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Don't underestimate the value of professional help.
My mom is in assisted living with dementia. She recently had a bout with Covid and then pneumonia. At her second skilled nursing facility (after the pneumonia) they started speech therapy in addition to physical therapy (walking) and occupational therapy (dressing herself etc.) I asked if the speech therapy was for cognition issues. They said yes. In just a couple of weeks talking to her and getting answers is so much easier. Also her thoughts seem to be better organized. I don't know what method they are following but it works. I plan to ask when I can.
Also check out these SAIDO learning videos. Watch both videos and listen to the testimony.
In terms of assisted living you want to settle him in sooner rather than later. Don't wait until your health is destroyed. It is hard work to get someone moved and get them all the supplies they need along with filling out the associated paperwork. It is also a fair amount of work to find the right facility. I found that many were better than I expected and some were very sterotypically bad. In my research I tended to like the faith based non-profits over the for profit ones. They seemed better run.
Also the more with it he is when he moved the better he can communicate and form relationships with the staff. This will help him get good care as he declines.
My mom's old facility never offered speech therapy or any dementia therapy. We are switching her to the assisted living in the same facility as the skilled nursing that offers it and they are going to continue it when she moves back to assisted living.
I had a chat with the head nurse at my mom's former facility and she said when her grandmother got older they figured they could handle it at home because the whole family was nurses. She said it just about killed them and they ended up putting her in an assisted living facility which was better for everyone.
The former facility was not a good one. I didn't like it when we visited due to the staff being "hard" and the executive director being disorganized, new to the job and clearly intimidated by the staff. It was clean and posh looking. It was the closest one to my brother and he favored it because it was easiest to get to (they live in the same city whereas I am across the country). My mom favored it because it was her old neighborhood and she thought people would visit (they didn't) and she could attend her old church (she wasn't able to due to no one from the church being willing to help get her to services). It was a HUGE mistake. The hard staff were uncaring and did the bare minimum. The executive director was a poor communicator and just ignored communications she didn't want to deal with. Don't go for the most convenient one. Look around at the ones that are the best run.
Thank you for the videos. I will watch them both.
I will know so much more as to what to expect after the actual gerontologist visit. At this point I think he would be very resistant to an ALF. However once we move to our home that is across the street from an ALF it’s possible that he will see the residents outside enjoying the sun and each other’s company but I’m not counting on it. I definitely will be looking at more than one facility. My youngest daughter and I looked at ALFs when my first mother in law got dementia five years ago. Even though her son (my late husband) had been dead for many years we remained close and I was very involved with her care and in the process of finding the right fir for her. That facility was wonderful but the third generation owner sold it a few years after my dear mil passed so I would have to see if their standards are as high as they once were.
It would be wonderful if he had access to speech therapy because his communication skills are rapidly slipping. I’m sure that a facility that spends time rehabilitating the residents would help tremendously with his quality of life.
Thank you so much for reading and this and your comments!
There is one that I know fits the bill and Mom even said she would be willing to give it a try as it runs by nuns... VERY important to her...
In my case it is 150 miles away and I would have no idea how that would work even pre-Covid.
There is sure nothing about this that is easy. I can totally see that a facility 150 miles away would be a logistics issue and the effects of COVID on visiting could be a nightmare.
I hope you’ll let us all know what you both decide on. Best luck to you both on the search.
There is sure nothing about this that is easy. I can totally see that a facility 150 miles away would be a logistics issue and the effects of COVID on visiting could be a nightmare.
I hope you’ll let us all know what you both decide on. Best luck to you both on the search.
Right now in a holding pattern...
Biggest step was to elder proof the house...
Second was moving back to my childhood bedroom...
Third is having some help which Mom was very resistant too but now very pleased...
Mom is a walker... at 87 can still walk several miles a day up and down the hills... it also helps her to sleep better which helps me. She did her last marathon at age 75 and her Doctor suggested walking would be easier on the knees... otherwise totally healthy expect for memory...
Siblings want everything liquidated if Mom moves but this would also be time consuming... selling the home would free up money for care.
It would break her heart to know that her limited treasures is just stuff to get rid of...
Off topic... my Grandfather's aunt with no children could no longer live on her own... she was born 1900.
She didn't have much but it was all she had...
I helped her move and took a great burden from her... she had a furnished one bedroom apartment and I offered to store anything she wanted to keep but could not take to assisted living.
She enjoyed assisted living and quickly made friends... only needed a few things from storage.
As time went on I let her know of a family with very little that could use a dining set... she gave it to them and they sent a nice thank you card... it was the same for other things over the years...
I think the difference is she was still in charge and it meant something to her being able to help others... instead of what are we going to do with all this junk???
I can see you husbands car collection and shop tools being very important to him...
I will know so much more as to what to expect after the actual gerontologist visit.
One of the best things we did was get a Neuropsychological evaluation. Neuropsychological evaluation is an assessment of how one’s brain functions, which indirectly yields information about the structural and functional integrity of your brain.
Tests evaluate functioning in a number of areas including: intelligence, executive functions (such as planning, abstraction, conceptualization), attention, memory, language, perception, sensorimotor functions, motivation, mood state and emotion, quality of life, and personality styles.
The tests also reveal areas of daily functioning (e.g., financial management) with which the patient may need assistance indicate rehabilitation potential. For example, will the individual benefit from certain cognitive or behavioral treatments, occupational therapy, or pharmacotherapy?
They told us what parts of my mom's brain were working well. Her memory was excellent. However her executive decision making was very poor. They said it was basically unfair for us to expect her to be able to make a decision and take action on it. This was really helpful to think about because it meant we could adjust our expectations of her behaviors without judgement. They gave us a complete readout on the various ways her brain was and wasn't functioning.
Your doctor can order it. It takes a couple of hours and then they give you the results. Take notes and ask questions during the readout. They will also give you a written read out.
If you do put him in assisted living the very best thing to get is an echo dot. You can have them in multiple rooms in your house and he can have one in his room. Then you can "drop in" on his dot at any time without him having to answer the phone.
When you "drop in" the dot in his room will chime and then you can say hi to him. You can leave the connection open for as long as you like. You can eat together that way, "drop in" to wish him good night, or just to say good morning.
Friends and family can also "drop in" on him if you set it up to only allow drop ins to his dot. If you allow them on all dots drop ins from outside the house will connect to the dot where someone starts taking first and you probably don't want people dropping in on your house dots. They can call you on the cell phone since they don't have dementia. You can use your phone contact list to authorize people to drop in.
He can also use it to call your phone and others that you set up. All he has to be trained to do is say "Alexa call Holly-Kay (insert name of contact you want him to be able to call)". Much easier for people with dementia that using a cell phone or a traditional phone.
The microphones on the echo dot are amazing. I can hear my mom anywhere in her apt and talk to her and check on her even if she is no where near the phone.
Third is having some help which Mom was very resistant too but now very pleased...
Mom is a walker... at 87 can still walk several miles a day up and down the hills... it also helps her to sleep better which helps me. She did her last marathon at age 75 and her Doctor suggested walking would be easier on the knees... otherwise totally healthy expect for memory...
Siblings want everything liquidated if Mom moves but this would also be time consuming... selling the home would free up money for care.
It would break her heart to know that her limited treasures is just stuff to get rid of...
Off topic... my Grandfather's aunt with no children could no longer live on her own... she was born 1900.
She didn't have much but it was all she had...
I helped her move and took a great burden from her... she had a furnished one bedroom apartment and I offered to store anything she wanted to keep but could not take to assisted living.
She enjoyed assisted living and quickly made friends... only needed a few things from storage.
As time went on I let her know of a family with very little that could use a dining set... she gave it to them and they sent a nice thank you card... it was the same for other things over the years...
I think the difference is she was still in charge and it meant something to her being able to help others... instead of what are we going to do with all this junk???
I can see you husbands car collection and shop tools being very important to him...
What a wonderful idea to store some of the items and then eventually give them to people in need.
You are so right about his tools and other shop equipment. We have a young fellow car enthusiast who I’m sure will be a recipient of many of his shop tools. I know that his tools aren’t junk to be gotten rid of but what a huge lasting gift his tools would be to this young man. I would honestly rather see him take all he can use than to sell. I think it would make hubby happy to know that he was helping this young man.
I think it would make sense for him to sell his cars because he can no longer drive them and we don’t have room for onsite storage however it kills me to think of him giving up his collection. I was googling storage buildings last evening so we could keep them in storage but I would think if the building isn’t climate controlled they could deteriorate especially as he wouldn’t be attending to them as he did before his decline. I’ve considered keeping this home and leasing it so he can keep all his vehicles here as we would lease the home only not the garages. That would be risky though because who knows what damage could be caused by tenants who wanted to snoop and found a way to do just that. It’s so disheartening to know that his input can’t even be counted on as being logical so I can’t ask for his guidance. I always thought we would live here until we got too old to care for it or until one of us was carried out feet first. I never imagined that dementia would put the kabosh to our ordinary lives and not old age.
I know that we have to leave here as the stress of worrying about everything that isn’t getting done maintenance wise, full time caregiving, and little sleep is wearing me down. I don’t want to be hard hearted in downsizing but eventually we all have to do it.
If you do put him in assisted living the very best thing to get is an echo dot. You can have them in multiple rooms in your house and he can have one in his room. Then you can "drop in" on his dot at any time without him having to answer the phone.
When you "drop in" the dot in his room will chime and then you can say hi to him. You can leave the connection open for as long as you like. You can eat together that way, "drop in" to wish him good night, or just to say good morning.
Friends and family can also "drop in" on him if you set it up to only allow drop ins to his dot. If you allow them on all dots drop ins from outside the house will connect to the dot where someone starts taking first and you probably don't want people dropping in on your house dots. They can call you on the cell phone since they don't have dementia. You can use your phone contact list to authorize people to drop in.
He can also use it to call your phone and others that you set up. All he has to be trained to do is say "Alexa call Holly-Kay (insert name of contact you want him to be able to call)". Much easier for people with dementia that using a cell phone or a traditional phone.
The microphones on the echo dot are amazing. I can hear my mom anywhere in her apt and talk to her and check on her even if she is no where near the phone.
We have echos and the smaller dots throughout our home so he is very familiar with Alexa.
I am still hoping to keep him at home for as long as possible it just can’t be this home as it’s just overwhelming maintenance wise but if/when he goes to assisted living living I’ll make sure he has an echo or dot in his room. He probably won’t use it to make calls though as he has trouble remembering who he wants to call and then completing the thought to turn it into a command.
We have echos and the smaller dots throughout our home so he is very familiar with Alexa.
I am still hoping to keep him at home for as long as possible it just can’t be this home as it’s just overwhelming maintenance wise but if/when he goes to assisted living living I’ll make sure he has an echo or dot in his room. He probably won’t use it to make calls though as he has trouble remembering who he wants to call and then completing the thought to turn it into a command.
My mom also doesn't make calls. But it does make me feel better that she could contact me if there was a real emergency. I have had her call me on the dot by tell her to test it and that works. But she doesn't initiate them.
Every now and then she says she wants to talk to someone and my uncle has seen her holding the phone but she can't turn that into a phone call. At her first assisted living we dropped the cell phone because she couldn't work it. Turns out she couldn't work the land line either so at this assisted living we are not planning to activate the land line.
Sometimes she seems to think I am in the room with her talking until I tell her I am on the dot. She does understand it then.
One of the best things we did was get a Neuropsychological evaluation. Neuropsychological evaluation is an assessment of how one’s brain functions, which indirectly yields information about the structural and functional integrity of your brain.
Tests evaluate functioning in a number of areas including: intelligence, executive functions (such as planning, abstraction, conceptualization), attention, memory, language, perception, sensorimotor functions, motivation, mood state and emotion, quality of life, and personality styles.
The tests also reveal areas of daily functioning (e.g., financial management) with which the patient may need assistance indicate rehabilitation potential. For example, will the individual benefit from certain cognitive or behavioral treatments, occupational therapy, or pharmacotherapy?
They told us what parts of my mom's brain were working well. Her memory was excellent. However her executive decision making was very poor. They said it was basically unfair for us to expect her to be able to make a decision and take action on it. This was really helpful to think about because it meant we could adjust our expectations of her behaviors without judgement. They gave us a complete readout on the various ways her brain was and wasn't functioning.
Your doctor can order it. It takes a couple of hours and then they give you the results. Take notes and ask questions during the readout. They will also give you a written read out.
Thank you for the link. It looks to be very in depth testing. I will ask his gerontologist about something similar in our area and if it would be beneficial.
His evaluation this week lasted about an hour and it absolutely wiped him out. He was so agitated and I think that really affected how he scored. It was shocking to see how poorly he did. I knew he was slipping rather quickly but in our day to day life it doesn’t jump out and slap you in the face like it does when confronted with loads of evidence of the decline during evaluation. I felt like an anxious parent willing him to do well in my mind as he was struggling.
Last year this time he was having some memory issues but he was totally able to drive, order food at a restaurant and pay for it without my help. He could carry on a phone conversation and easily made phone calls without help. I could go to the salon, or shopping with my daughter and not worry that he was doing something dangerous at home. Now I don’t leave home unless he is with me.
You are at the stage where you are still wondering what is going on and how to deal with it. The Neuropsych will help alot with that. It compares his performance to a normal performance for his age. From what you describe you will be shocked at how bad he is. As time goes on you will start remembering that you were seeing signs of this years ago. Even decades ago. People can hide it very well.
A brain scan is also really helpful. You can see the physical damage in the brain. My mom has white matter disease everywhere. This physical evidence is also really helpful in understanding what is going on.
However I can tell you when you get your house sold, the physical possessions sorted and your husband placed in a good facility you will feel immense relief.
Accepting your new reality is a really important step. I noticed in your first post you were really desperately wanting out. Then in a recent one you wanted to keep him home with you as long as possible.
In my opinion, as someone who has gone through this and learned from the way our different family members have contributed or not (engaged in self preservation) I cannot say that the way of self preservation is wrong. I think it is the better response to this. The self sacrificing, drive yourself into the ground with stress and worry is the more nobel/socially acceptable response but I believe it is the wrong response. It is an emotional but not intellectual response.
My advice is this is hard enough without making a martyr of yourself. Get the neuropsych to tell you what level he is functioning at in various areas. Get the brain scan to get the physical diagnosis. Sell the house. Place the possessions. Find a good facility.
I cannot stress enough how hard it is to find a good facility and get someone placed there. Lots of forms. Lots of things to buy. Setting up and going to medical appts. Handling all the business affairs etc is enough to wear down anyone. Don't make it harder on yourself by wasting time on things that won't work like keeping him at home for as long as possible. If the head nurse at my mom's assisted living facility couldn't do it, with a family full of nurses to help, you can't do it either.
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Edit: I wanted to add that I didn't get to this frame of mind on my own. I also had the emotional response. After my mom's stroke I was lost as to what to do. I was trying to get her apt sorted so she could live there with the help of an in home aid. My husband said that based on what I was telling him I was spending my time wrongly. I should be finding a facility. Then when it was apparent that just a daytime in home aid would probably not work I though maybe she should come live with us. He again said I should look for a facility as there was no way we could handle her needs. He was right. But he also chipped in and spent an entire week on the phone researching facilities.
I also had help on the medical side. Her brother is a retired Dr. He is the one that insisted on the brain scan and asked for the neuropsych exam. I would never have known what to ask for from the Drs. The results helped us both with decision making about her care.
Then watching my brother and his wife (who had elderly relatives go through this before) pull back and put limits on what they were willing to do made me aware of the concept of self preservation. I couldn't say what they were doing was wrong. So I have incorporated that thought into my involvement in managing my mom's care.
Last edited by mic111; 02-07-2021 at 09:25 PM..
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