Mom is 89 years old entering the last stage of dementia. She still knows who her husband is (most times) and who all her children (8 of us) are. She toilets, showers, brushes her teeth and feeds herself and can have conversations (sometimes non-sensical) and ask questions although repetitive. She can’t prepare her own food put on makeup or pick out her own clothes. She and my dad are still having relations weekly primarily initiated by her (not that my dad minds).
Prior to her mild heart attack last week, her children would take turns taking her out to lunch, on small shopping trips or to get hair or nails done 3-4 times a week. Now she’s very tired so she needs a lot of rests. Not sure if she’s still in recovery or if she’s nearing the end. She lives at home with my 88 year old father who is her main caretaker with 5 of the 8 kids helping as much as possible. She has delusions or hallucinations (don’t know the difference) once in a while like my dad punched her and called her a wh*re, a man came through her window and tried to rape her, or people are trying to break in the house and kill them. As a result of the foregoing, she’s scared and always needs to know where my dad is when she’s home even if one of her kids is w her. It has definitely taken its toll on my dad but God love him, he’s doing everything he can to keep her home. While she’s watching tv, sleeping, he keeps himself busy (piano, Lego’s, puzzles, photo album assembly, plays cards, computer games). He has a baby monitor so if/when she calls out to him, he can go to her. When she’s with one of us, he has lunch with friends, goes to church, and plays tennis (collectively about 3 x’s a week). It has definitely take a toll on him. She gets very tired and irritable when sundowning each evening begging my dad to go to bed with her. In the winter when it gets dark early this is really hard for my dad.
My mom resists in home care. We have a caretaker come in 4 hours 2
days a week to clean, go food shopping and do the laundry. She comes two mornings a week so my mom has limited exposure to her. Otherwise she ostracizes my father as to why do we need her,
we can do it.
So as you can see, more home care may be problematic and cause more stress on my dad. But we’re struggling to put her in memory care as she still knows who we are, absolutely loves her home (it’s her safe haven) and is still very lucid at times. It amazes us how she can’t remember what she had for lunch, but she picks up on funny innuendos. She even cracks sensible jokes herself. It is breaking our hearts literally thinking of taking her out of her comfortable home environment and placing her in a memory care facility without my dad or any of us. I don’t want her to be scared and confused or feel like we abandoned her. They say, if we’re triggers we probably shouldn’t see her for the first week or so. All we do is sob because we know they need more care but don’t have a viable solution. We’re concerned for my dad’s health but also concerned that my mom will regress significantly and live her last days brokenhearted and sad if she’s in a memory care facility.
Any advice or help you can give is greatly appreciated.
Your Dad, assuming he’s okay to do so, really drives this process. He deserves quality of life too. So it comes down to what he can live with, his physical and emotional health, financial resources, and what he’s willing to sacrifice to keep her at home. Let him know that facility care is not a failure on his part. Is he willing to place her in a memory care unit close by where he could visit, enjoy meals in the dining hall and keep her company? Hire more consistent caregiver help in order to keep her home? Would he consider going with her to a transitional living community with her and, when the time comes for her to be placed in memory care he would be living in the same community?
Keep a detailed list of mom's behavioral issues and present them to her neurologist (I faxed a list in advance of Dad's appointments); ask if medication management is appropriate. It was for my Dad and significantly increased his quality of life – and ours. My dad was prescribed Nuplazid for delusional behavior and hallucinations (he had Dementia with Parkinson's). We also had an emergency supply of low-dose Xanax for urgent use; I dissolved it in sparkling cider and we enjoyed ‘happy hour’ together.
Sundowners is real – and hard to deal with. Turn the lights on before the sun sets and keep them on until bedtime. Engage her in activities during this time, a puzzle, lighthearted TV program, or ask her to help fold laundry. Agitation, delusional behavior, and hallucinations are common for dementia patients. Agitation may result in angry outbursts and may become physical. Hallucinations include seeing, hearing, tasting, or smelling that aren’t there (my Dad was certain he saw people walking around inside his home, for instance). Delusional behavior centers around irrational beliefs/behaviors (my Dad stood firmly on the belief that he’d had a huge fight with his cousin. Lots of details and anger every time he told the story. His story was consistent over several years. In reality, it never happened). Agitation can be triggered by her inability to find/use the correct word, frustration, or TV programs that contained violence, etc. The medication helped - and did NOT 'dope' him.
My father couldn’t tell you what he did 5 minutes ago, but he never forgot his family, friends from childhood, or his career. He did lose memories from 20-25 of his most recent years (retirement). Everyone is different.
Hospice Care isn’t just for the final weeks of life. Talk to her physician and ask for advice. I was my Dad’s healthcare advocate and full-time caregiver, attending all medical appointments. His doctor didn’t suggest Hospice care to families because they often panic thinking death is imminent. But when I approached him he agreed it was time and Dad had in-home Hospice Care for 1 ½ years. Contact Hospice in your area for a free consultation. If she’s a candidate, Hospice will contact her doctor for approval. Medicare picked up the tab for medical equipment (walker, wheelchair, bed, oxygen, etc. And provided a daily aide to help dress/bathe him, A social worker (who can help you find the right resources/programs), and weekly nurse visits.
If you do choose to place her in a facility, surround her with family photos (label with name/relationship such as Tim, grandson), and I created a “Life of Dad” framed poster, noting where he was from, his hobbies, his career, etc. It reminded him and served as a conversation starter with the staff who got to know him well. I used command strips to post on the wall as per facility requirements.
Every individual's path is different. Just do the best that you can.
Placing a loved one in Memory Care doesn't require that she is SO 'out of it' that she doesn't know who you are! Quite the contrary; it means that she's reached a level of care that cannot be handled at home; requires too many caregivers to achieve, too many sleepless nights for the family, too much agitation and behavioral issues that the family can't cope with, things of that nature. Because remember, you can all go visit mom at the Memory Care every single day if you'd like. It's not like once she's there she's locked away, never to be seen again! You've not abandoned her; you've placed her where she can get 24/7 care from a whole team of people working round the clock to provide what you are trying to do single handedly at home.
My mother is 95 with advanced dementia & living in a Memory Care ALF for nearly 3 years now, the regular AL before that for 4 years. There is a doctor on call and who comes to see her at least once a week, the hospice team who sees her 3x a week, her meds are delivered to the MC and when a med change is made, the new one is delivered same day or early the next morning; lab techs are sent out to the facility for blood work, xrays, even an echo cardiogram was done in house for her. Don't minimize the fact that she'll be in a medical community specifically designed to care for her needs, on the spot. That's what people tend to forget when emotionally involved with the decision making process and using words like 'abandonment' and such. This is for mom's best care and management, not as an attempt to get rid of her!
Home care works for many families when everyone is on board and in agreement to help with the care load. When reliable and good carers can be hired to come in to help, especially overnight and to give respite to tired family members. There's no 'one size fits all' scenario for dementia care, so figure out what works best for YOUR family and go from there.
For what it's worth, I firmly believe my mother would not be alive today if not FOR the Memory Care she's in and the level of care provided. They catch her illness immediately and see to it; call the doctor and address it, medicate her accordingly, etc. She's been sent to the hospital ER immediately for chest pain and another issue they felt strongly about. She did not 'regress' when she transferred from AL to MC, quite the contrary, she thrived.
Whatever you decide to do, there is no 'wrong' answer and you shouldn't let 'guilt' drive you in the process. Dementia is the bad guy here, not you or any decision you make in terms of helping your mom.
Wishing you the best of luck moving forward.
In the "good ol days" people would die of chronic conditions by their 70s, whereas now it's expected Medicare will keep them alive through all that. They get dementia. They start shadowing people. They literally can't recognize the toilet anymore. They may use the rug as a toilet. They're almost always in denial of their condition.
On the one hand, it sounds like he's getting some decent respite time, but on the other hand, I'm convinced that caring for my mother at home and the lack of sleep is what led to my father's early demise. (He died before she did.)
Your mom doesn't have to be in terrible shape to go to memory care, and I wouldn't say she's in anything approaching final stages of dementia. Still, she'd probably do fine in MC, and I'd turn my focus to Dad and what would be best for him at this point.
If the homecare aides are nice to her, she will adapt with time. When the caregivers come to the house, your father has to leave. This is the only way your mother will get used to being with her caregivers alone. If she doesn't outright recognize them, they will in time become familar to her at least. It takes time though.
I've taken care of many people with dementia who would get upset if their spouse was gone for a second.
Then I'd tell them to go and not to return until my hours were up. Some folks would be shocked and would tell me that the client will get upset and freak out if they leave. I'd still make them go. It was always hard the first few weeks, but the client has to get used to being alone with the caregivers and they do. Set up cameras in the house if it eases your mind, but your father has to let your mother get used to being alone with caregivers.
Sundowning can be lessened by installing very bright lights (daylight spectrum) and turning them on before the natural light begins to fade, and then leaving them on until she goes to bed. If she is in the room watching tv programs that are negative or distressing, I would make sure not to do this since people with dementia tend to internalize it as real and can't process it like a "normal" person anymore. Also, can your dad get her started on a distraction during that time of day? We have my elderly aunt with mod/adv dementia fold a large stack of kitchen towels, or chop vegetables or sort and pair a large basket of socks (that were purchased for only this purpose). Because of her short-term memory decline we ask her to "please help us" with folding at least 2x per day. This not only keeps her busy but also burns mental and physical energy, so she might sleep more soundly as well. Then we put in a Disney or Pixar animated movie that is light-hearted and happy. She can't watch the news or any other type of tv program...even ones that you or would think are innocuous. She has the same delusions as your mom about rape and robbery, etc.
My friend's wife has early onset ALZ and she was in the Shadowing stage for a long time and she resisted outside help but when he could no longer take it he hired a nurse/companion and just had to tolerate his wife's suspicions and protests and she came to accept and enjoy the company. It takes more time for people with dementia to adjust to change.
I would also be concerned for your dad if your mom did go into MC...he may lose his sense of purpose and become depressed...but maybe not. Are there other interim options, like adult day care and then an evening nurse? As her primary caregiver, what does he want? (I love that he still plays tennis!)
Like others have said here, I'm not above a little threat. She should be told that the aides are there to help dad help her stay at home. It is that or it is a facility.
The mother has to get in the habit of being alone with caregivers and she will. It will be hard for a while, but if her caregivers are kind to her, she'll get used to them.
Assisted living is like senior apartment living. They get their own room, bathroom. It's like a little studio room. They can have visitors and they can leave whenever (with someone checking them out) and they have a ton of activities plus a dining area to make sure they're eating. So they still get their own privacy but someone is there if they need help.
I do not have family. I am the only child and my dad recently passed, so it's taken too much of a toll on me to be her caregiver anymore. It's great you have a big family to take turns, but it is extremely mentally draining at the end of the day regardless. The guilt is hard to get past on moving them from their comfort, but if it's the best thing for everyone, sometimes it's just what you have to do.
Hoping you can find some solutions. I know it's very hard to be stuck and feel like you don't really have answers or don't know what to do