry that your mom has had this sudden decline. It does sound like maybe a stroke?

I can only share my experience. The only thing I ever promised my mom was "no pain". I included psychic pain in that equation. When she was beyond being able to tell us what hurt, we called in hospice and they gave her morphine. Previously, the NH had her on fairly high doses of non opioid pain killers but she was still grimacing and behaviorally expressing pain. The morphine gave her peace.

I hope you can find your way in this part of mom's journey.
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Hi Barb,
Thank you for the encouraging words. It about broke my heart when they were doing the catheter in the ER and she was screaming and crying...I could hear her down the hall and around the corner, and she was behind closed doors. My iwatch kept yelling at me that my heart rate was too high (duh).

I'm pretty bitter about the whole ER thing, and they were talking about sending her today too.

For what? She's no longer throwing up, all her blood work, urine and stool checked out OK. The CT scan of her stomach showed nothing, she doesn't have a fever. I feel like the one caregiver was totally judging me today, she said, "Your Mom isn't right" and I get that, but she has a progressive disease, a stomach bug, and hasn't had her meds in 3 days. The only thing I can think is that they might hook her up to some fluids to help prevent dehydration.

Clearly I'm a little lost here, and I appreciate your kind words, and I am glad you mentioned the morphine. So far they have been quite conservative with pain meds because of the increased fall risk, but if she's stopped walking (which she has since Sunday) then maybe the fall risk is now a non-issue.

Again, thank you.
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My situation might be a little different but same as yours at the same time I think. My 91 yr old mom no longer wants to live. The POLST form is for "comfort care" only. She was sent to the ER a few weeks ago for another UTI and I was called. Instead of reading the POLST form, they sent her for a CT scan, put a catheter in, and were about to administer insulin for her high blood sugar. I asked the nurse to read the POLST form that was right there on the counter and she said, " it isn't clear." Her wishes are clear as day.

Her treating dr said that might come a time when you have to request hospice for her and it was at the ER that night that I decided it was time. Her dr ordered the hospice and it's been a godsend for me. She will no longer have to go to dr appts, ER, or whatever as hospice will take care of all that.

So....what to expect. My mom is also in a care facility. Expect to sit down with the Hospice nurse as well as the Hospice care representative. There will be forms to sign and expectations to be discussed. They laid everything out for me and asked me several questions including communication timing and channels. They said that it was paid for by Medicare and that they would be evaluating my mom for care frequency and type.

Since I started Hospice for her 3 weeks ago, she is seen three times a week. They help her bathe and they evaluate her for pain and confusion. She is continuing her decline and the hospice nurses have been in communication with me via phone or text two times a week.

I know it's a relief for my mom to know that she doesn't have to get to a dr or ER in her weak state and it's a relief to me to know that I no longer have to take her appts.

Hope this helps.
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JJGood19 avatar
J
JJGood19 Oct 2019
Thank you for sharing.

I asked myself, why are they sending my Mom to the ER, the only thing wrong with her is Dementia, and nobody can fix that. All the tests and stuff are so traumatic. We have hit the point where ruling out "other" problems is no longer helpful...she just keeps declining and why do I want to preserve her body? So she can "enjoy" continuing to, literally, lose her mind?

That seems cruel, and I definitely don't want to be cruel.
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My dad has been in memory care facility for 2.5 years. Staff requested he get evaluated for Hospice because he has been dropping weight, falling often, and having some trouble feeding himself. He went under Hospice care a month ago. They provide extra hands-on help 3-4 days a week with necessary activities like bathing and helping him eat. He's also transitioned to use a walker, but that's pretty much been outside of the Hospice work. I don't think my dad is near-term terminal, I would not be surprised if he is still plugging along a year from now. The Hospice nurse tells me that if he declines to the point he's bedridden, Hospice will continue to provide more help and he would be eligible to go to one of two Hospice houses nearby.
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JJGood19 avatar
J
JJGood19 Oct 2019
Thank you for that info, I believe that is where we are at with Mom...she's rallied a bit, but she needs a little extra care.
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Mom has rallied this second half of the week. She back to shuffling around with the rollator as opposed to the wheel chair, but she's still not very verbal. She's eating again and taking her meds. I'm meeting with the first hospice group Sunday for an evaluation. I think I'm going to meet with three different companies before making a decision. And who knows, they might decide that since she's rallied, she might not fit their criteria.
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The MC facility where my inlaws are said we could have any hospice we wanted but they felt the main one they call does a good job so we went with them. I had confidence in their recommendation. I know that interviewing several hospice providers is recommended but this one provider has worked out well. I am very very happy with hospice services. For the first time, I have someone who I can discuss all the issues and possibilities of treatment with. I am a nurse but not a geriatric specialist so I don't know what the best thing to do is about the many situations I encounter with my inlaws who are 94 and 93 respectively. I see you have the same questions and thoughts as I did so this will be a great help to you . If the facility has a recommendations as to what one to use, I would take that and save yourself some time. The medical director of the hospice we are using is also one of the doctors who comes to the facility anyway so that has been helpful.
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J
JJGood19 Oct 2019
Thank you, Dogparkmomma for your input.

I have spoken to one hospice company and also heard good things about them, there's only one more I wanted to talk to, but the feedback from people "in the know" on both companies is positive.

Mom continues to yo-yo, back in the wheel chair, but speaking a few complete sentences. I think this is a good move for her, and I hope to be setting it by by the end of this week.
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My 92.5 year old mother has been to the ER more times than I can count in the past 8 years she's lived close to me. One time, I had to take her to the ER while dad was in the same hospital, upstairs, getting surgery for a broken hip. Why? Because she would not stop carrying on about some black and blues she had on her arms. She was taking blood thinners at the time and thought they were at the root of the problem (gee, ya think?) Plus, dad was getting All the Attention and she couldn't have that, so off we went. The ER doc said to her, after examining her and finding nothing wrong, "What are you doing here Josephine? I've never heard of someone coming to the ER for black and blues." Sigh. Histrionics run in her family, unfortunately. I just told you that story to hopefully make you chuckle. You need a laugh right now, my friend.

What you're going through is anguish. There's no other word for it, really. Watching your mother decline so quickly and then having the added stress of the tests at the ER, and now the need for hospice....its all too much. My heart goes out to you.

I had a great experience with hospice for my dad when his brain tumor grew, overnight, and nothing could be done for him medically. They eased his pain with morphine and his anxiety with Ativan. He died quickly, thank God, 19 days after hospice was brought in. I was able to lie next to him in bed and tell him all the things I needed to say before he departed this life for the next.

I hope the same for your dear mom, if now is her time to transition. May God grant both of you peace and comfort during this difficult time, and no suffering for your mom.
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JJGood19 avatar
J
JJGood19 Oct 2019
Lealonnie, thank you for your kind words and encouragement.
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We are on mthr's second round of hospice for dementia while she's in the memory care. The first go around was helped by the social worker and aide interaction - they somehow perked her up and had her able to graduate from their care. This time, she's speaking only one word, is immobile, and can't feed herself. She has a 5x week aide to get her up, bathed, and dressed, and she makes sure mthr looks good - a little lipstick before going to breakfast! The nurse is wonderful and calls me when she is visiting. The social worker has called me to tell me euphemistically that my mthr did not feel like taking part in the group activity today, but that she was willing to have the SW sit with her and chat. I think these calls are so sweet. I've had the chaplin call weekly and a volunteer calls every week to ask if there is anything I need or if I just need to talk. I'm so happy that she is surrounded daily by people who are so kind to her and to me.
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JJGood19 Oct 2019
Thank you Surprise for your input, I had heard that one can "graduate" from Hospice, and with Dementia being so up and down and unpredictable, I can see how that would not be unusual.
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"Hospice care" by definition (at least by Medicare) means the patient is not expected to live more than 6 months. My mother has been in memory care for 4-1/2 years. As the Alzheimer's has progressed (very much slower than what you describe with your mother) she has gone to being incontinent, totally wheel chair bound, requires assistance eating (doesn't seem to 'remember' what a fork is or how to properly use it), has become very quiet and spends most of her day sleeping in her chair (except during structured activities like card games/bingo/bible study) and remembers nothing after when I was 5 years old--I'm now almost 69. There are moments of almost clarity but they are very few and far between.
After SEVERAL falls [because WI does not 'allow' rails on the side of the bed or some type of belt to keep them from trying to get up on their own] it was discovered she had a couple fractured vertebra and 'recommended' a minimally invasive procedure where cement was injected to fix the fractures. This was 'supposed' to reduce the pain she had been complaining about. Well, seems the anesthesia pushed her into the next level of Alzheimer's and here 'pain' was much worse. After several weeks of screaming in pain (and no amount of pain meds helped) a PA at the full care nursing facility suggested it wasn't normal pain, it was "nerve pain" (gabapentin was her silver bullet). Even with the gabapentin there are days when she will make sounds as if she is in pain.
It is a very cruel disease and difficult for the person who has to watch their family member continue to decline.
Spending time at a memory care facility on a regular basis is very depressing as well. I have seen people come in and within months they're gone or others (like my mom) linger for years; no apparent rhyme or reason.
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J
JJGood19 Oct 2019
(((hugs))) I know how hard it is to see your Mom suffering. I very much hope to avoid any more of that for my Mom, so I am hopeful hospice will help with all of that, they sound like they will.
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Hello, sorry that your mom has declined. I believe hospice IS only for end of life care. So be careful that you clarify what the Drs agree on, (or you will not be prepared for what happens next).
If you're uncertain as to whether your mother is getting end of life care, don't agree to anything...until you do understand exactly.
God bless.
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Hospice is usually called in when the patient has about 6 months left. They do recertifications for medicare so that care can be continued or the patient can be graduated from the program. My MIL has been on hospice for over a year and a half now. I have found them to be very caring, informative, empathetic and helpful. She has a weekly visit from her nurse, cna 2x a week for showers (I either give her a sponge bath or a shower the other days) a social worker will visit with her on a monthly basis. Right now she is also undergoing PT for balance issues and proper use of her cane. MIL thinks of her extended hospice care team as family. They are there to make sure meds are available, check their general health, supply what items they can to make your mom more comfortable and her life a bit easier. They are not going to look for a "cure" they are there to make sure she is comfortable and not in pain. They are special people who have chosen to make hospice their career. They aren't just there for your mom, they are there for you too. They are an added level of care for her. They are also able to do blood draws, urinalysis, uti testing at the facility instead of having to take mom to the doctor's office and wait forever. If an emergency rises they are on call 24x7 and will send the on call nurse out if needed.
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