I don’t know what to do, & no real support

vickitoria

My mom is 82, lives with me annd my husband and has VD, DM2,CKD4. She recently spent a week and 1/2 in the hospital after I found her non responsive for severe UTI w/3 ureter stones. Her blood sugars are wnl. We noticed even before her hospitalization she was sleeping more and saying she wasn’t hungry or that she was hungry and wanting to eat again even though it’s had been a short time since she had eaten a meal. She is able to dress herself, bathe herself and get around but since being home she is stating she is sleepy all the time and I can’t get her to get a bath or eat without sounding liking I’m hounding her to get up and come eat. She has become incontinent of her BM and has a Suprapubic catheter. My husband has been making a point to say she needs to go to a MC or LTC facility for months now but not because she needs it really but more because he doesn’t want her at the house anymore and my siblings have stated “let us know when she is dead so we can get what’s ours”, so I’m doing all of this solo. I am a RN and have worked MC before.
I have read where sleeping a lot and not being hungry is a later stage and I don’t know if it’s time for a facility. She doesn’t wander.
Any advice or help is appreciated

M1

welcome to the forum. Whether to seek help from a facility may depend on a number of things, including the toll that caregiving may be taking on your marriage. Have you thought about a hospice consult?

H1235

mabelgirl

Why are you hesitant for MC? I personally think as the caretaker who also is the PWD’s child, we don’t or won’t see clearly what’s right in front us. Prayers for wisdom and peace.

H1235

Sometimes people actually respond better to someone other than a family member when they need care and help. It is a shame there is such a negative stigma about care facilities. As a mom I would not want my child to run themselves ragged for me and I definitely would not want to be the cause marriage problems. In my opinion it’s time to consider a facility.

terei

Whether or not she is home or in a facility, you should have her evaluated for hospice.

Lucy C

It sounds like your siblings are very unkind indeed, but I wonder if your husband is concerned about the high toll that caretaking is imposing on you, and perhaps doesn't know how to express that concern. If he likes to fix problems rather than talk them over in detail, he may be offering you the only "fix" he can perceive. He may also be experiencing stress and grief which is difficult to explicitly voice, because your attention is taken up with your mother's more immediate needs, and he may be feeling that he has "lost" you. Dementia care affects every person living in a home, not just the primary caregiver.

I agree with the suggestions for a hospice evaluation. It may also help to call the hotline of the Alzheimer's Association and talk the matter over with an experienced listener. Sometimes it's very difficult under heavy stress and isolation to "see the forest for the trees."

❤️

harshedbuzz

@vickitoria

A memory care facility would be appropriate at this point if you can find one willing to deal with the catheter, otherwise a SNF would be needed.

When one person has dementia, the whole household suffers with it. You have turned your martial home into a single-bed SNF. Your husband probably harbors a great deal of resentment against your siblings whose lives have not been upended. He is likely missing the companionship, income, and the freedom to travel that other couples your age enjoy.

HB

mrsabaldwin

whether or not you place her in MC is a personal decision. If it were me, I would let the siblings know that mom is expected to spend all of her funds (I personally do not believe in automatic inheritance. We are not all multi-millionaires) for her care. That said, the “symptoms” you are describing are most definitely signs of later stage dementia. While the care for her health concerns may cause her to even out, she will eventually slide or dip down in a progression of the disease.

My mother’s doctor told me that I have two jobs: keep mom safe and take care of my own mental health. There is no cure or fix for dementia.

As far as your husband, he has a say as to what happens in his household. For me, my husband respects my decision to keep mom home and not place her in care. It has not always been easy, but it was important to me and my mother. I have to work at balance and do take care of my mental health. There are more good days than “bad”. Now with my mom with both ALZ and vascular dementia (VD) she is at a point where she can no longer walk as the vascular dementia causes her to have dizziness similar to vertigo and spatial deficits. She was falling a lot. Every once in a while she does have us get her up to try to walk because where she is mentally she is young, working, going to the fair, etc and she cannot comprehend that she actually cannot walk. While this is sad it is also a blessing as mom would exit seek and end up falling usually in the middle of the night. Also she would be hoarding and leaving poop gifts. So you can see why I say blessing!

Could it be that your stress is an issue in the household? Sometimes our loved ones want to fix things for us and when they feel they cannot, they want to either do something drastic or become frustrated.

Some other advice that my mother’s doctor gave me was to not fret over what my mother eats. If she only wants milkshakes then feed her milkshakes. If she says she’s not hungry then leave some finger foods as snacks and check back later. He told me that my job is to keep her safe. Not stress over what and when she eats. For example one evening my mom said she ate a bunch of fried potatoes with her sisters and was not hungry. So I left her some snacks next to her and told her I would check back later. Later on, I found she had eaten some snacks and she wanted a milkshake. No problem. No stress.

I hope you are able to find answers and peace.