After my dad was hospitalized and I realized my 88yo parents could no longer live independently, they both came to live with me 13 months ago. Mom has some age-related decline but is mostly self-sufficient. Dad has dementia and needs a great deal of care. I am their only child. Mom and Dad have been married 69 years. Even with his dementia, Dad still knows Mom and doesn't ever want to be apart from her. I am married and work full-time, and we're managing right now with hired caregivers during my work day. It's getting more and more difficult, not to mention more and more stressful, to care for Dad, and I anticipate some point in the future when we will have to put him in a memory care unit. Mom does not want to go to a facility with him, nor does she need that level of care. It breaks my heart to think of him in a place without my mom, knowing how emotionally dependent he is on her and knowing how confused and sad he will be without her. How do I handle the emotions that will come from separating him from his beloved wife?
The key is to find a FLEXIBLE senior community that's really lifestyle and resident focused. They all say they are, but some are run more like nursing homes with more rigid (and sometimes arbitrary) rules.
Kimberly G., BSN RN SRES
Geriatric Nurse Consultant/Senior Real Estate Expert
She may be longing for a break, you know. Be prepared to keep your face neutral.
Mom has some heart issues but is more than capable of taking care of herself. Dad has Alzheimers and Mom has been caring for him. They live in an independent senior living facility. Caring for Dad has taken a toll on Mom mentally and physically and she simply can no longer care for him. They adamantly refuse to live with either myself or my sister. So for both their sakes, we are moving Dad to memory care and Mom will move into a studio apartment in the independent living facility for now (we expect that at some point, she may need home health care or a move to assisted living).
The memory care unit is just across the parking lot from independent living. Due to COVID, they won't be able to physically visit at this time but can do Facetime (with the help of employees at the facility) and if the weather is nice Mom can go over and visit at his window.
This was not an easy decision and we know it is going to be a big adjustment for all of us but we had to do what was best for both Dad and Mom. Dad has been "existing" for the last year. There is no joy in him (and he was always upbeat and joyful). We hope that the professionals at the memory care unit will be able to get him to be more engaged than he has been and we might see some of the real Dad again. It is especially hard because he is physically healthy.
I wish you luck in your decision. No matter what you decide, you will have moments where you second guess your decision. Keep what is best for each of them care wise in your mind and it will help minimize the guilt that naturally comes along with these decisions.
It took over a year to convince my mom that they needed to leave their home of 62 years. (I realize that your parents live with you, not independently, but the issues are similar).
Knowing that Senior Housing would only be a short-term fix, since my dad was getting progressively worse, we started looking for assisted living with memory care.
We found a few options that allowed them to live together, but also offered services for dementia.
Now they live in a beautiful apartment building. Still living independently, but assisted living services are available ongoing, without moving. Eventually my dad will need to be moved to memory care, but it's in the same building, just in a different wing. By then they will have adapted to their new normal, and hopefully my mother will have made some new friends to help occupy her time.
Maybe it's time to let Mom know that living with you is not the best answer for any of you. You also need to live your life, and know that they are safe and cared for.
As the years progress, what you eat has a cumulative health impact for better or for worse. Those with dementia do not have the ability to know what is best to eat, especially as the dementia progresses. Therefore, the family and carers need to be alert to what works best. My experience is:
1. LIquid intake is very important, preferable 1,000 ml a day in small doses. Coconut water (not coconut milk) works well with a lot of nutrients, as well as mixed with Kefir (kefar). However, this needs to be in doses of not more than 250 ml throughout the day, with pauses after each 100 or so ml for a possible burp. Coating the lips with vaseline helps to reduce air being sucked up.
2. People with dementia tend to like sweet foods, so putting some honey on some foods works well. For example, for breakfast porridge (Ready Brek) with a banana is a good start, with a teaspoon of honey.
3. Don't encourage overeating. Often the person with dementia will know when to stop.
4. What comes in comes out. Incontinence is an inconvenience but manageable. Failure to urinate or constipation is a much more serious problem, often requiring nursing or medical advice.
5. Keeping track of how much a person with dementia is sleeping and eating, as well as their activities throughout the day is often helpful in deciding how best to provide care.
6. If vomiting occurs, you may need to give a medicine (Zoton/ Lansoprazole) that coats the inside of the tummy and should be taken half an hour before eating, although you can drink immediately after taking it. Ideally, the tablet is placed on the tongue, but it can also be dissolved in a small amount of water and sucked up in a straw. Also, sometimes a powder that is placed in liquid such as Nutilis thickens the liquid and helps drinking.
7. Note these comments are not from a medical doctor, just from personal experience with one person. Check with a medically qualified person before acting on this advice.
Love and Prayer as you make many little and big decisions.
1. If you have a good hospital bed (in the United Kingdom there is the Dyna-Form Air-Pro Plus bed that is an air mattress that adjusts sections of the bed every 20 minutes by electricity), this makes it possible for someone to remain in their home and still have a surprisingly contented life. I pull up a separate bed frame and mattress and sleep beside her each night, which we both appreciate.
2. You do need carers (or the Americans say, caregivers) to come especially in the morning and evening to change incontinence pads and help with meals. We have Home Instead, a US firm, that has local franchises especially in the USA. Each franchise will be different but our experience is that they are very competent and caring. If you try to keep care for yourself or within the family, you will burn out.
3. Both persons going into a care facility at the same time is a possibility, but you have to make the choice cautiously. It could be difficult for someone without dementia to spend the entire day surrounded by dementia. However, it might be a possibility with a shared room and different activities. I considered this, but rejected it. A lot of the problem in the United Kingdom is that care facilities are quite regimented with people being required to eat, sleep and do specific activities at set time. Each of us are unique human beings with different needs. For example, my wife is sleeping some 16 to 18 hours out of 24 (with 12 to 13 each evening and morning and afternoon naps). This is essential for her to be able to relate to others; and there is research evidence that sleep helps a person to cope with the Tau tangles and amyloid plaques in the brain--not to remove the underlying problems, but to temporarily diminish their impact. In a care facility this is hard to handle, unless the person just stays in bed and is somewhat ignored.
Be encouraged and move ahead slowly. There will be a solution that is right for everyone.
Love and Prayers
I know you feel at the end of your rope, but these times are short-lived and you can never get them back.
Separating them may hurt you more than them.
At some point he will begin to forget your mom, and that is likely when you can bring her home again. If she would agree, going out during the day will require some fibbing on her part, to assure him she'll be back. She could say she's going to work or out to shop, etc. Another option is to have her spend part of her day there, taking meals with him, maybe lunch or dinner and then come home when it's his bedtime. That way she gets to be with him without having to provide care but doesn't have to live there or incur the cost of living there. It would make his adjustment a little easier. It's only temporary, until he adjusts.
See if you can move them in together. But don’t assume that your mother will outlive him, just because she seems self-sufficient now. Just keep them together as long as you can. Lots of love to all the family, Margaret