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.
We think she has some head trauma from all the falls and blows her head has taken from them because she has a few small lumps on the back of her head, complains of her head hurting and squinches her eyes alot now. I have been giving her meds for pain and to keep her comfortable all week since she came back home.
The last few mornings she has been very talkative and waking us up saying she needs to get up and get dressed and wants to go out to eat, at night seems to be the worst for her and us as we thought she was going to leave us. She is so boney and we hate feeling like we are starving her due to her inability to really eat/drink, its terrible to see this decline. Her eyes are all sunk in and super red around them, her speech has gotten worse but her urine output has been about 12oz in a 24hr period but is very dark. I am taking this so hard and know I am going to need some therapy to get over this, its heartbreaking to watch. I just pray for her to be free of pain during this process and that she crosses over soon. Thank you all so much.
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!
I came to realization, I am not perfect, and definitely not perfect caregiver and I never will be, but I cannot do it alone, I need help, respite.
Some therapy and detachment was needed as I came to realize how I cannot blame myself and I have no power nor control led me to read a lot about guilt, some notes I kept and even if they don’t apply to your situation perhaps one or two points you will find helpful:
As a caregiver, it might seem like there’s everything you feel guilty about.
You might feel guilty over:
Feeling resentful, trapped,
Feeling that you’re not as good of a caregiver as you should be or that others are doing a better job
Not visiting enough
Wishing it was over
Wanting time for yourself, asking for help, hiring an in-home caregiver, or using respite care so you can have a much-needed break
Common misconceptions about how caregivers should feel or what they should do and the guilt that comes from not living up to those unreasonable standards can really hurt you.
These beliefs can push you to take on unrealistic responsibilities, avoid getting the help you need and deserve, and be too hard on yourself.
1. Acknowledge that you feel guilty
The first step in solving a problem is to admit that it exists. When you suppress a feeling, it only becomes more intense.
Identify when you’re feeling guilty and acknowledge the thoughts and emotions. That can help reduce the feeling and let it pass.
For example, say “I feel guilty because I snapped at mom this morning over something trivial because I’m exhausted.”
2. Check your expectations against reality
Having unrealistic expectations causes unnecessary guilt.
When you think “I should be able to take care of everything without feeling resentful or exhausted,” check that against reality.
Would you really expect that all other caregivers should be able to do that and keep it up forever? No, of course not. It’s unrealistic and not something you should expect of yourself.
Or, if you think “I should never move my older adult to assisted living or nursing care, no matter what,” think about the reality of the situation.
There are so many situations where keeping someone at home is unrealistic and could cause serious harm to the older adult or the caregiver.
If a friend had told you about a situation like that, you would agree that a move is the best solution for everyone’s health and safety.
3. Don’t compare your worst moments with someone else’s.
Based on what you might see or hear about other caregivers, it could seem like they’re doing a better job.
You might think they’re better at coping with stress, hands-on care, working with family, or finding resources.
Your words, "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."
You are confusing your grief with guilt about her demise.................she is on her own path; you need to accept that the decline is here and has nothing to do with you. As for when her death will occur, that is not up to you unless you have been given the task of pulling the plug.
When my mother was dying, I had to finally accept that her body and mind were ready to go and that I would NEVER be ready to lose her: I just had to let go and let God. I would never wish for a long life on anyone who was suffering, they need to go when their bodies start shutting down.
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.
my whole life , but the guilt of taking care of a parent and making decisions with their care is one of the most difficult to do. I finally said I can’t do this anymore and I am taking each day and trying not to be hard on myself with what decisions I make .. God has a plan and old age is also a factor even if you were a doctor you still should say “I have done the best I could” and leave it at that . Repeat that to yourself it does wonders .
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.
Second... Ask for copies of the records... MAR (Medicine Administration Record), Nurses notes and Doctors orders. You may find something in there that her personal doctor could use in moving forward. If medication or dosages were changed, she may improve if it is readjusted. As others have said if she has a UTI or kidney issue, getting it treated may help her improve. Her doctor may see things that still can help her improve to make things easier for both her and you.
Just know you did what you thought best and many of us may have done the same thing... as someone else said, there is no way to know that similar issues would not have happened had she stayed home.
I know... most of the advice you receive in this forum is definitely easier said than done... remind me when I feel the guilt!
I am so sorry for all the trouble you have had both you and your mother. I know you love each other a lot. You and your husband both needed time for yourselves. Lots of love to you and blessings.