Dad died March 6th in a nursing home. Mom was there with him for 2 weeks priior to his death. My sister and I wanted to keep her there but she eloped several times and we were told we had to find a Memory Care unit. After much looking we found one, but yesterday when we visited she seemed better than all the rest of the residents. We wonder if we put her in a place too soon. I don't know all the stages of Alzheimers. I am 18 years younger than mom, but been a caregiver of husband, grandchildren, etc. and have a part time job as well. I don't know how I can keep her at home while I work; however the guilt of leaving her at the Memory Care unit is eating me up. It is too far away to visit but once a week. She has only been there one week.
I get angry with my mom. I get angry for many reasons....the same question over and over, or her asking me how to do something that I know full well she knows how. My mom is an alcoholic as well. My mom has Wernicke-Korsakoff syndrome. It is like Alzheimers or dementia but it was alcohol induced. My mom is a "happy" drunk so we don't have that issue.
The reason my mom doesn't live with me is because I AM NOT DAUGHTER OF THE YEAR and I get frustrated AND angry sometimes.
But the answer always comes back: "there is no budget/space" to create parallel safe facilities for those who are lucid between memory lapses and those who are not. They cannot pay for two parallel teams of nurses.
In Belgium, all care homes advertising spaces for Alzheimers sufferers have to pass rigorous new legal requirements. If they fail, they are not allowed to take in people with any stage of Alzheimer's. Over two years this led to a 50% loss in offer of available residential spaces.
I'm in total agreement with you - I placed my near 93 year old mom in a leading memory care facility and it is a nightmare - I am now paying for a private caregiver 12 hours a day on top of their high facility fees - all levels of Alzheimer's are placed together and the men especially get quite violent - staff are afraid of them and they're supposed to be memory care experts
my mom who can do math in her head and spell backwards doesn't understand why she's with these folks - when I take her out for a treat or to the doctor she wants to know why I turned down the wrong street to go home - she can draw a map of where she lived for nearly 70 years
Clearly she has memory loss and is easily agitated but
Memory care is no real care - they don't help her get ready fo bed and she fell shortly afte getting there from weakness and dehydration from a UTI - often they don't even put a diaper on her
She is not bedridden but one more fall could change that - she needs a safe place but memory care is scary
The best thing to do is to put personal feelings aside and find a nursing or care home where the atmosphere feels friendly and warm, where the staff are kind and patient with the inmates and where a lot of effort is made to keep their spirits up with entertainments, changing decorations to illustrate the seasons, and accompanied visits to sit in a garden on a sunny day. You should not choose just the home that is closest to you. Alzheimer sufferers have absolutely no idea of the passage of time, so afthey won't really notice if you haven't paid the usual weekly visit. If you get the patient to regard the new place as a hotel, it's amazing how quickly they will settle down and become so used to the routine that it will be difficult to take them away "for a treat".
Don't put off the decision to move the patient to a home too long. Patients get stressed when their carers are stressed, and your idea of what makes them happy is not the same as theirs. Patients over the age of 80 will start retreating into themselves anyway. It's the patients in their late 60s and early 70s who will need careful persuasion to move into the "new hotel" and it can be weeks before they stop asking to be driven home and away from their fellow inmates. But give it a few weeks longer, and the "hotel" will have become their home.
Your feelings about this will not matter. For Alzheimer sufferers, the greatest need is security, knowing there is someone on call 24/7 and working out what to do next. If they can't, sleep is often the answer.
Your question is posted on the end of someone else's thread from 2011, so I'm not sure how many responses you'll get, since it may not be viewed that much due to its age, You might generate your own thread so more will view it.
Since your dad may not have envisioned that your mother would have declined as she has, I would not hold on to that promise if your mom's care is at at stake. You have to do what is best for you and her. Plus, you have a special needs child who you are responsible for. I would set the priorities, make the decisions and have peace with it. No one should feel guilty about doing the right thing.
What I might do is have your mom assessed to see what her level of need is. With less than a minute of short term memory, she likely needs assistance with all aspects of care. I placed my cousin in Memory Care and it was absolutely the right decision. She needs all things done for her, such as bathing, dressing, etc. She is double incontinent and in a wheelchair. You say your mom can barely walk. There are a few residents who are able to walk in the Memory Care unit where my cousin is residing, but most are in wheelchairs. An assessment would determine if your mom needs Memory Care or Nursing Home care.
Do you know of a Memory Care nearby? I might consider if your mom qualifies for Medicaid. This is different from Medicare. Medicaid is based on income and assets. If hers are low enough, she may qualify. The details can be found on line, though their rules are complicated and research is highly advised. It would likely cover the cost for her care if she is deemed to need it. I would read about your state's requirements to get Memory Care and Medicaid. A social worker or rep from Memory Care might be able to offer you guidance.
AND do you have Durable Power of Attorney and Healthcare POA for your mom? That would help you as you proceed. She may not be competent to sign that now. I might check with an attorney about that.
It is never wrong to put a loved one in a place that can handle the dementia changes, behaviors, and needs. A place that will keep her safe from the world and herself, and a place that can make sure she is clean, fed, exercised, and has social interaction (vs. passively watching tv all day long at home). Please don't feel guilty.
The guilt we feel after a change like this is often not really guilt from doing something illegal or immoral, but regret and other complicated emotions.
The end of opportunities, the end of or a big change to a lot of family traditions.
Fear of the unknown. Fear of suffering and pain.
Loss of control. As long as people are at their house, wearing their own clothes, we have an illusion of control and normalcy. Going somewhere else pops that bubble. We never had control anyway.
Go out of your way to get mom connected with any pastoral care the facility might offer. It might help mom to talk to somebody if she can. Also make sure her doctors are on the lookout for depression. Grief and sadness are hard enough for a normal brain to deal with, but a dementia brain is operating behind the 8 ball. It's OK to let her have some meds to take the edge off. At this point, we don't worry about anybody becoming an addict.
Give mom time. Lots and lots and lots of time. It will be impossible to discern the emotional changes from dementia vs. grief. Even without this kind of event, it can take some people months to adapt. My friend who is a social worker told me to give my mom not less than 3 months when we moved her into care.
If mom asks about Dad, don't remind her he's gone. Make up something believable that will keep her calm. Forcing her to comprehend and relive the loss is not kind. Reality orientation is no longer done for dementia patients because they are physically unable to retain the information, but can often relive the trauma.
Sending peace and comfort to you & your family. This is a very difficult time for so many reasons.
If I'm incorrect, please verify.....
In our state, most of the Memory Care facilities are assisted living. facilities. They are designed for dementia patients who don't yet need skilled nursing care and who are able to ambulate from the wheelchair to bed with the assistance of one other person.
Most people with dementia who need substantial assistance with daily care, qualify for Memory Care, which is assisted living. If they need nursing care, then they would go to a nursing home. If not, they can remain in the Memory Care Unit for the duration of their life.
Regular Assisted Living here, is for those who have mobility issues and need some assistance with daily care or have dementia that is not severe. And for those who do not wander.
If a patient wanders, then I can't imagine the Assisted Living facility would allow them to remain. The liability is huge at that point. A patient may seem fine one day, but wander away the next. When my loved one wandered, her doctor immediately recommended a Secure Memory Care facility. She needed it and is much better now.
Also, the strong smell of concentrated urine.
Remember to push the fluids (minimum of 2 quarts/half gallon per day) and stay in contact with their doctors.
We knew in just one week that we were over our heads with my MIL's care. She requires 24 hour survellience and support. At times I wonder if we need to consider placing her in memory care. Her SNF says not yet, but on her bad days I think we are asking too much of them in regards to her care. The other patients are depressed by her crying jags.