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So Mon. 9/26/22 I was up most the night with my 95yr old mom helping her to the RR and we didn't get much sleep. After a year+ with a very swollen white left foot and a now very swollen right foot and falls and hit to her head she woke up Tues. and all the swelling in both feet was gone as if it was never there, I was shocked and have no idea where it went?
Anyway, I got a call from our Hospice social worker telling me they had a bed open if I wanted to take my mom for respite so I agreed, for 5 days.
My mom was eating well, still a little mobile with a walker, able to ride in a car and speak, fuss at me. she came home not able to do any except speak a little and now barely eats.
This would be the 1st time ever. I packed her a bag and had her down there at 6pm Tues., she was so mad at me for taking her and it was just to give me a short break since I am the only caregiver. So I spoke to her by phone Wed. she seemed her cranky self but wasn't eating good like she normally does at home, I decided to go see her on Thurs. cause she was asking for me and when I saw the food they served I now know why she refused to eat it!! They had also put in a Cath due to her asking to go to the RR so much. I could see she had took a bad decline in 48 hrs so I told them I am taking her home, when she knew she was coming home she got agitated and started to scream & yell "I want to go home" broke my heart. Anyway they sedated her and I left, I ordered a hospital bed and had it set up before she arrived on Fri. at 4pm via ambulance. 2 gals and 1 guy got her in the house, they could not get the gurney in her room due to how our hallway is so they pushed her into the living room and attempted to lift her to carry her to her room, it was very clear they were not strong enough to carry her at 100 pounds so my hubby got mad and told them to get the hell out of the way before you drop and kill her, needless to say my hubby picked her up and carried her to her bed and then we had to adjust her. I still had to call lift assist out to fix her in her bed that night.
So now my mom is bones, barely eating or drinking can no longer walk and is very weak. She can still swallow pills and is putting out about 16-20oz of urine in a 24hr period which is really yellow with white stuff in it.
I have cried for 3 days now because I feel I caused this rapid decline and feel so guilty cause had I of not wanted a break she would still be eating, walking, feeding herself, fussing at me etc and I will carry this guilt with me forever. I am so heart broken that I caused this. So now I don't really know how much longer she has, I am hoping her hospice nurse will be able to come out tomorrow and see her.
Today my hubby got her up and we put her night gown on and put her in the transport chair, I made her scramble egg for breakfast and some coffee and she took her am pills. I took her out on the back porch to get some fresh air and sunshine. I want to make sure her last days, weeks, month are pleasant as can be. It's upset me so bad to the point I am not eating and in such a brain fog I don't know what to do but cry.

CareGiver2Mom,

I'm a retired RN and know that any change in location and the loss of the familiar for one so aged can cause a cognitive decline and that may be a contributing factor here. You cannot feel guilty for needing Respite, please remember that adage about needing to put the oxygen mask on yourself before helping others or you'll be no good to anyone. You needed a break, understandably.

The severe ankle swelling - without anything other than your description to work with here - may very well signal heart failure - CHF. Usually, unless there is circulatory obstruction, foot swelling and edema are indicators of the heart losing capacity to pump the veinous blood, resulting in third-spacing of fluids in the peripheral tissues. This swelling will temporarily decrease once the lower extremities and the heart are at the same level, decreasing the pumping demands on the heart. The swelling may have also decreased so markedly because she was given a diuretic drug while in Respite.

Since your mom had an indwelling catheter placed, they can act as a wick to bring all manner of bacteria into the otherwise 'sterile' bladder and cause a UTI - urinary tract infection. The urine being cloudy is possibly indicative of this. UTIs are capable of taking an elderly person down so low and so fast that this may explain every aspect of her changed behaviors that you've described. UTIs can cause cognitive and depression changes, lack of appetite, and a host of other symptoms.

I would contact her primary care MD, or her/his nurse, fully describe her rapid decline and the volume and cloudy appearance of her urine (you could also check it for any foul odor), report all of this and ask for a urinalysis and culture - UA/UC. You can bring a specimen in with a container that you go pick up and drop at the clinic lab. They should have record of mom's drug allergies and given the severe decline, should be willing to order an antibiotic - abx to treat this probable infection. You'll have to push fluids to help flush all of this through her system.

Ultimately, our lives and the lives of everyone we love are given a pre-determined number of days and whether this is a UTI or heart failure or some combination of these and other factors, we cannot change the timing of any passing.

Love your mother and be with her in whatever setting you can manage for as long as she has left of her earthly toil. Sometimes the slightest change may seem to hasten the inevitable, but we are all subject to a greater plan and this is not anything that is due to our actions, it just is.

Wishing you comfort in this distressing time.
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Judycares Sep 30, 2022
You are so wise...and smart! Good messages and advice for all of us. Thanks.
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Your mother is on hospice care thought to have less than 6 months to live. THIS is why she's declined recently, not due to anything 'horrible' you did to her.

Give yourself some grace here and realize that 24/7 caregiving is too much for one person to manage. Respite is recommended for ALL full time caregivers, period. Insisting you 'caused' this natural decline in your mother is not only wrong, it's causing you undue heartache and guilt as a result.

Realize that your mother will pass when God is ready to take her, and nothing you or anyone else does will prevent that from happening as part of the cycle of life.

The best thing you can do is stop crying, start eating again, and allow yourself to enjoy your time with mom now. It can be another year she has on Earth, so don't count her out quite yet, ok? We've seen elders rally ALL the time around here. Your mother is no exception.

Best of luck.
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Reply to lealonnie1
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You should not feel guilty. Look at how much you have done for her. You have siblings who have done NOTHING. THEY should feel guilty for never helping -- THEY could have provided respite for you at the very very least!

How is it that it all became your (and only your) responsibility?
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Please do not blame yourself. You have been doing your best to care for her and you needed a break. Caregivers can get burnt out if they don't have breaks. You're only human! Hopefully with your good care your mother will recover as much as she can. You are doing the right thing. Be proud of yourself that you have been doing so much to care for your mother, and your heart has always been in the right place. All the best to you, your Mom and family.
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CareGiver2Mom, don't feel guilty that you "think" you had set this whole thing in motion. It is no different than one day you are feel great and the next day you are down and out with a summer cold. It just happens. There is no way of preventing it. All of this is new to us, so we believe we are doing the best.

Please note at 100 lbs your Mom is what called "dead weight". At that weight, your Mom's bones could be easily fractured.

Really yellow urine could mean that Mom isn't getting enough water. Don't give her any water with ice as that could upset her stomach. Give her room temperature. For myself, it is so much better to drink :)
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With stage 4 kidney disease and a GFR of 25 anything could go wrong. I was put on dialysis when my GFR reached 26.6. You putting your mother in respite is not a reason for you to feel guilty. I doubt that putting in a cath caused her decline. At stage 4 CKD every day is a gamble.
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I'm sorry your mom is doing poorly and that you are feeling guilty. First, please be kind to yourself. You NEED a break! While people react differently to being away from their usual home, I'm 99.99% sure that what is happening would have happened anyhow. Give yourself permission to have had a needed yet short break.
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Wyoaviator Sep 30, 2022
againx100 is correct.
Correlation is not causation. Just because she deteriorated at the home is no guarantee she would not have deteriorated with you taking care of her.

I know itis difficult, but don't carry that guilt burden. YOU did not cause this. Consider what would have happened if you did not take a break-you may have hurt yourself and been unable to care for her at all. As it is, she is comfortable with you rather than in a hospital down the hall from you.

The logical fallacy is "post hoc, ergo propter hoc." Literally "after this, because of this." If you want to say she deteriorated after you placed her in care, then you can say she deteriorated because the sun rose this morning too.
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Try not to accept false guilt. You made the best decision you could at the time to get some much-needed rest. (I've also considered doing the same thing just to get a break and some sleep.)

Anyway, your mother may rebound being back at home with your attentive care. But even if she does not, you can't take on the responsibility for her decline.
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I am saddened to read this. It is exactly what I have saw over the years with other family members and friends who placed their loved one in a Hospice, Respite, or other facility. There are several layers to what may have happened.

1st, her not wanting to be there could've left her in negative thoughts that she marinated in - hindering desires to do what she would normallly do at home.

2nd, when the staff inserted a cath, if not done properly and changed regularly, it could result in a UTI or if she had an existing UTI upon check-in, it sped-up the infection spread.

3rd, in most Hospice environments, they do not put much effort in to encourage your loved one to eat or drink -- so there could've been days when she ate and/or drank nothing or next-to-nothing -- this only adds to a decline and extreme weakness. That's how a person declines fast in most cases because the body needs fuel/carbs/protein for every organ and cells to operate optimally. The Hospice team is trained to do the very least for a patient but try to keep them "comfortable". If the patient is what they deem as a disturbance or uncooperative, they will sedate as you shared with us.

4th, there could be some bad treatment by a staff member unbeknownst to anyone but her that further made her shut down. I walked in one time on a nurse in a hospital setting being rude to my mother. I pulled the nurse aside and talked with her and the Charge nurse together about what I witnessed, and they both agreed that the bedside manner needed improvement.

I learned that if your loved one is placed anywhere, you have to be in contact with the nurses to monitor fluid and food intake, bathroom use, medicine administered, mood, hygiene needs, therapy, etc.

If they can't answer your questions, then they are not documenting your loved ones needs and monitoring them at a high-level to avoid further medical issues such as weakness and UTI.

I believe my mother has lived so long with her illness (5 years longer than expected) because she is not in a facility and she is cared for well. Unfortunately, most facilities don't believe in transparency, if they did, they would allow you to place a RING monitor in your loved one's room to listen-in and see how your loved one is being treated.

Please get your mother to the ER and have her tested with a full blood and urine test to determine the possible reasons for her weakness. It could be a vitamin deficiency, UTI, etc. If she can drink at this time, I would encourage her to start drinking a high protein/fat/carb shake to boost her up for the ER.

Don't be hard on yourself. You did what you felt you needed to do for your health & wellness. Hoping the best for you and your mother.
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KaleyBug Sep 30, 2022
I believe as you do. My dad will be turning 99 in November because he is still at home.
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God Bless you for getting her out of there in time!!! The neglect and abuse in many of these places is despicable. I was too late to save my sister by the time I found out what they were doing to her.

You are a wonderful person! Do not beat yourself up for not knowing. They have deceived so many. Be grateful that she is with you again and surrounded by people who love her. Praying for all of you! I am so happy she is home. Bless you and your family!
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