Many of us will be faced with caregiving when our children are long grown and we are watching our grandchildren grow up. Some of us are faced with caregiving in our 40’s while our children are just beginning adulthood … or even earlier! We were one of those in the sandwich generation, helping take care of our parents and children at the same time. A bit later, I was faced with caring for my husband too.
Being a caregiver is never an easy job, but there are more stressors that exist for the younger caregiver than the one in their 70’s or 80’s. Younger caregivers have to try to balance raising their children, being there for their parents, trying to work and being productive in that arena, and saving for their own retirement. That’s a very tall order. They are being pulled in all directions! Their saving grace is that they are younger and healthier, where the older caregiver may not have the stamina or be in declining health.
In a family where the primary caregiver has siblings, it can be easier or harder depending on whether the siblings can work together or not. If they are all in the same town, so much the better. When they are separated by distance, it makes it harder for everyone. This is generally the case in today’s world.
Always one member of the family or couple (daughter & son-in-law for example) has to be the primary caregiver and the other siblings are the ancillary members of the team. If they all equally try to help without someone orchestrating a specific plan, it can become chaotic, repetitive, and disorganized as well as frustrating. The primary caregiver will also be the person who carries the most stress because they are carrying the largest load.
One of the first things that needs to happen when a family member is diagnosed with dementia is a family meeting while all siblings, their spouses, parents (including the person with dementia), and perhaps even the parents’ siblings if they are nearby come together to discuss the diagnosis, brainstorm, and create together a family plan of action for their loved-one. Don’t include the siblings of the parents if they cannot be participating in the plan, as that just causes strife if they have opinions but aren’t helping implement them!
It is a great idea to have the person with dementia and their spouse present if this is an early diagnosis, because it allows them to voice their wants regarding various parts of the developing plan. It also shows them that disclosing their diagnosis is good and healthy, and should give them some peace to know that the family will support them throughout their journey. If they show great resistance and/or denial, then perhaps the planning should be done without them. These family meetings should continue throughout the disease process so everyone can be brought up to date with the behavioral changes, new approaches, and added support that will be needed as the disease worsens. The periodic meetings can be ones where they are all face-to-face, or they can be phone conferences or Skype sessions. If there aren’t periodic family meetings of siblings as the caregiving progresses, then one person or couple end up doing all the work and the other siblings are left not knowing what needs to be done, which causes hard feelings on both sides.
When deciding who will be the primary caregiver, it may be the person who lives the closest, the one with fewer or no children, the one who has the most “forgiving” job (necessary interruptions, phone calls), the one with the most money, or the person without a job. All things are on the table for discussion: Is there someone who can give up working and be paid by the family to caregive, or do they all need to look for placement and then oversee the care than ensues. You are never “done” when someone is placed in a facility because there is oversight and direction of care decisions that must be made to make sure that your loved-one is properly cared for. The position of primary caregiver has to be by choice. You can’t vote for someone who doesn’t agree to hold that position.
Many times the person that lives the closest geographically is the primary caregiver. But the other siblings need to agree on things they can do from afar (paying bills, etc.), and also on dedicating blocks of vacation time when they can come and be substitute caregivers, allowing the primary caregiver time off away from the caregiving routine. If you don’t orchestrate these breaks for the primary caregiver, their time caregiving will be limited due to burnout! Stress can not only cause mental burnout, but it can also depress your immune system causing physical illness of the caregiver.
If the primary caregiver keeps all family members in-the-loop with periodic updates as to how the caregiving is going, what tricks work to quell certain behaviors, approaches for daily care that work with the loved-one with dementia, and new things they need as the disease progresses then the rest of the family is on track. These can be communicated by periodic e-mails, conference calls, or a little newsletter sent to all involved in the care. That way the primary caregiver doesn’t have to repeat the same thing multiple times! Many of my families use the e-mail newsletter format to accomplish this task. That way when other folks become active substitute caregivers, they aren’t stepping in cold to the situation. If you don’t keep family members updated they begin to feel left out and rifts can develop between family members. Also, if you have family members who don’t want to be involved, it can cause hard feelings with those who do help out. Sometimes the members are merely scared and think they can’t handle it. The more frequently they are kept involved, the easier their involvement becomes because they learn along the way.
Most people, if responding truthfully, don’t want to choose to be a caregiver. It is the hardest job imaginable, but it needs to be done. Someone has to step up. It can actually go quite smoothly if everyone is helping in the best way that they can, and the primary caregiver gets well deserved breaks as often as possible. They also need appreciative comments from their ancillary team.
When a family member comes to help out:
- If you are the person stepping into the role, realize that the primary caregiver has established a particular routine they use with the person affected by dementia. It is always good to know what the routine is beforehand. Some deviation is OK as long as the deviation doesn’t raise the person’s anxiety. Folks with dementia like a routine. It makes them feel safe. Your following the already established routine may not only give the primary caregiver who is away some piece of mind, but your day may run smoother.
- When the caregiver establishes a routine, it not only helps the person with dementia, but it gives the caregiver a feeling of control over the disease and gives them some peace of mind when there is so little they can actually control. The caregiver may have found some good ways to accomplish the daily living tasks with the least amount of resistance from the person with dementia. These ideas need to be communicated. Respect their wishes. They are the one in the trenches!
- As the primary caregiver, when substitutes come to give you relief, give them the benefit of the doubt! They may not do things exactly as you do them, and that is OK. As long as the change doesn’t heighten anxiety or worsen behavior, all is good.
- As the substitute caregiver, keep in mind that your visit in many ways is like the divorced couple where the wife deals with all sorts of challenging scenarios during the week and the dad “waltzes in” on the weekend with presents and fun things to do for the kids. Respect the primary caregiver’s wishes. Always ask what “chores” you can accomplish while you are there to help take some of the burden off the primary. Watch your words. If you have a suggestion, how you word it makes a big difference. Instead of “You should”, say “Someone in my support group said such and such, maybe that might work for Mom.”
- Likewise, when the primary caregiver is talking to a sibling, don’t begin with “You don’t”. Begin with “I really need”, or “Mom needs”. Be concrete and non judgemental.
- As the primary caregiver, it angers you when some siblings don’t want to be involved at all. It hurts deeply. It’s not really the anger that has you down. Anger is always a secondary emotion. You get angry when you are hurting. Try not to lash out at those siblings who are not helping. Try to suggest ideas of things you think they might be able to do, to be a participating family member. Even though we all initially do it, don’t keep score! Mulling over the inequalities in your mind just winds you up more and makes you angrier, thus impacting your stress level and your emotional state. If you have tried numerous ways to get them to help, and they won’t, let it go. It will take some practice, but just stop your thoughts when you start winding yourself up and shut yourself down! You will be happier, and your mate will thank you too!
- If you plan early on for some respite relief, and ask for it from the beginning, your siblings will more likely follow through, and they will know you need it when you ask for it. Giving of your time as a sibling is the best gift you can give, and money is second (which can be used for hired respite care). Don’t wait until you are overwhelmed and hurting. Do keep in mind that some siblings may have more flexible jobs than others. Teachers may have off in the summertime, but they can’t receive phone calls or be interrupted with emergencies when they are teaching class. A cross-country trucker can’t change his work schedule at the drop of a hat to help you out, especially in an emergency. Plan ahead so your siblings can participate. Long range planning is the best because everyone can do that. The emergencies just have to be dealt with at the time and with whomever is handy.
Let me know of other ideas you come up with that have worked for you. These are just ideas that have come to mind at the writing of this article. Best wishes on your journey!