Dementia Of A Loved One Can Be Devastating, We are Here to Help
Coping As a Caregiver
Coping As a Caregiver
There are many types of caregivers and your role as a caregiver may change several times during your loved one’s dementia. I also must share that my mom was living with her companion in a home with an occasional home health aide until it was felt that it was no longer a safe environment for her. We then moved her to my apartment which was supposed to be for a matter of days and ended up being three and a half weeks. Ultimately, we then had her in two different assisted living facilities. Each time my role changed.
This is important to consider because the stresses and strains when you are the primary caregiver may be different whether you are taking care of your loved one in your home, whether you go to their place of residence, or whether they are in a nursing home or assisted living facility. Although there may be more physical challenges when you are the one primarily taking care of them, do not think that having your loved one in an assisted living facility or a nursing home will be any less taxing on you.
Here are some issues and tips to consider:
1. At any given time, if you have done the research and made an informed decision, stop second-guessing your decision as to your loved one’s living situation.
I am still haunted by the fact that I put my mom in an assisted living facility. Logically I know it was the best decision. She was not just “wandering off” from her own home. After two and a half weeks at my apartment, she started trying to “escape.” It would have been impossible to keep her safe in my apartment. An apartment of her own, which I thought I might acquire in my complex, similarly would not be physically safe for her.
When I first took her to the first facility, she seemed very amenable to it being her new “apartment.” Thereafter, one night she accused me of putting her in a “nursing home,” something she considered to be very bad. I tried to explain to her the difference between assisted living versus a nursing home. She left the conversation and then came back and said, “What about the dog?” It broke my heart to tell her the dog would have to stay with me, but I would bring her little chihuahua for visits.
My whole life, I always said I would not put her in a “nursing home.” The simple reality is until your loved one is enduring the middle to later stages of dementia, you honestly cannot anticipate what their needs truly are so it is expected that you might make that type of promise to your loved one or even yourself.
I think the same thing goes for those who are taking care of their loved ones in their homes. There may be times when it is physically and emotionally exhausting, yet if your assessment of their needs remains unchanged, there was a reason you concluded to keep them home and you shouldn’t spend your time wondering whether it was the correct choice.
The guilt over these issues truly can eat you alive and are not healthy. Many a wealthy man when asked by me what was their secret have all told me the same thing: to make informed decisions and don’t look back on them. It also applies to your loved one’s care. Just remember, this is not to say that their needs won’t change over time and call for another evaluation process.
2. Ask for and or/demand the help you need from friends and family.
In most families, at least over time, one person will end up being the primary caregiver. Realize, that even if your loved one is in a facility or in their own home, there tends to be one person who primarily will be the one helping and then responsible for your loved one. It might be the one who lives closest, who was that person’s favorite, who is most willing, who was legally chosen, or anything else.
When dealing with facilities, it is best for there to be one voice dealing with the facilities. The personnel at the facilities often told me stories of bickering siblings giving them contrary instructions about their loved ones.
Yet, realize if you are the primary caregiver, in whatever capacity, you need not go it alone. In some families, help from siblings and friends will be abundant, in others it may not.
3. Stop ruminating about the lack of help from others.
I think in many families, one person does the brunt of the care, and it is just natural for that person to get upset about the lack of others chipping in. You cannot let it eat you alive.
I do have a theory that in each family there tends to be one child that is the “caretaker.” They make sure family gatherings are held and attended, they are the ones who share the family photos and that type of thing. They keep the information flowing and when a family member is in need, they take the helm.
I also think that there are two types of people – caretakers and caregivers. Yet, I do believe that caregivers’ self-identities often include the fact that they are good people because they take care of others. So, in a way, they benefit from helping others. I say this because I recognize it in myself and in many others.
I can tell you now that you will never know until it happens how much “help” you will get. When I first moved my mom out to New Jersey, I had visions of this full life for her, constantly being seen and taken out by her loved ones. I figured there would be: trips to New York, shopping, and a whirlwind of her daughters and grandchildren visiting. It was not to be.
Of course, my mom’s experience was affected by Covid-19. My mom came to New Jersey on March 6, 2019. She had just about a year in the facilities prior to Covid-19 lockdowns setting in.
It is hard seeing your loved one deteriorate; I can only think that fact had a lot to do with why many of our family members did not visit my mom as much as I thought they should. Maybe they felt that since I moved her near me, this was a reason why they didn’t need to visit that often.
We also had the problem that she really was not able to talk on the phone which made it more difficult, and it wasn’t until Covid-19 set in that facility staff could be counted on to arrange for “FaceTime” visits. Most of the visits were by me and my two daughters. Later, when there were Covid-19 shutdowns, we did most of the FaceTimes too.
I would nag my sisters to go visit. During the first Thanksgiving we had without my mom being there, due to Covid-19, we had a family zoom call with most of the extended family and I remember I broke out in a frustrated tirade. I complained about people not doing video calls and told them that her condition was truly worsening and that they needed to FaceTime with her (She died 2 months later).
What gets lost here is the people who were really helping me out – my two daughters and even my one daughter’s boyfriend. My daughters would go with me to visit my mom. They were company on the ride and would visit with her when I spoke to personnel. My daughter’s boyfriend helped us move her from one facility to the next and eventually helped pack up her things when she died. I will be forever grateful to the three of them.
I felt a lot of guilt over not visiting my mom enough (pre-Covid) and felt like I wouldn’t have to visit as often if the others would just see her. This is really what I wanted the most from others.
4. Do not feel guilty about not visiting your loved one “enough.”
There is no right amount of time or number of monthly visits that is the “right” number. Yet, I like many, felt constant guilt that I wasn’t visiting my mom “enough.” I wanted others to visit her, to lower my guilt. I do think that the quality of the visits is more important, but I do think frequency is important too.
That said, you can only do what you can do. We all have lives and others we must take care of, things we must tend to. I used to always say “A happy mama makes happy children” and the same goes for caregivers. You cannot be effective when you are stressed, tired out, or otherwise worn out.
Make your visits count, though. Often staff members would take the opportunity to use visiting time as the time to tell me what she needed, give me updates, and the like, but you can’t let these things prevent you from spending enough one-on-one time with your loved one.
Also, learn to time your visits. Certain group activities will be worthwhile to attend with your loved one, others will not. While early on we found visiting during mealtimes to be great for interaction, as time went by, we found mealtimes existed of my mom solely focused on gobbling down her food and not anything else. We also learned not to go during the times she was tired.
If advisable, bring treats. My mom couldn’t be trusted to be left with big bags of potato chips or chocolates, and the facility wasn’t accommodating in doling things out, so we instead would bring smaller items each time we came. There was no reason she couldn’t have an occasional treat and the offerings at the facilities got old after a while.
Bring things to entertain your loved one during your visits. I bought a portable CD player and would play opera tapes. I would bring books and read to her. I pulled out wonderful children’s books I had from when my children were young on famous artists and musicians. The iPhone with its picture storage became a great way to fill her in on what everyone was doing.
5. Keep careful lists of everyone’s names, roles, and phone numbers.
Being organized will go a long way to taking care of your loved one. Keep separate folders for everything! Be organized regarding phone numbers and names. I was sloppy regarding phone numbers and was always wasting time and getting stressed looking for numbers. My mom had a good number of visits to the hospital. When this would happen, it would be an entire new list of numbers and names. Again, organization is key.
When dealing with assisted living facilities you will see there is a high rate of turnover in all areas, even department heads. It seemed as if, just as soon as we found someone I could really talk to and who seemed to take a special interest in my mom’s care, they would be gone. Keeping track of those who are taking care of your loved one becomes important.
Read the newsletters that come from the facility and note the names and numbers you need.
6. When taking care of a loved one in your home, do whatever is necessary to make your job easier.
Taking care of someone with mid to advanced dementia is a full-time job. Period. Do whatever you need to do to make that job easier. Do not feel guilty about it. Even if funds are tight, things you might consider splurges may be worthwhile. For example:
a. Cleaning help. Even if all cleaning was done by you previously, living with someone with dementia adds a whole additional layer of cleaning work. Not only are they another person, but their care takes extra work. It is so important to keep things locked away, to immediately clean up messes, and to protect against dangers that you end up having your home extra clean and neat. Since this is for safety, it is not an extraneous expense.
b. Consider buying time-saving products. Even if you consider them a little pricey, you may find these products worth your time and sanity! Cut-up bags of salad and vegetables are a major time saver. Say goodbye to homemade soups and buy them canned. Microwavable rice is great. Simply remind yourself of what is important. Is your loved one better off sitting with you chatting and having a cup of coffee or sitting in front of the television while you make a homemade soup?
c. Simplify your loved one’s wardrobe to make it easier for them to get dressed or for you to dress them. Stick to slip-on shoes, slip-on pants and avoid anything where they need to tie a knot or belts, buttons, and zippers. Velcro is great. Think of simplifying the colors they wear to reduce laundry or try my tip: one week, have your loved one dress in lighter colored clothes and underwear and for the following week, go darker. You may think eyeglass chains are not the most fashionable thing, but they are just so practical and prevent constantly having to search for glasses.
d. Simplify medication time. Use daily pill containers and once a week sort all their medications.
e. Pare down your loved one’s beauty routine. Think of just taking out a couple of lipsticks and storing the others, then cycling them. Shampoo and conditioner in one might work for your loved one’s hair and save the double process.
f. Properly protect their bed. For their bed, plastic mattress covers are a must, and incontinence mattress pads may also really reduce laundry.
g. Keep your loved one active during the day, so you can sleep at night. Both the facilities my mom stayed at had strict policies of keeping the residents awake during the day – to avoid them being up all night. The more active you keep your loved one and avoid them day napping, the more likely you will be able to get a decent night’s sleep.
h. Clean up your own clutter! You don’t need the added stress of your loved one either getting into your stuff or endangering themselves by your stuff! Let practicality lead the way; tuck away, for now, things that you do not need.
7. Take time for yourself. Dream on, you may say! Remember, even stolen moments count. When your loved one is napping, stop the cleaning for a moment and sit and have a cup of coffee. You will be less resentful and happier if you take even short moments for yourself. Get the help you need to have a few hours off. Arrange for the ability to have a whole day or weekend off. Doing so does not mean that you are weak, lazy or incapable; it means you are human! There’s a thing called “respite care” which means a couple of hours of a home health aide, the use of adult day care centers and programs, and/or short-term stays at an assisted living facility or nursing homes.
8. If groups are your thing, join a group. Groups are not for everyone, but for those who enjoy them, it may be helpful to join a group. Here, you’ll hear people who are going through similar experiences, can get tips and can get help with local resources. Some places even have sessions where the caregiver and their loved one both come, the ones afflicted with dementia going separately with an accredited caregiver while their loved ones meet with each other. How do you know if such a group is for you? You may just have to try it. Today there are even online groups.
9. Seek professional help if you need it. The stresses and strains of taking care of a loved one and of seeing them decline is very stressful. If you find yourself starting to have trouble coping, consider seeing a professional.
Some Articles:
Caregiver stress: Tips for taking care of yourself
https://www.caregiver.org/resource/emotional-side-caregiving/
Emotional Side of Caregiving
Article with Tools and Tests:
Coping with Caregiver Stress and Burden from the American Psychological Association
Other Resources:
National Suicide Prevention Lifeline
