I had to take control of the meds, money and food prep.. Fortunately she still loves to read, but it prevents her from doing very much physical activity. To encourage 'movement', I often ask for her help doing as much as possible. She is highly prone to falling, but the walls and surroundings are her support. Our tri-level home has railings on all stairs and including the shower. She is like a 'puppy', always in the same room as I am, keeping track of me. Maybe this is a lack of security. I don't know where this is going and I feel that this is not something new, only to me. Answering the same question 10 minutes apart, asking if we have mail after she had gotten and handed it to me for us to over 15 minutes earlier is part of the disease, but at times unnerving. I worry that there will be a time when we will have to sell the home. When should I/we look for a memory care facility? No family near us. Family is in Tenn. Being in Va. Beach (retired USN) we have excellent medical facilities. I seem to be in reasonable health so far, despite having a heart attack in 2007. Any thoughts?
We started looking at care giving options and facilities twenty years ago after my husband broke his hip and spent time in rehab even though we did not need it at that time. The more you visit and observe, the better your questions become and the more you can zero in on what is important to you to make a good choice to possibly minimize having to keep making changes, even though a certain amount of changes almost always happens. At your age, it may help to consider if it is a place you may want to move in later to be with her if needed. When my husband with Parkinson's broke his hip at age 54, our world changed overnight with decisions I never thought I would have to make for a long time! He has Parkinson's with related dementia now involving Lewy Bodies. He is 78 and I still don't have a first choice... but I do have a list of places to try our best to avoid.
Also, look for a nearby support group for others in similar situations. Personally, unless there is a reason not to... I would lean toward moving closer to family to have that extra support as the situation progresses. Of course, sometimes a friend network may be a better choice.
It's like they say during the safety message as the airplane is taking off, "Put your oxygen mask on before you help the person in the seat next to you."
It's important that, as the primary caregiver, you ensure your needs are taken care of, too. That may look like a professional caregiver for a few hours per day, enrollment in Adult Daycare, or dropping mom off at the children's for a few hours every Sunday.
The other thing? You have to live in the present. Wishing she were like she was when she was 50, or comparing her to even a year ago, are counterproductive and will lead to burnout and depression. She was once the woman who took care of the house; now she is the woman who asks about the mail every 15 minutes. Love that woman, and I promise, you will be happier, saner and have the wisdom to make hard decisions in the future! ~BRAD
Assisted Living is great, things to do and nice meals, people to socialize with etc. My father liked playing cards with the men a few nights a week. It's a relief to have no laundry to do or sheets to change, meals to cook, etc. A mini bus can take you to the grocery store or the mall. Or, if you have a car, keep it and drive yourself. You'll also have a doctor on the premises you can sign up with and caregivers for your wife to help her with bathing and toileting.
Wishing you the best of luck with all of this.
You are on borrowed time now, the best time to act was yesterday and the next best time is today.
Suggest you look at assisted living places nearby that have a continuum of care, as your wife will need more care as time goes on. You could also look at places near your kids, but don't expect anything of them.
Another idea, since your wife likes to read. If there is one place she likes to sit, change the light bulb from "soft white" to "daylight". I found for myself since I have gotten older (pushing 80) that I need more light. I even changed all the light bulbs in the kitchen and bathroom to daylight. Made a huge difference for me. Hubby found he can see better, too.
Your wife's following you and repeating the same questions over and over again and not remembering things a few minutes later are all to be expected. Look for information about Alzheimer's and caregiving and maybe find a support group (online if you cannot be gone long enough to attend in person meetings.). It may help you a lot to hear others' very similar stories.
Ask the Alzheimer's Association for resources and information and cargiving guidance. Many people have recommended books by Teepa Snow and others. Information and support will help you feel better prepared.
If you are not ready to have her moved out of your home to a memory care facility, here are some options: You might consider selling your tri-level home and moving together to an assisted living community which offers a memory care unit and skilled nursing if either of you need those services in the future. You can get a little help and still be together. You could find an adult day care near you. Some of them will provide transportation to and from, and will keep her occupied for several hours during the day, to give you a little break.
I am concerned about her walking with her risk of falling. If she is using the walls as her support, consider installing a railing along the walls - give her something to hold on to. Stairs are probably not a good idea for someone who is a fall risk.
As her dementia progresses, she may not be able to read any more. She may find it easier with large print, simple, short stories and a lot of pictures. My husband didn't read, but liked watching animated movies over and over.
I applaud your efforts to keep her busy and moving. It will help prevent her legs getting too weak. If she is struggling with that, try offering simpler tasks, or find a way to make it fun or make it a challenge. Can she dust? Can she re-arrange knick knacks? Separate socks and fold laundry? Take the books away for a certain time period each day, tell her it's time to take a break from reading, which will force her to engage in the present (reality) and find something else to do for a while.
Start touring memory care facilities now. It will help you to feel better about the decision.
These wonderful facilities can be expensive, but less expensive than say having caregivers come daily to one's home. I saw first hand how nice such a place would be when my Dad had moved in. He loved being around people of his generation, and loved the restaurant style dining area. Eventually he needed to move to "Memory care" where he was happy with his new "college dorm room" and all his books.
"John and Heather's Dementia Journey." John cared for Heather in their home as long as possible. He had outside help coming in. One year ago, she moved to Memory Care. If you go back to the early videos, you will see Heather shortly after her diagnosis. Then you can follow the journey from a Heather who could get around the house, converse, feed herself, etc, to a Heather that could not put on shoes, navigate her home, feed herself, etc. It is a painful journey, but very real. John did the best he could but eventually he knew that Memory Care was the best place for her. He continues to document a few times a week and is moving more into talking about his own life now rather than focusing the camera on Heather.
I hope you have some trusted Memory Care facilities near you that you can begin to interview to see which one would be a good fit for your wife.
Caregivers have different levels of tolerance, or care support. Some caregivers cannot tolerate their LOs incontinence (especially men), repetitive stories and questions, wandering, lack of hygiene, or unpredictable behavior. Others swear that they will never place their LO in a care facility (or their LO makes them swear that they will never do so). In many cases, that's a promise you will not keep.
So, it's not so much about your LOs behavior as much as YOUR ability to properly and safely care for her without it affecting your own health and mental state. You cannot cure, change, or control the inevitability of the disease. But you can control your own ability to both safely care for her and yourself. We all have our limits of caregiving. You have to establish those for yourself.
You ask, “When should I look for a memory care facility?”
Consider these red flags:
Are you literally tired, exhausted, overwhelmed with the responsibility of caregiving?
Is the job of caring for your wife becoming too stressful?
Do you find your have no personal/free time?
Are you losing sleep?
Do you get angry at the situation, your wife, God?
Do you feel safe? (Does she leave the stove on, fall a lot, can't negotiate the stairs)
Do you feel that your at “end of my rope”.
If so, you may want to start looking for a “new home” for your wife now.
Dr. John Dunlap, a geriatric physician at John Hopkins University Hospital and author of Finding Grace in the Face of Dementia said “I have observed over and over again that the experience of dementia may be much harder for the caregiver than for the person with the illness.”.
After 8 years of caring for my wife, I consider myself an Alzheimer Caregiver Survivor. It's not a job for the faint of heart!
Call the Alzeimer Assn 24 hour help line to see if there is a dementia support group in your area. Attending one can help you realize that you are not alone in this endeavor. You will learn that “this is not something new, only to me.”.
You can also start contacting and looking at local retirement communitiesthat offer a continuum of care. I see that at least one, Atlantic Shores, is specifically for retired military families. They can help you evaluate whether your wife could safely live with you in an assisted living unit (since she's not wandering unsafely or engaging in risky impulsive behavior), or whether it would be best for her to go to memory care while you are in assisted living or even independent living. Wherever she goes, it will have safety features and be accessible, if you find that using a walker, rollator, or wheelchair is the best way to get her around to prevent falls -- and a trained staff right there, should she have an accident.
I have no firsthand experience with the VA but I assume they have people who could help advise on this kind of thing, including any financial assistance that might be available.
I'm sorry you need to do this, but if you've been married 62 years you must be in your 80s, at least, so if they need isn't right now, it will come at some point. Start actively gathering information and doing consultations now, so that you can make an informed and planned decision, instead of having a panic situation if an accident or emergency occurs.
Keep us posted on how things are going. I'm sorry the need has arisen.
If you are your wife's PoA then she really needs to also have someone else in line incase something happens to you. And, I'm hoping you have a PoA who is local to you and younger.
In the end, it doesn't matter if you are near great medical facilities if you don't have someone accompanying you to the appointments, helping to legally manage increasingly complex health issues or even driving you there. These past 3 months I had to take my Mom to the dentist 7 times just to get a tooth ache diagnosed, tooth extracted and then a new flipper tooth retainer created and properly fit. I live next door to her. She no longer drives and now at almost 97 has moderate cognitive impairment. She lives in her mostly single level home semi-independently but would never be able to pull it off if I wasn't next door.
Loneliness is also a huge issue as we age. Relatives is usually all people have left to rely on if they live into their 80s and beyond.
Don't be naive and think you may never develop memory or cognitive decline as well. Or, you may have a sudden unexpected health issue or even an accident. Then what? If that happens you will be far less able to make good decisions for the both of you.
Can you arrange your house so that most of your living can happen on a single floor? Do you have a large house with lots of content? Would anyone want it? My own 3 sons tell me they don't want anything in my house. I've recently had to sell the household items in my Aunt's home and most of it went in a community garage sale for next to nothing. Even charities are way pickier about what they accept now because the Boomers are jettisoning so much stuff.
Also, your wife following you around is called Shadowing. It's a behavior that comes with dementia. I suggest you educate yourself about dementia so that you can deal with her decline in the best way possible. At some point she may need meds if she is too anxious or agitated.
"I seem to be in reasonable health so far" ... until you're not. Don't let your current status quo fool you. The older you are, the higher the odds that you will have a profound health incident that will change everything for the both of you. You've already had a heart attack at a young-ish age.
You decide about a facility or in-home aids for your wife when caring for her makes you start feeling burned out. Care is very expensive, FYI. Some facilities can cost $5K and up per month. The more care she needs, the higher the cost. Even in-home care is expensive and can be a headache to manage.
The seasoned participants on this forum are giving you great advice and I hope you take it to heart. You must take care of yourself well since caregiving can shave years off your life. May you receive wisdom and peace in your heart as you make decisions.
Best of luck, and please let us know how things are going.
The less you have to clean in the house, the better. If you have the funds, get a housecleaner to come in once a week or so, and also look into adult day programs where they will shower her for you and you'll get a break during the day. Usually 6 or 7am until 5 or 6pm, with a bus to pick them up and drop them off.
As far as memory care , you’ll know when you can’t handle living together anymore.
You may want to consult an eldercare attorney as well regarding possibly splitting assets so you each have money for your eventual care needs.
In the mean time , consider hiring help a few hours 2-3 days a week so you can get out by yourself and get a break .