Connect
Weekend caring for my mother: Parkinson’s and Sundowners or UTI?
I recently spent the weekend with my mother to give my father a weekend of respite. My mother has been diagnosed with Parkinsonism or Lewy Body depending on who you ask. She is 83 and was just diagnosed a few months ago. The progression has been fairly quick. She cannot walk, dress, use the bathroom on her own. She is wheelchair and chair bound. My father, 84, is her caregiver. She wakes multiple times a night to urinate. She uses a commode. Although she does urinate some, it is not an emergency but does have incontinence at times. This weekend she was extremely confused and “out of it” during 2 of her 5 wakes during the night. Wanting to use the wheelchair to go into the bathroom versus the commode and insisting on removing her nightgown. She was not agitated or aggressive, just very confused. I was able to convince her to use the commode and pt her nightgown back on. Is this Sundowners? Or just another symptom of Parkinson’s/Lewy Body?
Like
Helpful
HugInterested in more discussions like this? Go to the Parkinson's Disease Support Group.
Connect
Your mother's symptoms are very similar to my husband's. From all that I have read, Sundowners or dementia goes along with Parkinson's Disease. He gets very confused at times and says things that do not make any sense. He has trouble explaining to me and his caregivers what he needs or wants. My husband is probably in stage 4 or 5 of Parkinson's and is now under Hospice care. He has been in and out of the hospital and rehab for the past two years. We are having 24/7 care for him at home because this is where he wants to be. He does have trouble sleeping, the same as your mother. He can no longer stand or walk on his own and we recently received a hoist to move him around. He stays in his lift chair all of the time. He has a hospital bed but refuses to sleep in it. Just recently, he has been choked on fluids. I recommend full Hospice care if you do not already have this. This was a very hard decision for me to make but the care my husband is receiving is so much better. Caregiving for a loved one is very difficult and can wear you down quickly-not only physically but emotionally. My husband was an Air Force pilot then a top salesman for a chemical company. He was a very intelligent man and to see him the way he is now breaks my heart. I'm sure you and your father are having some of these same feelings. God bless you in this most difficult journey!
-
Like -
Helpful -
Hug
10 Reactions@vette98 how was the determination made for hospice? Was your husband seen regularly by a doctor?
-
Like -
Helpful -
Hug
1 ReactionMy husband has been under Hospice Palliative care. He had been hospitalized in 2024 and when he was released, the doctor recommended Hospice care. He was hospitalized in February of this year then went to rehab for about a month. When he was released he was sent home with a home health care service. The nurses that came to our home saw that his condition was getting worse and recommended full Hospice care. Since my husband was already in the Hospice Palliative care program, it was fairly easy to move him to the full Hospice care. We are fortunate to have two good Hospice groups in our area. I highly recommend the Hospice program for people with a disease that is terminal. The nurses and social workers are very helpful and are there to help families through this journey.
-
Like -
Helpful -
Hug
6 ReactionsMy mother is 69 and has Parkinson’s Disease and I had to move her in with me. She is bed ridden. I have to feed her breakfast, lunch and dinner. Plus work my 9 to 5, I have a husband and a son. I am so tired and do not know what to do. She was on Hospice but because she wasn’t dying the discharged her.
It sounds like a lot of you all are dealing with the same issue.
-
Like -
Helpful -
Hug
4 Reactions@cretialyn That sounds like a tough situation you are in. Is it possible to hire someone to come during the day while you take care of your family and career. A 7am to 7pm aide would do nicely. Talk with your husband to see if you can afford it. This person you could hire would care for your mom like in a hospital setting. Think about it!
-
Like -
Helpful -
Hug
2 Reactions@cretialyn wow. You are dealing with more than I am. My father can mostly care for my mother. But he gets tired! And then wants me to stay with her overnight so he can get a break. I am 2 1/2 hours away. My sister and her husband cook for them almost every day and my father seems to think they are at his beck and call. As am I when he feels he needs a break. I worry about them all the time.
-
Like -
Helpful -
Hug
4 Reactions@dedhambeth my mother did have a UTI. She is in antibiotics.
-
Like -
Helpful -
Hug
1 ReactionHello @cretialyn and welcome to Mayo Clinic Connect. You certainly have a lot on your plate right now. As @becsbuddy suggested, you undoubtedly do need some extra hands to help you care for your mother.
How long ago was she discharged from hospice? You might consider having her reevaluated to see if she might qualify for hospice now. If not, it would be good to find some help.
Is your husband able to assist you with your mom's care? Are there any other family members who can help?
-
Like -
Helpful -
Hug
2 Reactions